I always wondered about those people who sent long messages of gibberish.
I found out how they did it.
For those of you who have been on the Parkinson's Digest for awhile may
remember when I had a bi-lateral pallidotomy (actually the first one
performed to my knowledge) on Dec. 1, 1993. It was performed by the
brilliant, skilled, innovative, "wild and crazy," controversial Dr. Robert
Iacono. The only neurosurgeon who can claim over 2000 surgeries for the
treatment of PD.
Because there was so much controversy about this surgery I made a
commitment to the larger Parkinson's community that I would keep you
updated with yearly reports as to my progress. There were many who said
that the results would only last a year or two at the most. As if that
would not have been worth doing for any time of relief from this insidious
disease. Well as you shall see I am 7.5 years out from surgery and still
going strong.
I am recently serving as a Parkinson's Disease "research assistant" with
Dr. Bonham in Pittsburgh, who Jim Cordy has called on of the most brilliant
PD docs he knows.
If any of you want more info on the pallidotomy go to "www.pallidotomy.com"
or contact me directly.
7 1/2 YEAR POST-Pallidotomy REPORT
(Surgery date 12/1/93)
By Dr. Don Berns
United Parkinson's Disease Rating Scale (UPDRS)
On
Off
Prior to Surgery 12/1/93 -46 -51
Six Years Post-surgery 12/1/99 -4 -12
Seven and one half Years
Post-surgery -2 -12
How can I say thanks for the radical transformation that took
place in my life 7 1/2 yers ago. When I reflect on all that I have
been able to do as the result of this operation I am overwhelmed and oh, so
grateful.
For those of you who are not familiar with my story. Let me say that I had
a adrenal graft implant at Vanderbilt in 1987 with minimal benefits. On
December 1, 1993 I had a simultaneous bi-lateral pallidotomy. This life
changing operation was performed by Dr. Bob Iacono after others had told me
I would not be a good candidate since my brain was already compromised by
the surgery at Vanderbilt.
As has been my commitment to the larger Parkinson's community I have posted
updates on my condition every year since surgery. My last update was a 6
year post pallidotomy report. As I head into my eighth year post-surgery I
continue to benefit greatly from the pallidotomy
COLUMN CODES
-1 - SYMPTOM BEFORE SURGERY
0 - 6 mos. AFTER SURGERY
1 - 1 YR. POST-OPT
2 - 2 YR. POST-OPT
3 - 3 YR. POST-OPT
4 - 4 YR. POST-OPT
5 - 5 YR. POST-OPT
6 - 6 YR. POST-OPT
71/2-7.5 YR. POST-OPT
SYMPTOMS BEFORE SURGERY & YEARS POST SURGERY
SYMPTOMS -1 0 1 2
3
remor Severe Gone Gone Gone Gone
Dyskinesia Severe Gone Gone Gone Gone
Sweating A
Lot Gone Gone Gone Gone
Sleep
Disturbed Severe Gone Gone Gone Gone
Eyelids
Open-Sleep Yes Closed Closed Closed Closed
Shuffle Yes Gone Gone Gone Gone
GaitFreeze Yes Gone Gone Gone
Gone
enseSmell Gone Better Better Better Better
MuscleAche Yes Gone Gone Gone
Gone
ackProblm Yes Gone Gone Gone
Gone
kinesia Yes Gone Gone Gone
Gone
radykinsa Yes Gone Gone Gone
Gone
exPerfmce Poor Great Great Great
Great
tress Affect NoEfct NoEfct NoEfct NoEfct
Drooling Rare Slight Slight Slight Slight
Urgency
Urinate Yes No No Slight Slight
Dystonia None None None None
None
hortness
Of
Breath Yes None None None
None
oice Weak Better Better Varies Varies
Speech Affect Better Better Better Better
Handwritng Bad Normal Normal Normal Normal
On-Off Yes Gone Gone Gone Gone
Appetite Poor Normal Normal Normal Normal
Weight Loss Gain Normal Normal Normal
Sense of
Well Being Poor Exclnt Exclnt Exclnt Exclnt
SYMPTOMS YEARS POST SURGERY
SYMPTOMS 4 5 6 7 1/2
Tremor Gone Gone Gone Gone
Dyskinesia Gone Gone Gone Gone
Sweating Gone Gone Little Gone
Sleep Disturbed Gone Gone Slight Slight
Eyelids
Open-Sleep Closed Closed Closed Closed
Shuffle Gone Rarely Rarely Rarely
GaitFreeze Gone Gone Rarely Rarely
SenseSmell Better Better Better Better
MuscleAche Gone Gone Gone Gone
BackProblms Gone Gone Gone Gone
Akinesia Gone Gone Gone Gone
Bradykinesia Gone Gone Gone Gone
SexPerfmce Great Great Great
Stress NoEfct NoEfct NoEfct NoEfct
Drooling Slight Slight Slight Slight
Urgency
Urinate Slight Slight Slight Slight
Dystonia None None None None
Shortness
Of Breath None None None None
Voice Varies Varies Varies Varies
Speech Varies Varies Varies Varies
Handwritng Affect Affect Affect Affect
On-Off Gone Slight Slight Slight
Appetite Normal Normal Normal Normal
Weight Normal Normal Normal Normal
Sense of
Well Being Exclnt Exclnt Exclnt Exclnt
MEDICINE SCHEDULE
MEDICINE BEFORE SURGERY & YEARS POST SURGERY
-1 0 1 2 3
Sinmt C.R.
50/200 3.5 3.5 3.5 4
4
nmt25/100 1
Snmt10/100 .5 .5
.5 2
----------------------------------------------------------------------
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=========================================================================
Date: Mon, 23 Jul 2001 20:40:25 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Preimplantation Genetic Diagnosis
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Friends-- Has ANYONE answered Ray's posts about PGD and the fact that it
does not destroy embryos? If so I missed it---and the word, assuming he's
right, is NOT getting out. On "60Minutes" Sunday night there was a feature
about the stem cell controversy, which again (as always) spoke of the
"destruction of the embryo".
Does anyone know if this is a valid point we SHOULD BE MAKING in our
letters to legislators and GWBush????????
Ray Strand wrote in part:
> I have been keeping quiet but, could no longer
> contain myself. The Conservatives that use
> the rhetoric saying the "destruction" of an embryo
> is necessary to obtain stem cells is false.
> PGD may be more difficult, but, the blastomere
> is not destroyed and that is documented.
>
> A Conservative Web site with information about PGD
> says that the technique affects embryos negatively six percent
> of the time. I think it would the similar to the
> micromanipulation used with in vitro fertilization.
> So, others know of this technique.
>
> It puzzles me greatly that PGD has not come to the
> attention of the advisers to the President.
>
> I have written Senator Wellstone (Dem.) of Minnesota.
> He lost his father to Parkinsons.
> He supports stem cell research.
Camilla Flintermann Oxford,OH
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
and also at
http://members.tripod.lycos.nl/genugten/flinterm.htm
visit the caregivers' website at http://www.pdcaregiver.org
#######################################
Tomorrow is a gift that is wrapped in Hope.
#######################################
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=========================================================================
Date: Mon, 23 Jul 2001 18:32:26 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: CNN: Transcript: Pope John Paul II
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Transcript: Pope John Paul II
July 23, 2001 Posted: 8:45 AM EDT (1245 GMT)
Pope John Paul II: 'A crisis of values'
The text of the statement by Pope John Paul II
to U.S. President George W. Bush:
It gives me great pleasure to welcome you on your first visit
since you assumed the office of President of the United States.
I warmly greet the distinguished first lady and the members
of your entourage.
I express heartfelt good wishes that your presidency
will strengthen your country in its commitment
to the principles which inspired American democracy
from the beginning, and sustained the nation
in its remarkable growth.
These principles remain as valid as ever, as you face
the challenges of the new century opening up before us.
Your nation's founders, conscious of the immense natural
and human resources with which your land had been blessed
by the Creator, were guided by a profound sense
of responsibility towards the common good, to be pursued
in respect for the God-given dignity and inalienable
rights of all.
America continues to measure herself by the nobility
of her founding vision in building a society of liberty,
equality and justice under the law.
In the century which has just ended, these same ideals
inspired the American people to resist two totalitarian
systems based on an atheistic vision of man and society.
At the beginning of this new century, which also marks
the beginning of the third millennium of Christianity,
the world continues to look to America with hope.
Yet it does so with an acute awareness of the crisis
of values being experienced in Western society,
ever more insecure in the face of the ethical decisions
indispensable for humanity's future course.
In recent days, the world's attention has been focused
on the process of globalisation which has so greatly
accelerated in the past decade, and which you
and other leaders of the industrialised nations
have discussed in Genoa.
While appreciating the opportunities for economic
growth and material prosperity which this process
offers, the Church cannot but express profound
concern that our world continues to be divided,
no longer by the former political and military blocs,
but by a tragic fault line between those who can benefit
from these opportunities and those who seem cut off
from them.
The revolution of freedom of which I spoke at the
United Nations in 1995 must now be completed
by a revolution of opportunity, in which all the
world's peoples actively contribute to economic
prosperity and share in its fruits.
This requires leadership by those nations whose
religious and cultural traditions should make them
most attentive to the moral dimension of the issues
involved.
Respect for human dignity and belief in the equal
dignity of all the members of the human family
demand policies aimed at enabling all peoples
to have access to the means required to improve
their lives, including the technological means
and skills needed for development.
Respect for nature by everyone, a policy of openness
to immigrants, the cancellation or significant reduction
of the debt of poorer nations, the promotion of peace
through dialogue and negotiation, the primacy
of the rule of law: these are the priorities which the leaders
of the developed nations cannot disregard.
A global world is essentially a world of solidarity!
From this point of view, America, because of her many
resources, cultural traditions and religious values,
has a special responsibility.
Respect for human dignity finds one of its highest
expressions in religious freedom. This right is the first
listed in your nation's Bill of Rights, and it is significant
that the promotion of religious freedom continues
to be an important goal of American policy in the
international community.
I gladly express the appreciation of the whole
Catholic Church for America's commitment
in this regard.
Another area in which political and moral choices
have the gravest consequences for the future
of civilization concerns the most fundamental
of human rights, the right to life itself.
Experience is already showing how a tragic coarsening
of consciences accompanies the assault on innocent
human life in the womb, leading to accommodation
and acquiescence in the face of other related evils
such as euthanasia, infanticide and, most recently,
proposals for the creation for research purposes
of human embryos, destined to destruction
in the process.
A free and virtuous society, which America aspires to be,
must reject practices that devalue and violate human life
at any stage from conception until natural death.
In defending the right to life, in law and through a vibrant
culture of life, America can show the world the path
to a truly humane future, in which man remains the master,
not the product, of his technology.
Mr. President, as you carry out the tasks of the high office
which the American people have entrusted to you,
I assure you of a remembrance in my prayers.
I am confident that under your leadership your nation
will continue to draw on its heritage and resources
to help build a world in which each member of the human
family can flourish and live in a manner worthy of his
or her innate dignity.
With these sentiments I cordially invoke upon you
and the beloved American people Gods blessings
of wisdom, strength and peace.
SOURCE: CNN
http://www.cnn.com/2001/WORLD/europe/07/23/bush.pope/index.html
* * *
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=========================================================================
Date: Mon, 23 Jul 2001 18:49:32 -0700
Reply-To: Ted Menser <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Ted Menser <[log in to unmask]>
Subject: Virus
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Just for the record, we have not sent personal e-mails to anyone on this =
list lately nor have we sent out any viruses although we were just =
accused of that. You may come check our "sent items" folder as we have =
a copy of the last 460 sent messages in there. We have Norton =
anti-virus that upgrades every Friday night and it has detected nothing. =
Sorry, please don't blame us!!!
----------------------------------------------------------------------
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=========================================================================
Date: Mon, 23 Jul 2001 21:41:47 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Donald Diswinka <[log in to unmask]>
Subject: VIRUS ALERT:SirCam
Mime-version: 1.0
Content-type: text/plain; charset="ISO-8859-1"
Content-transfer-encoding: quoted-printable
Fellow Parkies and CG's
Please ensure your virus software is up to date as this Worm is flooding al=
l
Mail Servers, as an ISP we have been very busy all day trying to block this
one out.
PLEASE NOTE THAT IDENTIFICATION AT THIS TIME IS EASY AS----"So far, the wor=
m
still can be recognized because the text of the message contains one of
three messages in either Spanish or English. They are "Hi! How are You?" "I
send you this file in order to have your advice" and "See you later.
Thanks." "
I apologize for the lenght and that this message is not about parkinsons
disease. I would rather like to be debating and supporting the Stem Cell
issues than erradicating this worm, but I want everyone to be aware that
this Worm is currently creating a serious Internet problem.
Don PD+ 52/3
THE FOLLOWING REPORT INDICATES WHAT IS HAPPENING.
"SirCam clogs mailboxes, spreads secrets
By Ian Fried
Staff Writer, CNET News.com
July 23, 2001, 3:30 p.m. PT
update The SirCam worm continued to gain momentum Monday, carrying with it
the potential not only to slow corporate e-mail servers but also to send
along company secrets.
The worm, which cropped up last week, continued to infect systems across th=
e
world over the weekend.
"It's not quite a 'Love Bug,' but it's spreading very virulently," said
Vincent Weafer, director of software maker Symantec's Antivirus Research
Center in Santa Monica, Calif. Symantec rates the worm a four on its scale
of one to five, with five being the most dangerous.
Zachary Gaulkin, editor of news site MaineToday.com, said he arrived at wor=
k
Monday to find thousands of infected e-mails, some with attachments as larg=
e
as a couple of megabytes each.
"I had 3,200 in my in-box this a.m., and they are still coming in," Gaulkin
said in an e-mail interview.
Like many other worms, SirCam spreads by e-mailing copies of itself to
everyone in the infected computer's Microsoft Outlook address book. An adde=
d
twist with SirCam is that the worm sends a random file from the infected
computer's hard drive, potentially sending confidential business data or
embarrassing personal information along with the virus. The subject line
matches the name of the file being sent.
"That's a far more serious consequence for a person or business," Weafer
said. "Once a document is gone from your organization, it's gone."
Pennsylvania e-mail user Carl Schaad said he had received numerous infected
messages by Monday morning, including many with sensitive attachments. "I'v=
e
already received memos, resumes, job listings and, in one case, a Visa
number in a letter written to Amazon.com," he said.
Worm-infected messages received by CNET News.com have included titles such
as "Dear Diary," "expense distribution," "Wayne Gretzky" and "Pork with
Leeks and Egg."=20
One factor limiting the likelihood that such files will actually be read is
the fact that most network administrators set their e-mail gateways to
delete infected files. However, the settings can be changed to allow worms
to be removed and the infected files opened.
Weafer said the company received about 400 new reports of the worm Monday
morning from customers and those who use its Web site. That's about the sam=
e
number that came in on Thursday and Friday.
Network Associates' NAI Labs on Monday upgraded the worm to a level of 'hig=
h
risk' from its previous 'medium risk' designation, noting the virus can be
spread not only to addresses listed in the Windows address book files but
also those stored in a Web browser's cache files.
Chris Ashurst, a resource management consultant in British Columbia, Canada=
,
considers himself lucky that he didn't infect his friends and colleagues
after receiving the file on Friday.
Ashurst said he considered opening the file but decided it was a bit
cryptic. When the next message from the same address was another copy of th=
e
same large attachment, he decided to put them both in the trash can and
empty it.=20
"I'm also the local, self-taught amateur system admin guy for the office,
and luckily I managed to alert the rest of the office before they got
infected, too," Ashurst said in an e-mail interview.
Kim Kruse of Huntsville, Ala., said a deluge of SirCam messages made it har=
d
for her to do anything online Monday. "I am on a dial-up (Internet account)=
,
and each file is about 185-200 kilobytes, so it is really clogging up my
speed when it downloads," she wrote in an e-mail interview. "It has taken
almost an hour to check my mail this morning=8AIt just keeps coming in like a=
n
e-mail bomb."=20
British e-mail screening specialist MessageLabs reported seeing 7,129 copie=
s
of the worm as of noon Monday British time.
"Although we have seen significant numbers of this virus in the U.S., we
believe that Europe is still waiting to feel the brunt of the SirCam virus,=
"
MessageLabs Chief Technology Officer Mark Sunner said in a statement.
Although SirCam continues to spread, it appears to be getting caught before
it can do much damage.
"We're seeing it bounce off the firewall," said David Perry, global directo=
r
of education for antivirus software maker Trend Micro. "I am not seeing any
reports of destructiveness."
Perry noted that while most viruses appear to come from someone the
recipient knows, this one can also come from strangers because it uses both
address books and information stored in the Web browser's cache files to
search for e-mail addresses.
"If you visit a Web page and there is in the HTML (code) an e-mail address
included...then that email will be among the recipients if the virus is
executed on your machine," Perry said.
As a result, SirCam is hitting individuals as well as corporations that use
Microsoft Outlook.=20
Trend Micro said late Monday that 2,117 people had reported infections to
its Web site in the past 24 hours, Perry said.
"That's up substantially in the past couple of hours," Perry said. "It's
still overshadowed by an outbreak of the Love Letter.A virus in Africa."
So far, the worm still can be recognized because the text of the message
contains one of three messages in either Spanish or English. They are "Hi!
How are You?" "I send you this file in order to have your advice" and "See
you later. Thanks."
MessageLabs said the English body text was present in 86 percent of the
copies it received, with the remaining 14 percent bearing the Spanish
translations.=20
Typically, variants crop up in which the body text of a worm is changed, bu=
t
Weafer said so far he has seen only the single strain of SirCam.
"I would not be surprised if we did see variants," he said.
While SirCam's self-propagation is typical of a worm, it also has several
characteristics of a virus, including the ability to attach itself to files=
.
Besides sending torrents of e-mail, SirCam can perform several destructive
acts based on a combination of arcane PC settings and chance. If the
infected PC uses the European date format (day/month/year), for example,
there is a 1-in-20 chance that the worm will delete all files and folders o=
n
the hard drive on Oct. 16.
The worm is also "network aware," Symantec reported, meaning it will search
for network resources and attempt to propagate itself to attached systems.
News.com's David Becker contributed to this report."
----------------------------------------------------------------------
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=========================================================================
Date: Mon, 23 Jul 2001 22:18:42 -0500
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: samantha pudge <[log in to unmask]>
Organization: QUALCOMM Eudora Web-Mail (http://www.eudoramail.com:80)
Subject: Re: Use of the emergency room
Mime-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
ira,
how do i find the article? sounds useful to have on file.
sami
--
On Mon, 23 Jul 2001 14:53:26 Ira Wile wrote:
>The American Parkinson's Disease Association, Inc. Educational supplement #16 which was received today has an excellent article about not going to the emergency room. I highly recommend it. I do not have a scanner or would have included it.
>
>
>
>Best,
>
>Ira
>
>----------------------------------------------------------------------
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>In the body of the message put: signoff parkinsn
>
Join 18 million Eudora users by signing up for a free Eudora Web-Mail account at http://www.eudoramail.com
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Date: Mon, 23 Jul 2001 22:19:26 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Diane Leeds <[log in to unmask]>
Subject: DBS Surgery
Comments: cc: Heather McGee <[log in to unmask]>,
Jan Carpenter <[log in to unmask]>
MIME-version: 1.0
Content-type: text/plain; charset=iso-8859-1
Content-transfer-encoding: 7BIT
Dear List Members,
This is a short follow-up to the letter that I wrote to the list about one
month ago after I came home following my second DBS Surgery. The hospital
where I had it done only allows the surgery to be done on two separate
occasions.
Well anyway since the 6th of July when I went in for an adjustment on the
stimulators, I started cutting back on my medicine again. There was not too
much more to cut because I had already worked down to a very small dose
daily. (compared to what I was taking before the surgery) Well I don't know
any other way to say it but SINCE THE 8TH OF JULY I HAVE NOT TAKEN ANY
PARKINSON MEDICINE!!!!!!!!! That is two weeks ago yesterday. I finally
came to the conclusion that the little amount of sinemet that I was taking
wasn't doing much good. And cutting out the medicine completely has enabled
me to eat protein again(I had cut back to practically no protein at all
before the surgery). I really didn't realize how much I missed it and how
important it is for my body. So now(you may wonder) what Parkinson symptoms
do I still have?. Well I have one that I never had before(although I know
it is quite common, just not for me) and that is an overproduction of
saliva. Also my mouth quivers sometimes which it used to do about five
years ago. I am stilll tired, but feeling better than I ever thought I
would again.
Believe me, my friends, I know that the above described symptoms are nothing
compared to what I had before and what some of you suffer with everyday.
In a way I feel bad writing this because I know that there are a lot of
people out there who could probably benefit from this surgery, but because
of finances and many other reasons, are unable to have it. I am so sorry
for any of you that are described in the previous sentence.
I won't have another adjustment for several weeks now, but I will let you
all know what things are like then. I know I am very fortunate and blessed
to have been able to have the surgeries.
Sincerely,
Diane Leeds
[log in to unmask]
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 01:33:54 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re Jodie Repostings
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
I got 3 of my emails re Don's palliodotomy (sp) and query re zippered
attachment from Jodie Davis, [log in to unmask], can't type all
this, All had attachments. Jodie if you are out there I"m deleting your
repostings of my emails. R
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 01:40:02 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: VIRUS ALERT:SirCam
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Don, I'm getting repostings from Jodie Davis with attachments. I've deleted
them. Rayilyn
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 01:22:03 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Deanna Zimmer <[log in to unmask]>
Organization: Westies Unlimited
Subject: Re: DBS Surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Diane, sorry I missed some of the letters you wrote before. Is this the surgery
for the brain stimulators that are made by the pacemaker folks, Medtronics? Am
interested in hearing from folks that have had this procedure and how far
advanced you were in PD before you are allowed to have the surgery? Thanks.
Dena
Diane Leeds wrote:
> Dear List Members,
>
> This is a short follow-up to the letter that I wrote to the list about one
> month ago after I came home following my second DBS Surgery. The hospital
> where I had it done only allows the surgery to be done on two separate
> occasions.
>
> Well anyway since the 6th of July when I went in for an adjustment on the
> stimulators, I started cutting back on my medicine again. There was not too
> much more to cut because I had already worked down to a very small dose
> daily. (compared to what I was taking before the surgery) Well I don't know
> any other way to say it but SINCE THE 8TH OF JULY I HAVE NOT TAKEN ANY
> PARKINSON MEDICINE!!!!!!!!! That is two weeks ago yesterday. I finally
> came to the conclusion that the little amount of sinemet that I was taking
> wasn't doing much good. And cutting out the medicine completely has enabled
> me to eat protein again(I had cut back to practically no protein at all
> before the surgery). I really didn't realize how much I missed it and how
> important it is for my body. So now(you may wonder) what Parkinson symptoms
> do I still have?. Well I have one that I never had before(although I know
> it is quite common, just not for me) and that is an overproduction of
> saliva. Also my mouth quivers sometimes which it used to do about five
> years ago. I am stilll tired, but feeling better than I ever thought I
> would again.
>
> Believe me, my friends, I know that the above described symptoms are nothing
> compared to what I had before and what some of you suffer with everyday.
> In a way I feel bad writing this because I know that there are a lot of
> people out there who could probably benefit from this surgery, but because
> of finances and many other reasons, are unable to have it. I am so sorry
> for any of you that are described in the previous sentence.
>
> I won't have another adjustment for several weeks now, but I will let you
> all know what things are like then. I know I am very fortunate and blessed
> to have been able to have the surgeries.
>
> Sincerely,
>
> Diane Leeds
> [log in to unmask]
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 02:49:36 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Sid Levin <[log in to unmask]>
Subject: Re: PARKINSN Digest - 23 Jul 2001 - Special issue (#2001-443)
Comments: cc: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Ray,
Who is your Congressman/woman?
Has he or she taken a position yet?
You can't pester them into voting your way, you've got to try and convince
them that it's the RIGHT thing to do.
How? I suggest you get a newspaper to cover a visit to a Children's Hospital
and a caption about kids are Potential adults and they are suffering now.
Or write to your Congressman with a copy to Letters to the Editor, suggesting
he go visit a Children's Hospital and explain to those kids why they must
suffer. Tell him to explain why people would appaarently prefer that a
surplus blastocyst be incinerated instead of utilized to help find a cure for
the kid's malady.
Please do not blame the Republican Party. The bill we're fighting for is by
Senator Specter,, who is Republican and we need every darn Republican we can
get. Also Greens and Democrats and even the Wobblies of the world. .
El Presidente is not the Party, he is the figurehead for the party.
Happy hunting.
Sid Levin
----------------------------------------------------------------------
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Date: Tue, 24 Jul 2001 04:18:53 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Sid Levin <[log in to unmask]>
Subject: That darn virus again!
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
This is the third email I received from someone I dont know, telling me to to
look at the attachment.
It came from [log in to unmask]
The truly odd part of this, all three repeated to me things I written in to
PIEN,
I dont think I'm infected because I followed the three rules,
1) Dont open attachments or take candy from a stranger.
2) If it's from someone you know, don't eat the candy unless its wrapped in
the original wrapper or you check with your friend, the candy giver
3) If it's from someone you know, and you were expecting it, eat the candy
or open the attachment.
If a portion of this letter comes back to me with an unexplained attachment,
I will definitely conclude the Toronto Server is bugged.
Sid
----------------------------------------------------------------------
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Date: Tue, 24 Jul 2001 05:06:25 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Sid Levin <[log in to unmask]>
Subject: More virus details:
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
The file name in two of the three phony emails I received was:
s3msong.MP3.pif (13312 bytes).
I don't recall ever encountering a pif suffix before.
Can someone explain it to me?
I thought bugs came in .exe files.
What language is .pif used for?
Sid
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 02:31:31 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: NEWS: AUSTRLIA: Small Biotech Company Develops New Stem Cell Lines
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
WIRE: 07/23/2001 6:06 pm ET
Small Biotech Company Develops New Stem Cell Lines
By Toni Clarke
NEW YORK (Reuters) - BresaGen Ltd., a small Australia-based
biotechnology company, said on Monday it has developed
four human embryonic stem cell lines, joining a handful
of companies worldwide to have cloned human cells
for medical research.
The company, which is listed on the Australian Stock Exchange
and plans to list in the U.S. shortly, said the breakthrough
is a critical step in its research for treatments
of neurodegenerative conditions such as Parkinson's disease,
stroke and spinal cord injury.
The company said the breakthrough occurred at its facility
in Athens, Georgia. The company established a laboratory
in the U.S. early this year.
The development comes as regulators in Australia and the
U.S. debate whether to allow federal funding for embryonic
stem cell research. Stem cells are parent cells whose progeny
can turn into any of the 220 cell types in the body. They can
reproduce themselves ad infinitum, providing material that
researchers believe could help fight disease.
"Our particular interest is in learning how to make cells
that are useful in treating spinal cord injuries and diseases
such as Parkinson's," said John Smeaton, the company's
chief executive, who splits his time between Georgia
and Adelaide. "If we can turn our cells into pure populations
of other types of cells, then that population could be useful
for therapeutic purposes."
The creation of pure, stable cell lines is not easy. Nature
magazine estimates there are around 20 human cell lines
world wide. Each line originates from a cell taken from the inside
of a one- to five-day embryo. Smeaton said BresaGen's supply
of embryos come from an in-vitro fertilization clinic. He said
the company only uses embryos that would have been
discarded y the clinic.
BresaGen is a tiny company, with just $1 million in revenue
in 2000. Yet it has already made news as the company to
clone Australia's first pig. It also boasts Steven Stice,
a professor at University of Georgia and the first person
in the world to clone cattle, as a key consultant.
BresaGen said it plans to license access to its cell lines
to researchers or to trade access in return for certain rights
to any products developed from them.
The company is working to prove it can cure humans from
Parkinson's disease in the same way it has cured mice.
"There has been some research in this area and the results
have been mixed," said Smeaton. "We're trying to build on
that research."
The company's next step is to target the exact place in the brain
to insert the new cells. It is working with five universities
to develop a technology. It is also working on a technology
that would grow cell lines using no material from animals.
To date, all human cell lines have been developed using a
so-called feeder-layer of nutrients that come from mice.
By the time BresaGen goes into human trials -- which
Smeaton estimates could be in two to three years time -- it
wants to have replaced mouse-based feeder-layer with
a human feeder-layer. That's because regulators are concerned
that using mice or other animals could result in viruses
jumping into the human population.
"If we developed a product using the method we use now it
would be treated much more strictly by regulators than if we
used cells which had had no contact with animal matter,"
Smeaton said.
Developing a human-based feeder-layer, however, is not just
a matter of transferring the technique used to produce mouse
nutrients. That's because the feeder-layers come from mice that
are at a late stage of embryonic development. They are about to
be born.
"Obviously you can't do that with human embryos," Smeaton
said. However, he said BresaGen is a matter of months away
from completing an acceptable alternative method
of producing human nutrients.
"We're well down the track to doing that," Smeaton said.
"We're talking months rather than years."
SOURCE: Reuters News Service
http://www.abcnews.go.com/wire/US/reuters20010723_491.html
* * *
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 09:10:58 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Use of the emergency room
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Samantha-- just call the APDA at : 1-800-223-2732 and request
Educational supplement #16 . I also received it, as I think everyone on
their mailing list would have.
>ira,
>
>how do i find the article? sounds useful to have on file.
>
>sami
>--
>
>On Mon, 23 Jul 2001 14:53:26 Ira Wile wrote:
>>The American Parkinson's Disease Association, Inc. Educational supplement
>>#16 which was received today has an excellent article about not going to
>>the emergency room. I highly recommend it. I do not have a scanner or
>>would have included it.
Camilla Flintermann, former CG for Peter 83/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
and also at http://members.tripod.lycos.nl/genugten/flinterm.htm
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at http://www.pdcaregiver.org
----------------------------------------------------------------------
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Date: Tue, 24 Jul 2001 10:41:54 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Ed Grskovich <[log in to unmask]>
Subject: Re: More virus details:
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
In a message dated 7/24/01 4:15:34 AM, [log in to unmask] writes:
<< pif suffix >>
From: http://www.computeruser.com/news/00/10/27/news10.html
Daily News
Kaspersky Lab Warns Over PIF Format Files
By Sylvia Dennis
October 27, 2000
As new variants of the infamous ILOVEYOU virus continue to arrive on users'
PCs with monotonous regularity, Kaspersky Lab has warned users to be on the
lookout for a new generation of malware using the program information file
(PIF) file format.
The Russian IT security specialist said that while there are some quite
legitimate files being sent by e-mail with the PIF file extension, PC users
should nevertheless be very wary of any file with a PIF extension.
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 11:16:05 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: [log in to unmask]
Subject: Pig Cell Therapy & The Law
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Hi Group -
Over the past weekend a documentary film crew, from PBS, was in Newport to
interview yours truly about my pig cell implantation surgery for PD. Believe
it or not, we will soon be at that xenotransplantation's 5th anniversary.
It was a very interesting session as it was largely concerned with some
difficult legal questions. We discussed, for example, whether or not living
organisms can be patented, who will pay the costs for the research, and what
part of the population will receive "spare parts" harvested from animals.
The first part of the interview took place in my house and at the Newport
harbor's waterfront. The second session was taped at my regular family
doctor's office. All in all it was a good, but tiring, day. We started at
9:00 AM and finished at 4:30 PM. You can't imagine how much equipment is
involved!
This film will probably not be released for 6 (or more) months. Based on
past experience this type of program can take up to a year in editing and
production.
For those who have not seen it, my online diary of experiences with this
surgical procedure can be read at the URL below.
<A HREF="http://www.geocities.com/jimcfinn/index.html">
http://www.geocities.com/jimcfinn/index.html</A>
Regards -
Jim Finn
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 18:55:34 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Jacob M. Drollinger" <[log in to unmask]>
Subject: Protocol for phase III trials
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Dear friends,
What, generally, is the protocol for phase III drug trials?
Jacob
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 20:20:39 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: DBS Surgery
MIME-Version: 1.0
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Diane, does Medicare pay for DBS or palliodotomies? Can anyone tell me.
Rayilyn
----------------------------------------------------------------------
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=========================================================================
Date: Tue, 24 Jul 2001 18:30:01 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Diane Leeds <[log in to unmask]>
Subject: Re: DBS Surgery
MIME-version: 1.0
Content-type: text/plain; charset=iso-8859-1
Content-transfer-encoding: 7BIT
Hi Rayilyn,
As far as I know they do pay for the DBS. Don't know about pallodotomies.
Diane
----- Original Message -----
From: "Rayilyn Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 24, 2001 5:20 PM
Subject: Re: DBS Surgery
> Diane, does Medicare pay for DBS or palliodotomies? Can anyone tell me.
> Rayilyn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
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Date: Tue, 24 Jul 2001 18:44:54 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Re: Protocol for phase III trials
Comments: cc: "Jacob M. Drollinger" <[log in to unmask]>
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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On 24 Jul 2001, at 18:55, Jacob M. Drollinger wrote:
> Dear friends,
>
> What, generally, is the protocol for phase III drug trials?
>
> Jacob
>
Hi Jacob and Good Evening All,
On the WWWeb, there is a document "Good Clinical Practice".
THERAPEUTIC PRODUCTS DIRECTORATE GUIDELINES
ICH HARMONIZED TRIPARTITE GUIDELINE
INTERNATIONAL CONFERENCE ON HARMONISATION OF
TECHNICAL REQUIREMENTS FOR REGISTRATION OF
PHARMACEUTICALS FOR HUMAN USE
GOOD CLINICAL PRACTICE:
CONSOLIDATED GUIDELINE
Published by authority of the
Minister of Health
http://www.ncehr-cnerh.org/english/gcp/index.htm
click on Table of Contents
Scroll down to:
6. CLINICAL TRIAL PROTOCOL AND PROTOCOL
AMENDMENT(S)
********
How to write the Clinical Trial
http://www.worldmedic.com/research%25/howtowrite.htm
About Clinical Trials
http://www.drugstudycentral.com/clinitrial.htm
NIH Guide: PARKINSON DISEASE NEUROPROTECTION
CLINICAL TRIAL: CLINICAL CENTERS
http://grants.nih.gov/grants/guide/rfa-files/RFA-NS-02-010.html
Search Clinical Trials
http://clinicaltrials.gov/ct/gui
Search on parkinson
(Later scroll down and click on Resource - Understanding Clinical Trials)
Amgen Clinical Trials
http://www.amgentrials.com/index.html
http://www.amgentrials.com/patients/index.html
What is a Clinical Trial?
http://www.amgentrials.com/patients/whatistrial.html
I hope this will answer most of your questions.
Cheers ........ murray
[log in to unmask]
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Date: Tue, 24 Jul 2001 20:45:38 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: John Cottingham
<[log in to unmask]>
Subject: Re: Protocol for phase III trials
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Generally Phase III trials involve a period on placebo/medicine, a wash out
period and then another period with placebo/medicine. This is to determine
if the medicine works. Neither your or the researcher know when you are
getting the medicine or the placebo.
From this trial they determine the effectiveness of the medicine vs placebo.
One would suppose that statistically more people would do better on the
medicine but some do better on the placebo. If the compound works and is
statistically better than placebo, they go on to Phase IV studies.
Phase IV studies which break down the population by age and ethnicity are
used to determine optional dosage for the different populations.
John Cottingham
----------------------------------------------------------------------
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Date: Tue, 24 Jul 2001 20:53:54 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: John Cottingham
<[log in to unmask]>
Subject: Re: DBS Surgery
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Yes Rayilyn, Medicare does pay their portion of the cost of DBS. If you have
supplemental insurance it generally pays the rest. Medicare Part A
deductible is $792. If your supplement pays this deductible there should be
no out of pocket expense for you.
If your supplemental insurance doesn't pay the deductible, you are expected
to pay it. If the surgery is done at two different times, your out of pocket
expense could be $792 X 2.
If you don't have a supplemental policy it is possible for the hospital and
doctors to expect you pay the difference medicare doesn't pay.
Different facilities have different screening criteria for access to this
procedure.
In my group, were folks with ET and young and old parkies.
John Cottingham
----------------------------------------------------------------------
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Date: Tue, 24 Jul 2001 22:11:28 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Schaaf Angus / Meadow Creek Ranch <[log in to unmask]>
Subject: Virus still going around !
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Quick report - just got an email from Jodie Davis from Park AU with a =
"take a look to attachment" - Another who is probably unaware ????
----------------------------------------------------------------------
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Date: Wed, 25 Jul 2001 01:11:54 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: Preimplantation Genetic Diagnosis
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Camilla and all, it seems Ray's point has been lost like a lot of others.
Tonite, Gephardt, who supports scr mentioned abortion as part of the equation
or argument. I try to explain when I can to everyone I talk to. All
people seem to know is Michael J. Fox is doing something about PD or that it
is about fetuses or have never heard of scr. Didn't someone post that in
Australia these petrie dish blastocysts were being done without sperm?
Thought I read that. The local paper butchers my ltrs when they print them.
Rayilyn
----------------------------------------------------------------------
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Date: Wed, 25 Jul 2001 00:52:38 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Human stem cells help paralyzed rats, mice to walk
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Human stem cells help paralyzed rats, mice to walk
Johns Hopkins study could assist people, be a key to funding
Wednesday, July 25, 2001
By Michael Woods, Block News Alliance
BAR HARBOR, Maine -- Johns Hopkins University scientists
yesterday reported using human stem cells to restore the ability
to walk in rats and mice paralyzed by nerve damage like that
found in several human diseases.
"So far as we know, this is the first time human stem cells
have produced recovery from a disease in any animal, "
said head researcher, Dr. John P. Gearhart.
Gearhart, an internationally known stem cell authority,
said the achievement addresses one of the major objections
to federal funding for stem cell research.
Human embryonic stem cells are "building block" cells
that develop into every other kind of cell found in the body.
Researchers believe they can make replacements for body
tissue lost to disease or injury -- including whole new hearts,
kidneys and other organs for transplantation.
Nevertheless, the federal government has refused to fund
embryonic stem cell research because aborted fetuses are
a major source of the cells. They can be obtained in other ways,
one of which involves destroying human embryos stored
in fertility clinics.
The Hopkins research was done with stem cells obtained
from human fetuses aborted at 5-8 weeks of age.
One argument against federal funding, Gearhart noted,
is that human stem cells have not yet been shown effective
in treating a disease. The new findings weaken that argument,
he said.
"It's one thing to see evidence that stem cells work in laboratory
culture diseases, " Gearhart said at a renowned conference
on genetics, this year's being the 42nd Short Course in Medical
and Experimental Mammalian Genetics. "And it's quite another
to see actual function restored in an animal."
Videos showed the reversal of paralysis in the laboratory animals
to be dramatic. Researchers injected human neural stem cells
into the spinal fluid of about 80 rats and mice paralyzed by a virus
that attacks and destroys nerve cells that control
muscle movement.
Normally, animals infected with the Sindbis virus permanently
lose the ability to move their limbs, as neurons leading from
the spinal cord to muscles deteriorate. Animals drag limp legs
and feet behind them.
All of the animals treated with human embryonic stem cells
recovered the ability to walk, although not with a normal gait.
Researchers believe the cells may have reversed paralysis
in two ways. They may have grown into new rodent nerve
cells that replaced the cells killed by the Sindbis virus
or they may have produced chemicals that signaled the
rodent nerve cells to start growing.
Rodents infected with Sindbis virus are used as a model
for spinal motor atrophy. It is the most common inherited
neurological disease and the most common inherited cause
of infant death.
SMA affects as many as 1 in 6,000 infants, causing nerves
leading from the spinal cord to the muscles to deteriorate.
Children with SMA are born weak, have difficulty swallowing,
breathing and walking. Most die in infancy, although some
live into early childhood.
Gearhart said stem cell research may have its most immediate
application in treating SMA and a related condition, amyotrophic
lateral sclerosis, also called Lou Gehrig's disease.
ALS affects up to 20,000 adults, leading to whole-body paralysis
and death as motor nerves linking the brain, spinal cord and
muscles die.
Project ALS, a New York City organization that battles the
disease, funded the Hopkins research. The treatment could
be tested on humans within a few years, Gearhart said.
He predicted the ethical and religious concerns over stem cell
research will vanish as scientists discover ways of making
different kinds of cells without using embryos.
But he emphasized that federal funding of embryonic stem cell
research is essential to developing those alternative techniques
-- a step that could take 10 years with ample funding and longer
without it.
SOURCE: The Pittsburgh Post-Gazette
http://www.post-gazette.com/healthscience/20010725woodshealth3p3.asp
* * *
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Date: Wed, 25 Jul 2001 00:52:54 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: House Panel Passes Anti-Cloning Bill
MIME-Version: 1.0
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House Panel Passes Anti-Cloning Bill
By JANELLE CARTER
Associated Press Writer
WASHINGTON (AP)--The House Judiciary Committee advanced
a bill Tuesday that would prohibit human cloning, following
a lengthy debate that also delved into stem cell research.
In passing the bill 18-11, lawmakers said they wanted to keep
scientists from applying the same technique on humans that
was used to clone Dolly the sheep in 1997. The measure now
goes before the full House.
Health and Human Services Secretary Tommy Thompson
praised the committee, saying its action puts Congress on the
right track toward prohibiting the cloning of human beings.
``Supporting medical research to combat human disease
and infirmity is immensely important to this administration,''
he said. ``However, science does not and cannot proceed
in a moral vacuum. The ethical issues posed by human cloning
and the implications for the child creates are particularly
troubling.''
But as the cloning bill has moved through the House,
a debate has arisen over stem cell research.
President Bush will soon decide whether to permit federal
funds for medical research on stem cells pulled from human
embryos. Just Monday, Pope John Paul II urged Bush
to reject the idea.
As the president has grappled with his decision, so have
lawmakers, including many staunch anti-abortion
Republicans. In recent weeks, some--like Sen. Orrin Hatch
of Utah--have announced their support for stem cell research.
Tuesday in the House, many Democrats voiced concern
that an outright ban on human cloning would also prohibit
stem cell and other types of research.
``This may be known as the point in the meeting this morning
when we try to play doctor and that's bad for American patients,''
said Rep. John Conyers of Michigan, the leading Democrat
on the committee. ``This would stop ongoing studies designed
to help people (that are) suffering.''
Republican members said action is needed before science
advances to the point where humans are cloned. They said
the bill only affects human cloning and does not restrict the use
of cloning technology to produce molecules, DNA, cells other
than human embryos, tissues, organs, plants or animals
other than humans.
Stem cells are building blocks for all human tissue. The most
versatile cells are derived from embryos discarded at fertility
clinics, but some abortion opponents say it is wrong to use
them for research.
Opponents of the bill argued that the use of cloning technology
to create embryos for research purposes should be allowed.
The Biotechnology Industry Association voiced its opposition
to the bill in a letter to committee members that stated,
``Cloning techniques in research are integral to the production
of breakthrough medicines, diagnostics and vaccines to treat
heart attacks, various cancers, Alzheimer's, diabetes, hepatitis
and other diseases.''
The cloning research could also produce replacement skin,
cartilage and bone tissue for burn and accident victims,
the industry said.
``In addition to shutting the door on important research,
(the bill) will limit patients' access to possibly life saving
products,'' the industry said.
For some, the debate became emotional. ``An embryo is
human life. It is not a speck of dust,'' said Rep. Henry Hyde,
an Illinois Republican and outspoken abortion foe.
``Is it appropriate to create human life in a petri dish and then
destroy that life to get at a cell? I say no.''
But Rep. Jerrold Nadler, a New York Democrat, retorted,
``An embryo is a clump of a few cells. How can you say to
somebody who you could cure of a deadly disease 'we will
not cure you because you are less important than
a clump of cells.'''
Democrats tried unsuccessfully several times during the
hearing to offer amendments that would exempt research
techniques from the ban.
Meanwhile, the committee waded into another murky topic
by passing by a voice vote a bill that would ensure that
a fetus breathing when it leaves a mother's womb, even during
an abortion procedure, would be treated as a person under
federal law.
Nadler and other Democrats had initially opposed the measure,
saying it was an attempt to chip away at abortion rights
enshrined in Roe v. Wade. Tuesday, Nadler told the committee,
``Whatever concerns anyone may have had that this might
become some clever way to undermine the rights protected
under Roe v. Wade have, I think, been addressed. ... I have
little doubt that it will be passed without much controversy.''
The Senate has already attached the measure to patients'
rights legislation that passed earlier this month.
___
The Human Cloning Prohibition Act is H.R. 2505.
The Born-Alive Infants Protection Act is H.R. 2175.
On the Net:
The text of the bills can be found at
http://thomas.loc.gov
Judiciary Committee:
http://www.house.gov/judiciary/
AP-NY-07-24-01 2255EDT
SOURCE: The Waco Tribune / Associated Press
http://www.wacotrib.com/news/ap_story.html/Washington/AP.V3743.AP-Cloning-Abortio.html
* * *
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Wed, 25 Jul 2001 01:21:48 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Discovery Health Channel and Yale School of Medicine
partnership...
MIME-Version: 1.0
Content-type: text/plain; charset=ISO-8859-1
Content-transfer-encoding: Quoted-printable
Title:=A0
Discovery Health and Yale School of Medicine Form Groundbreaking
Partnership To Provide On-Line/On-Air Medical Expertise -- Families,
Children and Cutting Edge Medicine Highlighted in Website Presence
Summary:=A0
BETHESDA, Md., Jul 24, 2001 /PRNewswire via COMTEX/ --
Discovery Health Channel and Yale School of Medicine today
announced a groundbreaking partnership that combines the
knowledge and expertise of the Yale faculty with the far-reaching
influence of the Discovery Health Channel. In addition to extensive
use of Yale professors throughout Discovery Health programming,
the partnership calls for a significant Yale presence on the channel's
companion website, discoveryhealth.com.
SOURCE Discovery Health Channel; Yale School of Medicine
Web Sites:
http://www.discoveryhealth.com
http://health.discovery.com/
* * *
----------------------------------------------------------------------
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=========================================================================
Date: Fri, 20 Jul 2001 09:36:37 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: janet dowell <[log in to unmask]>
Subject: Re: Crawly Feeling
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
hi my name is janet-i go by wildjan ha ha-i an 49 and have hd pd for 14 y=
ears. in many ways i am lucky-i never have had tremor-howevr i have free=
zing real bad-my knees are very callosed from falling on them=3Dgood bon=
es-have nrver broken any bones. i am very activ-i bowl on a league and i =
ride my mountain bike-just rode in the big STP seattle to portland bicycl=
e challenge. i represented the northwest parkinsons foundation on TEAM P=
ARKINSONS . this was my 2nd year . would enjoy communicating with othr ac=
tive pd patints thnx-janet =20
----- Original Message -----
From: Ed Grskovich
Sent: Thursday, July 19, 2001 8:14 PM
To: [log in to unmask]
Subject: Crawly Feeling
In a message dated 7/19/01 8:49:18 PM, [log in to unmask] writes:
<< crawly feeling >>
Dear Jacob,
What a great description! Over the next few months, neurologists will ha=
ve
to add that word to their charts as we all now know what to call it. I ma=
y
have had something like that (to me, a claustrophobic feeling), before we
knew I had PD. My Internist prescribed Clonazepam (Klonopin)--an anti-an=
xity
drug. I take one-half of a 1MG ahead of time when I expect trouble. For=
me,
it works quickly. Later, the Neuro agreed that It was OK to continue to u=
se
Clonazepam, as needed, along with my Requip.
I have read that, to some, this class of drugs, benzodiazepines, can be
addicting, but I can now go for weeks without even that half pill--but, I
always try to remember to have some around in my pocket before visits to =
the
dentist, crowded places, etc.
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
.ca
In the body of the message put: signoff parkinsnGet more from the Web. F=
REE MSN Explorer download : http://explorer.msn.com
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Fri, 20 Jul 2001 09:45:07 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: janet dowell <[log in to unmask]>
Subject: Re: young parkinson's/ New Book on sale
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
i too am a yopd patient-. i am now 49 and have h pd for 14 years. it's a=
struggle,but i keep ver active. i bowl aqnd ride a bike; shhot poland da=
rts and even tgo dancing!!! you are only limited by your self don't let i=
t get you email me if you would like janet
----- Original Message -----
From: Ivan M Suzman
Sent: Friday, July 20, 2001 7:46 AM
To: [log in to unmask]
Subject: Re: young parkinson's/ New Book on sale
Hi Jodie,
Your young-onset Parkinsonian's friend can
try to go to the web at Amazon.com , or contact
Hunter Press in Alameda , California, and
order a wonderful new book, "When Parkinson's Strikes Early ,"
by Linda Herman and Barbara Blake-Krebs.
Another suggestion is that the American Parkinson's Disease Association
has a Young Parkinson's newsletter and
excellent help available from its YOPD office
in Illinois.
The new YOPD book is being published in August.
There are many contributers, all with YOPD.
Sincerely,
Ivan Suzman
51-39-36
----------------------------------------------------------------------
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.ca
In the body of the message put: signoff parkinsnGet more from the Web. F=
REE MSN Explorer download : http://explorer.msn.com
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 09:39:10 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: News <[log in to unmask]>
Subject: Iron-storing disorders shed light on Parkinson's
MIME-Version: 1.0
Content-Type: text/plain; charset="Windows-1252"
Content-Transfer-Encoding: 7bit
Iron-storing disorders shed light on Parkinson's
July 24, 2001
NEW YORK (Reuters Health) - Researchers have uncovered
genetic
defects underlying two rare disorders in which iron
builds up in brain
cells, resulting in deteriorating brain function.
The findings may help researchers understand more
common
disorders, such as Parkinson's, Huntington's and
Alzheimer's disease,
which also involve increased levels of iron in brain
cells, researchers
say.
The two studies were reported July 23 in an online
publication of Nature
Genetics. In the first study, Dr. John Burn from the
Institute of Human
Genetics, Newcastle upon Tyne, UK, and his colleagues
identified a
genetic mutation that resulted in patients having
symptoms similar to
those of people with Huntington's or Parkinson's
disease.
The symptoms of the disorder, called adult-onset basal
ganglia
disease, include involuntary movements, spasticity and
rigidity, and
typically strike patients between 40 to 55 years of
age. However, the
patients do not show a decline in reasoning ability.
Burn's team examined genetic material from five
patients with the
disorder and compared it with that of three healthy
people. The
investigators found that all of the affected
individuals had a defective
version of an iron-storing protein, which could cause
iron to accumulate
in brain cells.
In the second paper, Dr. Susan J. Hayflick from the
Oregon Health and
Science University in Portland, and colleagues
describe their discovery
of the genetic defect underlying a rare disorder
called
Hallervorden-Spatz syndrome (HSS). These patients,
numbering about
100 in the US, also suffer severe damaging effects
from a buildup of
iron in their brain cells.
"People with Parkinson's disease have increases of
iron in their brain in
some of the same areas in which it is increased in
HSS," Hayflick told
Reuters Health. "We are speculating that some
variation in this gene
(that causes HSS) may be at the basis of the common
forms of
Parkinson's disease," she said.
"We are actually looking now at a group of Parkinson's
patients to see
if there are changes in this gene," Hayflick said. "We
don't think this
gene is going to be the cause of all Parkinson's
disease, but it may be
a significant contributor," she said.
According to Hayflick, the iron buildup is caused by a
mutated protein
that is unable to break down a B vitamin called
pantothenic acid, or
vitamin B5. This defect, through a chain of events,
may trigger the
accumulation of iron, she said.
Hayflick did not want to speculate on whether taking
pantothenic acid
as a vitamin supplement may help or hinder HSS or
Parkinson's, but
she said, "we are working to develop compounds (based
on
pantothenic acid) that would be able to get into cells
in order to treat
the disorder(s)."
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 08:46:30 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Paul Ayers <[log in to unmask]>
Subject: Help!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Dear List,
Well once again I turn the list for help. At 51 years, I have been caught up in the new American economy called "corporate downsizing". It came as a real shock. As I sat in the "downsizing" meeting, my mind swirled, What am I going to do? I can't write, so filling out an employment application is impossible. How will I ever sit still through an interview? If I can't fill out an app, does that mean I am disabled? So I turn to you the list for help. Has this happened to any of you? Do you have any legal and moral experience. I sit here at home not sure what to do. I have plenty of confidence that my mind works just fine, but the PD has taken its toll, I would appreciate any info, help, or suggestions.
Thank You,
Paul Ayers [log in to unmask]
---------------------------------
Do You Yahoo!?
Make international calls for as low as $.04/minute with Yahoo! Messenger
http://phonecard.yahoo.com/
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 10:26:54 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: David Moreland <[log in to unmask]>
Subject: STN DBS, a question
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Here is a question; has anyone on this list had a STN DBS after having a
bilateral Pallidotomy Or does someone know of a person who has? If So, What
were the rersults? Were they positive? You may write me off the list
Yours and His
David L Moreland
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 10:31:48 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Travels_With_Parkinsons Talk-radio_With_A_Purpose
<[log in to unmask]>
Subject: Tomorrow! on Travels With Parkinson's - Talk-radio With a Purpose
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Travels With Parkinson's
~
Talk-radio With a Purpose
Talk-radio?
Travels With Parkinson's
is a
weekly
talk-radio show
the first
of its kind
to be broadcast
Live!
over the World Wide Web
using AudioStreaming
technology.
I am your host, Leonard
Casavant
also known as "Chy"
and I have had Parkinson's disease for
10 years.
Join me
while I travel through
cyberspace
to talk with others who are involved with
Parkinson's.
With a Purpose?
Yup, three of them.
1. Raise awareness and understanding of
Parkinson's disease.
2. Fund the research.
3. Find the cure.
Who's On the Show This Week?
BROADCAST WEEK 50: ENDING
2001/07/28
Show 50a
Thursday 26th July 2001
from 9:00 am to 10:00 am EDT
Live!
Broadcast
from CHILLI-cothe ILLI-nois
from the home of
Joan E. Blessington Snyder
recipient
of the
Sidney Dorros Memorial Award
Listen to the broadcast on
VoiceAmerica
Phone in to talk to Chy and his
guests
Joan Snyder, Donna Dorros and Peggy
Willocks, toll-free on
1-888-355-5204
Add your voice to the show!
Show 50b
Thursday 26th July 2001
from 9:00 pm to 10:00 pm EDT
Taped!
as originally broadcast this
morning!
from CHILLI-cothe ILLI-nois
from the home of
Joan E. Blessington Snyder
recipient
of the
Sidney Dorros Memorial Award
Listen to the re-broadcast on
VoiceAmerica
Sorry no call-ins!
What's New?
See the New! "What's New?"
Page
What shows are you planning for the
future?
Join our intrepid cyber
traveler
"Chy"
that talk-radio guy
as he seeks the answers to these
questions
...
What's Happening in Canada?
What's Happening Simultaneously in New York
and Florida?
What's Happening with Tulips?
What's Happening in September?
How Can I Listen to the Live! Shows
On-Air?
To listen Live!
point your StreamAudio-enabled web
browser to:
VoiceAmerica
To talk Live!
point your telephone toll-free
to:
1-888-355-5204
Who Else Has Been On Your
Show?
We have been honoured
by many People With Parkinson's
(PWP)
as well as Care-Givers (CG), medical
professionals,
parkinson organisation representatives and
patient advocates,
all actively pursuing our shared
goals.
For more details,
including links to any World Wide Web sites
affiliated with our
guests, see the
Programme Schedule.
How Is This Project Being
Funded?
Through donations from people like you
and me.
I am constantly seeking sponsors to ensure that
the show goes on!
The shows started on 2000/08/06, and will keep
on going as long as
the interest and support is out
there.
Travels With Parkinson's is a
non-profit project
supported solely by volunteers
and every individual
Parky Star
Whom May I Contact?
[image of chy's hat] Phone:
517-448-7752
Leonard "Chy" Casavant E-Mail:
115 Cross Street [log in to unmask]
[image of gaited horse]
Hudson, Michigan, WebSite:
49247 Travels With
USA Parkinson's
Webspinner Updated
Pages Visits
2001/01/03 2001/07/25 Search:
102 [Site Meter]
This
BrainTalk
Communities
WebRing site
is owned by
Leonard
'Chy'
Casavant
[logo and link to braintalk.org] | List All
[logo and link to
braintalk.org]
Sites | View
Statistics |
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| Previous |
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|
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Programme Schedule |
PARKYTHON 2001 | VoiceAmerica |
http://www.geocities.com/chycasavant/
__________________________________________________
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----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Wed, 25 Jul 2001 12:48:44 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Sue Weiler <[log in to unmask]>
Subject: Re: Help!!
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"; format=flowed
Paul,
I was forced to quit by my employer because they were worried about their
insurance rates. It took almost a year, but I won a discrimination suit
against them this Spring.
I had applied for lots of jobs. I tried to sit on my hands, but they
noticed anyway. No one hired me, so after 18 months I gave up and applied
to our state department of vocational rehab. They have helped me to set up
an at home universal building design business with a computer aided
drafting program. They purchased an ergonomic chair, a nice microphone
for future voice activated programs and paid for half of my speedy new
computer.
I know, with a few adaptations (I can't write legibly either), I could have
continued with my original job. I also believe I could have done the jobs
that I applied for. It is very unfair to be treated this way. I got mad
and I got even. My hope is that my former employer will at least think
twice before trying the lousy tactics, with another disabled employee, that
they used to get me to quit.
I feel for you. I don't know what you need to do in your situation, but
maybe my story will show you that, with some effort, there is life after
downsizing.
Sue
PS I am 54 and receiving SSDI unless & until my fledgling business takes off.
At 08:46 AM 7/25/2001 -0700, you wrote:
>Dear List,
>
>Well once again I turn the list for help. At 51 years, I have been caught
>up in the new American economy called "corporate downsizing". It came as
>a real shock. As I sat in the "downsizing" meeting, my mind swirled, What
>am I going to do? I can't write, so filling out an employment application
>is impossible. How will I ever sit still through an interview? If I
>can't fill out an app, does that mean I am disabled? So I turn to you the
>list for help. Has this happened to any of you? Do you have any legal and
>moral experience. I sit here at home not sure what to do. I have plenty
>of confidence that my mind works just fine, but the PD has taken its
>toll, I would appreciate any info, help, or suggestions.
>
>Thank You,
>
>Paul Ayers [log in to unmask]
>
>
>
>
>
>---------------------------------
>Do You Yahoo!?
>Make international calls for as low as $.04/minute with Yahoo! Messenger
>http://phonecard.yahoo.com/
>
>----------------------------------------------------------------------
>To sign-off Parkinsn send a message to: mailto:[log in to unmask]
>In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
=========================================================================
Date: Wed, 25 Jul 2001 14:55:35 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Lanny D. Weddel" <[log in to unmask]>
Subject: Re: Help!!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Paul: be sure to look thoroughly at your company's Long Term Disability
plan and go for it before you are separated. There should be a wealth of
info coming out here as soon as other list members see your request. Your
dilema is not new.
Lanny D. Weddel
[log in to unmask]
----- Original Message -----
From: "Paul Ayers" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, July 25, 2001 10:46 AM
Subject: Help!!
> Dear List,
>
> Well once again I turn the list for help. At 51 years, I have been caught
up in the new American economy called "corporate downsizing". It came as a
real shock. As I sat in the "downsizing" meeting, my mind swirled, What am I
going to do? I can't write, so filling out an employment application is
impossible. How will I ever sit still through an interview? If I can't
fill out an app, does that mean I am disabled? So I turn to you the list
for help. Has this happened to any of you? Do you have any legal and moral
experience. I sit here at home not sure what to do. I have plenty of
confidence that my mind works just fine, but the PD has taken its toll, I
would appreciate any info, help, or suggestions.
>
> Thank You,
>
> Paul Ayers [log in to unmask]
>
>
>
>
>
> ---------------------------------
> Do You Yahoo!?
> Make international calls for as low as $.04/minute with Yahoo! Messenger
> http://phonecard.yahoo.com/
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 16:01:44 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Sid Levin <[log in to unmask]>
Subject: Is the TorontoU PIEN server infected? I THINK SO!!!
Comments: cc: John Cottingham <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Last night, I sent in to the PIEN a notice that I had received three emails
with attachments and they probably had that "worm." All three were direct
quotes of STATEMENTS that I had put on your Toronto Server.
Follwing my usual procedure, I deleted them without opening the attachments
In todays mail, I received the latest TorontoU service postings and
immediately after, was another phony email.
It seems to me that this "instant" Kick-back could only have been done with a
worm in YOUR server. I firmly believe that your system is bugged.
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Wed, 25 Jul 2001 18:18:03 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: DBS Surgery
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Thank you Diane, and I am thanking you on list in case anyone else would like
the answer to this question. It is a comfort to know Medicare will pay for
DBS. Rayilyn
----------------------------------------------------------------------
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Date: Wed, 25 Jul 2001 19:43:06 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Linda J Herman <[log in to unmask]>
Subject: Nursing Home Wing for PWP
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Dear list members,
We hear about many problems that PWP often experience in nursing homes
and hospitals, but few solutions. About a week ago, Marge Moylan posted
an article she wrote about how The Central NY Parkinson's Support Group
tackled this problem in their community, but unfortunately it was right
in the middle
of the list's virus attack, and i suspect was missed by many.
I'm reposting Marge's article, with her permission for those who missed
it.
It is a great story about a great group of people.
Are there any other PD organizations that are addressing care issues,
like this one or in different ways? It would be helpful to hear about
what
is going on in other places.
Marge is the newsletter editor of the Central NY Parkinson's Support
Group.
She wrote:
"Some time ago, Nancy McCaffrey, my co-editor, posted a question
on the PIEN, asking if anyone knew of a nursing home facility anywhere in
the county with a separate wing for patients with Parkinson's. Her
search
didn't turn up anything like this, so we are assuming that we are one
of a kind and hopefully the first of many. The Presbyterian Homes of
Central New York are located in New Hartford, NY, which is near Utica. "
Marge's ARTICLE:
Parkinson Wing a Reality
By now many of you have heard about the great excitement for PWP
in our area. A special separate wing for patients who have Parkinson's
disease has opened at the Presbyterian Home in New Hartford.
As far as we know this is a national first, a wing in a skilled nursing
facility set up especially to treat PD patients.
Those of you who don't have much experience with Parkinson's may
wonder why PWP need a special unit. It's not that they are unfriendly.
It's just that their care, to be of the best quality, needs to be
different from that
of the general nursing home population.
Medication is one of the most important considerations. Not only do we
not
fit into the nursing home's regimen, we are all different from one
another.
Each patient's meds are tailored to his own needs, but the one thing we
have
in common is we need our pills ON TIME. Without them, we tend to become
frozen, unable to move. There is no point in trying to make a PWP get up
and
exercise when he is off, in other words his medicine is not working. It
is frustrating for the patient and could be dangerous. He can't move
easily
and his balance is impaired. By waiting until he is on, meds working, he
will be able to enjoy his exercise, with less chance of getting hurt.
There are dietary restrictions for some PWP in that they cannot have a
meal
heavy in protein before their medicine. The protein will prevent the
medicine from getting to the brain where it is needed. Then there is the
fact that PWPs frequently don't sleep well at night. Putting them to bed
at
the usual early nursing home hour won't work
.
While a certain percentage of Parkinson's people suffer from dementia,
they
are in a minority. Most are fully aware and able to take part in their
own
care. Another reason for our joy over this project is the home has just
opened a brand new rehab facility, complete with pool, which is furnished
particularly with equipment to meet the needs of PD. The really good
news is
that this will be open to outpatients with Parkinson's as well as
residents.
We of the Central NY Parkinson's Support Group are proud to have been
asked
to be a part of this. Six of us have served on the steering committee:
Evelyn Petrie, Mary Wrege, Ed and Nancy McCaffrey, and Pat and Marge
Moylan.
Seymour Petrie, Evelyn's husband, Mary's father, spent the last years of
his
life at the Presbyterian Home and was to have been the first resident on
the
designated PD wing. Unfortunately Seymour passed away last fall, but I
think he would be pleased at what we have accomplished.
The M & M Show (McCaffreys and Moylans) did a series of in-service
training
sessions on PD for the staff at the home. The Parkinson wing accepted
its
first patient on June 11. Since the good publicity on the new wing,
thanks
to WUTR, WKTV, and Bill Farrell at the Observer-Dispatch, the home has
been
kept very busy with calls from interested folks.
The enthusiasm of Tony Joseph, director of the Presbyterian Home, is
contagious and has certainly been the catalyst for this project. It has
been
a pleasure working with him and the other members of his staff.
Nobody really wants to go into a nursing home, but if it becomes
inevitable
and you have PD, the Presbyterian Home is the place I'd want to be.
Marge Moylan
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 17:42:43 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Tomorrow! on Travels With Parkinson's
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Hi All,
A little "heads up" came my way... I'd like to invite
y'all to listen to Chy and his guests...
Read on....
* * *
Travels With Parkinson's ~ Talk-radio With a Purpose
Who's On the Show This Week?
BROADCAST WEEK 50: ENDING 2001/07/28
Show 50a
Thursday 26th July 2001
from 9:00 am to 10:00 am EDT
Live!
Broadcast
from CHILLI-cothe ILLI-nois
from the home of
Joan E. Blessington Snyder
recipient
of the
Sidney Dorros Memorial Award
Listen to the broadcast on
VoiceAmerica
Phone in to talk to Chy and his guests
Joan Snyder, Donna Dorros and Peggy Willocks, toll-free on
1-888-355-5204
Add your voice to the show!
Show 50b
Thursday 26th July 2001
from 9:00 pm to 10:00 pm EDT
Taped!
as originally broadcast this morning!
from CHILLI-cothe ILLI-nois
from the home of
Joan E. Blessington Snyder
recipient
of the
Sidney Dorros Memorial Award
Listen to the re-broadcast on
VoiceAmerica
Sorry no call-ins!
http://www.geocities.com/chycasavant/
* * *
[log in to unmask]
----------------------------------------------------------------------
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=========================================================================
Date: Thu, 26 Jul 2001 03:09:33 +0200
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: STN DBS, a question
Comments: cc: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi David,
>> has anyone on this list had a STN DBS after having a bilateral
Pallidotomy Or does someone know of a person who has? If So, What were the
rersults? Were they positive? <<
First a note: I have NOT had this procedure myself.
There have been studies of DBS of the STN, and there is about 5 years (in
Europe) of experience with larger groups of patients with DBS of the STN.
There have been NO studies with patients having a DBS of the STN after a
(bilateral) pallidotomy, but there have been a few individual cases in which
DBS of the STN was performed after a pallidotomy some years before. The
results IN THESE FEW EXPERIMENTAL INDIVIDUAL CASES seem to indicate that a
DBS of the STN, after a previous pallidotomy, has in general the same
benifits, BUT NOT QUITE AS EFFECTIVE as a DBS of the STN would have been
without a previous pallidotomy.
The outcome of DBS of the STN after a pallidotomy is still highly
impredictable, and should IMO for the moment only be considered after a VERY
CAREFUL evaluation of the patient by a VERY EXPERIENCED (in DBS of the STN)
neurologist and neurosurgeon.
Hans.
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 21:25:11 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Don &/or Karen Berns <[log in to unmask]>
Subject: Don Berns 7 1/2 Year Pallidotomy (3rd try)
Mime-Version: 1.0
Content-Type: multipart/alternative;
boundary="=====================_8938537==_.ALT"
--=====================_8938537==_.ALT
Content-Type: text/plain; charset="us-ascii"; format=flowed
7 1/2 YEAR POST-Pallidotomy REPORT
(Surgery date 12/1/93)
By Dr. Don Berns
United Parkinson's Disease Rating Scale (UPDRS)
On
Off
Prior to
Surgery 12/1/93 -46 -51
Six Years Post-surgery 12/1/99 -4 -12
Seven and one half Years Post-surgery -2 -12
How can I say thanks for the radical transformation that took
place in my life 7 1/2 years ago. When I reflect on all that I have been
able to do as the result of this operation I am overwhelmed and oh, so
grateful.
For those of you who are not familiar with my story. Let me say that I had
a adrenal graft implant at Vanderbilt in 1987 with minimal benefits. On
December 1, 1993 I had a simultaneous bi-lateral pallidotomy. This life
changing operation was performed by Dr. Bob Iacono after others had told me
I would not be a good candidate since my brain was already compromised by
the surgery at Vanderbilt.
As has been my commitment to the larger Parkinson's community I have posted
updates on my condition every year since surgery. My last update was a 6
year post pallidotomy report. As I head into my eighth year post-surgery I
continue to benefit greatly from the pallidotomy
COLUMN CODES
-1 - SYMPTOM BEFORE SURGERY
0 - 6 mos. AFTER SURGERY
1 - 1 YR. POST-OPT
2 - 2 YR. POST-OPT
3 - 3 YR. POST-OPT
4 - 4 YR. POST-OPT
5 - 5 YR. POST-OPT
6 - 6 YR. POST-OPT
71/2-7.5 YR. POST-OPT
BEFORE SURGERY & YEARS POST SURGERY
SYMPTOMS -1 0 1 2
3
remor Severe Gone Gone Gone
Gone
yskinesia Severe Gone Gone Gone
Gone
weating A
Lot Gone Gone Gone Gone
Sleep
Disturbed Severe Gone Gone Gone
Gone
yelids
Open-Sleep Yes Closed Closed Closed
Closed
huffle Yes Gone Gone
Gone Gone
GaitFreeze Yes Gone Gone Gone
Gone
enseSmell Gone Better Better
Better Better
MuscleAche Yes Gone Gone Gone
Gone
ackProblm Yes Gone Gone Gone
Gone
yskinesia Yes Gone Gone Gone
Gone
radykinesia Yes Gone Gone Gone
Gone
exPerfmce Poor Great Great Great
Great
tress Affect NoEfct NoEfct
NoEfct NoEfct
Drooling Rare Slight Slight
Slight Slight
Urgency
Urinate Yes No No
Slight Slight
Dystonia None None None
None None
Shortness
Of
Breath Yes None None None
None
oice Weak Better Better
Varies Varies
Speech Affect Better Better
Better Better
Handwritng Bad Normal Normal
Normal Normal
On-Off Yes Gone Gone
Gone Gone
Appetite Poor Normal Normal
Normal Normal
Weight Loss Gain Normal
Normal Normal
Sense of
Well
Being Poor Exclnt Exclnt Exclnt
Exclnt
----------------------------------------------------------------------
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=========================================================================
Date: Wed, 25 Jul 2001 21:34:29 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Eugene Gascay <[log in to unmask]>
Subject: Re: stopping meds abruptly
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Carmilla- The original message that you sent to Norma contained the refer=
ence to PD+ syndromes. Since I am new to this guessing game, could you t=
ell me what these syndromes are? Thanks for explaining what may be the o=
bvious. Gene. =20
=20
----- Original Message -----
From: Camilla Flintermann
Sent: Saturday, July 21, 2001 8:12 AM
To: [log in to unmask]
Subject: Re: stopping meds abruptly
=20
Dear Norma---I assume you are aware that PD meds do not "work" for patien=
ts
who have one of the PD+ syndromes. Has he been evaluated for that ? Has
he seen a Movement Disorders Specialist (MDS)neuro? Your signature does
not show Gordie's age or age at time of diagnosis, BTW, and those are ve=
ry
helpful in knowing how to respond to questions/problems.
Just a thought----
>We stopped because they were making him stoned. He slept all of the time
>and was
>receiving NO benefits from the meds at all. At present he is not on any
>medication for PD. Nothing worked so I didn't think he needed to be on t=
hem
>since they had side effects which affected Gordie's quality of life. We =
are
>trying Rob's supplement program right now.
>
>Norma
Camilla Flintermann, former CG for Peter 83/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
and also at http://members.tripod.lycos.nl/genugten/flinterm=
.htm
"Ask me about the CARE list for Caregivers of Parkinsonian=
s ! "
And visit the CARE webring at http://www.pdcaregiver.org
----------------------------------------------------------------------
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.ca
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=========================================================================
Date: Wed, 25 Jul 2001 21:37:25 -0700
Reply-To: Martha Terry <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Martha Terry <[log in to unmask]>
Subject: Re: Is the TorontoU PIEN server infected? I THINK SO!!!
MIME-version: 1.0
Content-Type: text/plain; charset=iso-8859-1
Content-Transfer-Encoding: 7BIT
On Sunday, July 22, Norton Anti-Virus picked up the virus in two posts, both
with the same title., and both had been posted on July 21. They were
quarantined and deleted, but I have no idea how much damage, if any, they
did. I notified everyone that I exchange e-mail with regularly and so far
nobody has reported any problems.
I also notified the authors of the two posts, as a friendly
"heads-up," and one of them chose to take it as an accusation. It was by no
means meant that way. I have only posted here once before, in June, so I
doubt that the target is regular posters ~~ however, I am a regular reader!
----------------------------------------------------------------------
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=========================================================================
Date: Thu, 26 Jul 2001 07:40:43 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: John Cottingham
<[log in to unmask]>
Subject: Re: Is the TorontoU PIEN server infected? I THINK SO!!!
Comments: To: [log in to unmask]
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Martha, it is a world wide epidemic. The SirCam virus is infecting computers world wide and replys to messages kept on users in boxes. Someone evidently liked you post and kept it in their in box. That is why you got a couple. Several of the Parkinsn subscribers have had their machines infected but the listserv is not infected.
Viruses are sent outside of the listserv by regular email. I am getting the virus attacks from the spam mailers in other countries which is the kiss of death for them because they want you to buy something and their message contains a virus.
You have done quite well by using Norton Anti-Virus to protect your email.
As of yet, the list administration at the University of Toronto has seen no evidence that the SirCam threat has propagated from the list.
Until this present virus has run it's course,
1. I would suggest that folks empty their in boxes of their email program. This is where the virus gets the addresses to reply to.
2. If one doesn't have an anti-virus program get one or use the free one at:
http://www.antivirus.com/free_tools/
3. If you are paranoid, you can set your Parkinsn mail to no mail.
You can set your Parkinsn mail options at:
http://parkinsons-information-exchange-network-online.com/mailopt.html
Click on the button Suspend My Parkinsn Mail. This creates the proper command in your email program to suspend your Parkinsn mail. Send the message.
The Parkinsn List mail is viewable and updated every 4 minutes at:
http://parkinsons-information-exchange-network-online.com/parkmail.html
By suspending your Parkinsn mail you eliminate the risk of getting a virus from the Listserv but you do not reduce the risk of someone's computer getting infected and then sending you the virus.
SirCam is on the same order as the 'Love Bug' virus and is propagating daily. Companies that store sensitive information in their In box are finding their company or personal secrets being used as a vehicle to spread the virus.
Our users generally have handled this threat very well with only a few being infected. I guage this thought on the fact that very few of my posts have come back as virus threats. Junk mail seems to be the area where most of the threat is coming from now.
As for the thread, "Is the TorontoU PIEN server infected? I THINK SO!!!", isn't an appropriate topic of discussion here because these type of concerns should be directed to the list management at:
[log in to unmask]
John Cottingham
co-owner Parkinsn
----------------------------------------------------------------------
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=========================================================================
Date: Thu, 26 Jul 2001 07:49:57 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Travels_With_Parkinsons Talk-radio_With_A_Purpose
<[log in to unmask]>
Subject: Travels With Parkinsons (Snyder/Dorros) to be rescheduled
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
We regret that due to a technical error beyond our
control, we were unable to broadcast as scheduled this
morning. We will re-post the re-scheduled broadcast
time as soon as it is available.
Travels With Parkinsons
Talk-radio With a Purpose
http://www.geocities.com/chycasavant/
__________________________________________________
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----------------------------------------------------------------------
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=========================================================================
Date: Thu, 26 Jul 2001 10:47:29 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: stopping meds abruptly
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Gene-- there is lots of material in the archives re: PD+ syndromes, and I
suggest that in addition to what I fwd to you from my files you check that
out also. Take care--
>Carmilla- The original message that you sent to Norma contained the
>reference to PD+ syndromes. Since I am new to this guessing game, could
>you tell me what these syndromes are? Thanks for explaining what may be
>the obvious. Gene.
Camilla Flintermann, former CG for Peter 83/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
and also at http://members.tripod.lycos.nl/genugten/flinterm.htm
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at http://www.pdcaregiver.org
----------------------------------------------------------------------
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=========================================================================
Date: Thu, 26 Jul 2001 10:05:57 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Paul Ayers <[log in to unmask]>
Subject: Legal
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Does anyone know of a disability attorney in the Indianapolis, IN area?
---------------------------------
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Date: Thu, 26 Jul 2001 13:32:57 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Travels_With_Parkinsons Talk-radio_With_A_Purpose
<[log in to unmask]>
Subject: Friday at 10:00 am! Snyder/Dorros Rescheduled TWP
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Travels With Parkinson's
Talk-radio With a Purpose
-----------------------------------------------------------------------
Who's On the Show This Week?
BROADCAST WEEK 50: ENDING
2001/07/28
Show 50a
Re-scheduled!
Friday 27th July 2001
from 10:00 am to 11:00 am EDT
Live!
Broadcast
from CHILLI-cothe ILLI-nois
from the home of
Joan E. Blessington Snyder
recipient
of the
Sidney Dorros Memorial Award
Listen to the broadcast on
VoiceAmerica
Phone in to talk to Chy and his
guests
Joan Snyder, Donna Dorros and Peggy
Willocks, toll-free on
1-888-335-5204
Add your voice to the show!
Show 50b
Re-scheduled!
Friday 27th July 2001
from 10:00 pm to 11:00 pm EDT
Taped!
as originally broadcast this
morning!
from CHILLI-cothe ILLI-nois
from the home of
Joan E. Blessington Snyder
recipient
of the
Sidney Dorros Memorial Award
Listen to the re-broadcast on
VoiceAmerica
Sorry no call-ins!
-----------------------------------------------------------------------
http://www.geocities.com/chycasavant/
__________________________________________________
Do You Yahoo!?
Make international calls for as low as $.04/minute with Yahoo! Messenger
http://phonecard.yahoo.com/
----------------------------------------------------------------------
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=========================================================================
Date: Thu, 26 Jul 2001 17:54:04 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Perry Cohen <[log in to unmask]>
Subject: AMGEN/GUILDFORD PHASE II RESULTS
Mime-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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http://www.guilfordpharm.com/fs_whatsnew_nf.htm
Guilford Pharmaceuticals Inc. (ticker: GLFD, exchange: NASDAQ) News Release - 7/26/2001
--------------------------------------------------------------------------------
Guilford Pharmaceuticals Announces Completion Of NIL-A Phase II Clinical Trial for Parkinson's Disease
BALTIMORE, July 26 /PRNewswire/ -- Guilford Pharmaceuticals Inc. (Nasdaq: GLFD) announced today that Amgen Inc. has completed a Phase II clinical trial of NIL-A, the neuroimmunophilin ligand licensed to it by Guilford Pharmaceuticals, in patients with Parkinson's disease. This trial is the first clinical evaluation of a neuroimmunophilin ligand in the treatment of Parkinson's disease.
About the NIL-A Phase II Clinical Trial
The clinical trial conducted by Amgen is a Phase II, randomized, double- blind, placebo- controlled evaluation of the safety, pharmacokinetics and efficacy of NIL-A in patients with mild to moderate Parkinson's disease.
Phase II clinical trials of a drug are usually conducted to extend the safety evaluation conducted in Phase I, to determine a dosing regimen for future clinical trials, and to explore the potential efficacy of the drug in a targeted patient population. The efficacy evaluation centers on determining the clinical benefit of treatment, if any, and whether or not all patients or a subgroup appear to benefit. Phase II trials are usually exploratory or hypothesis generating. Confirmatory evidence, gathered in Phase III trials, is almost always needed before final conclusions can be drawn about the safety and efficacy of a new drug.
At the 42 participating medical centers in the NIL-A Phase II trial, patients were screened to determine their eligibility for the study and informed consent was obtained from each patient who was offered and accepted enrollment. Patients then received a thorough examination, including a neurological exam, to determine the extent and severity of their disease and all drugs then being administered were recorded. To be eligible, patients had to be optimally treated with antiparkinsonian drugs and have stable clinical symptoms. Upon completing the baseline evaluation, patients were randomly assigned to receive either placebo tablets, 200 mg of NIL-A, or 1,000 mg of NIL-A four times a day for 24 weeks. The randomization scheme was blocked by imaging status (see below) but not by treatment center.
Subsequently, all patients were periodically evaluated by neurologists expert in Parkinson's disease to determine if they had experienced any side effects from treatment, to measure their blood levels of NIL-A, and to determine if they had experienced any change in their symptoms of Parkinson's disease.
SPECT brain scans were obtained with 123I Beta-CIT (DOPASCAN(R) Injection) in a subset of the patients to obtain a measure of the density of dopamine nerve terminals in the region of the brain that deteriorates in Parkinson's disease.
After six months of treatment, final clinical examinations and SPECT scans were obtained and treatment was discontinued. Patients were followed for 28 days after treatment and then exited from the trial.
There were 300 patients enrolled in the trial, 101 were assigned to the placebo group, 100 to the low dose group, and 99 to the high dose group. SPECT scans were obtained in 105 subjects equally divided among the treatment groups.
The two primary clinical hypotheses tested in this trial were that 6 months of treatment with NIL-A would result in at least a 4 point improvement when compared with placebo in the UPDRS Motor Subscale measured before patients took their first daily dose of antiparkinsonian medication, and that NIL-A would be safe and well tolerated at doses up to 1000 mg four times a day for 6 months. The a priori efficacy hypothesis was established based on expert advice and prior experience with the development of other classes of antiparkinsonian drugs, although there was no prior clinical experience with NIL-A to generate the primary efficacy hypothesis. Secondary efficacy endpoints identified in the analytical plan for the trial were: 123I Beta CIT SPECT scans, total UPDRS score, bilateral finger tapping, dyskinesia rating scale, Hoehn & Yahr rating scale and a quality of life measure obtained from a questionnaire.
The frequency and severity of reported adverse events were similar in all three treatment groups except that patients in the high dose NIL-A group experienced an increased incidence of transient nausea or indigestion. The mean change in UPDRS motor score was -1.05 in placebo treated patients and 0.25 and -0.35 in the low dose and high dose patients respectively. (p=0.2) An increase in score indicates worsening disease. The mean percent change in the density of dopamine nerve terminals as measured by SPECT was +3.4% in placebo patients, +6.3% in low dose patients and +9.4% in the high dose group after 12 weeks of treatment. (n=30, 10 per group, p=0.4) the corresponding changes at 24 weeks were -0.15%, -1.2% and +2.5%. (n=105, 35 per group, p=0.7). The Hoehn & Yahr score improved (i.e., went down) during the trial in 11% of placebo patients, 17% of low dose patients, and 21% of the high dose patients. The difference between the high dose group and the placebo group was significa!
nt after adjustment for age, dur
ation of Parkinson's disease symptoms, and Hoehn & Yahr score at baseline (p=0.028). The changes in the dyskinesia scores and finger tapping tests were not statistically significant.
Subgroups of patients stratified by age, disease severity, duration of symptoms, and type of antiparkinson's treatment are currently being analyzed.
These results suggest that NIL-A at doses up to 1000 mg taken orally four times a day for 6 months is well-tolerated but does not produce a substantial reversal of the motor symptoms of Parkinson's disease.
About Parkinson's Disease
Parkinson's disease is a chronic, progressive degenerative disorder that involves a specialized region of the brain that controls muscle tone and coordination. Most patients are affected in mid-life and usually develop hand tremors, muscle rigidity, and postural instability, among the many manifestations of the disease. The disease is caused by the degeneration of nerve cells that use dopamine as a chemical messenger. Treatment currently consists of administering drugs that increase the amount of dopamine in the affected regions of the brain or substitute for the lost dopamine. Unfortunately, there are no current treatments that can reverse, or even slow down, the progressive degeneration of the dopamine nerve cells in Parkinson's disease.
About Neuroimmunophilin Ligands
Neuroimmunophilin ligands are small molecules that in preclinical experiments have been shown to be orally-bioavailable, cross the blood-brain barrier, and repair and regenerate damaged nerves without affecting normal nerves. In 1997, Guilford entered into a collaboration with Amgen for the research, development and commercialization of a broad class of neuroimmunophilin ligands, for a range of indications, including Parkinson's disease, Alzheimer's disease, spinal cord injury, brain trauma, and other diseases and conditions. Amgen commenced the current Phase II trial for NIL-A for Parkinson's disease in the summer of 2000.
Guilford Pharmaceuticals is a biopharmaceutical company engaged in the development of polymer-based therapeutics for cancer, and novel products for the diagnosis and treatment of neurological diseases, including Parkinson's disease, Alzheimer's disease, stroke, severe head trauma, spinal cord injuries, multiple sclerosis and peripheral neuropathies.
Internet address: www.guilfordpharm.com
This press release contains forward-looking statements that involve risks and uncertainties, including those described in the section entitled "Risk Factors" contained in the Company's Registration Statement on Form S-3 dated June 21, 2001, that could cause the Company's actual results and experience to differ materially from anticipated results and expectations expressed in these forward-looking statements. Among other things, there can be no assurance that NIL-A will be shown in clinical trials to be a safe and effective drug for the treatment of Parkinson's disease or other conditions.
SOURCE Guilford Pharmaceuticals Inc.
CONTACT: Stacey Jurchison, +1-410-631-5022, or Angie Rubin, +1-410-631-6449, both of Guilford Pharmaceuticals/
----------------------------------------------------------------------
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Date: Thu, 26 Jul 2001 17:12:49 -0500
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: samantha pudge <[log in to unmask]>
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Subject: Re: PD+ syndromes
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camilla,
this is new to me also and was looking forward to a list response.
sami
--
On Thu, 26 Jul 2001 10:47:29 Camilla Flintermann wrote:
>Gene-- there is lots of material in the archives re: PD+ syndromes, and I
>suggest that in addition to what I fwd to you from my files you check that
>out also. Take care--
>
>
>>Carmilla- The original message that you sent to Norma contained the
>>reference to PD+ syndromes. Since I am new to this guessing game, could
>>you tell me what these syndromes are? Thanks for explaining what may be
>>the obvious. Gene.
>
>Camilla Flintermann, former CG for Peter 83/70/55
> Oxford, Ohio
> <[log in to unmask]>
>
> on the web at http://www.geocities.com/camillahf/index.html
> and also at http://members.tripod.lycos.nl/genugten/flinterm.htm
>
> "Ask me about the CARE list for Caregivers of Parkinsonians ! "
> And visit the CARE webring at http://www.pdcaregiver.org
>
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Date: Thu, 26 Jul 2001 22:29:21 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Linda J Herman <[log in to unmask]>
Subject: Fw: ACTION ALERT from PAN
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--------- Forwarded message ----------
From: "Laura Eckart" <[log in to unmask]>
Date: Thu, 26 Jul 2001 16:10:11 -0400
Subject: 145 members!
ACTION ALERT! WE NEED YOUR HELP!
ALERT:A letter is being circulated in the House of Representatives by
Representative Diana DeGette, D-CO and Representative Jim Ramstad, R-MN
to President Bush in support of embryonic stem cell research.
ACTION: If your Member of Congress has not signed this letter, please
call and urge them to do so. Ask your Representative to sign onto the
DeGette/Ramstad stem cell letter to the President. This letter is
scheduled to be sent to the White House on Friday, July 27th. So, time is
of the essence! If you are unsure of your representative's phone number
please call 202-225-3121 or visit www.house.gov.
ATTACHMENT: Below is a copy of the letter that will be sent to President
Bush as well as Members of Congress who have already signed onto the
letter. If your Member of Congress has already signed the letter, call
and thank them for their support.
Please send this to your family and friends and ask for there assistance.
Together, we can make a difference!
----------------------------------------------------------------
President George W. Bush
The White House
1600 Pennsylvania Avenue
Washington, DC 20500
We are writing to express our strong support for federal funding of
embryonic stem cell research. The surprising news reports last week on
private embryonic stem cell research underscore the importance of
continued federal oversight and involvement in this sensitive and
important area.
The reports last week that a Virginia laboratory has created human
embryos to obtain stem cells for research purposes and a Massachusetts
firm aims to create embryos using cloning techniques to derive stem cells
for therapeutic purposes, make plain that this research, replete with
moral, ethical, and scientific issues is occurring in the private sector
even as the federal government debates the issues.
The only way to ensure that embryonic stem cell research is conducted
with strict ethical and legal guidelines is to provide federal funding
and oversight. By taking this leading role, the federal government will
participate in the vital debate that occurs concerning any new
biotechnology, including the creation of human embryos for research
purposes. We believe that these issues should not be left to the private
sector to dictate alone.
The National Institutes of Health (NIH) guidelines provide meaningful
oversight protections by addressing such issues as informed consent, the
source of cells and measures to ensure safety and the ethical use of
embryonic stem cells.
We understand that you are exploring various so-called compromises,
including allowing federal funds for research only on existing cell
lines. While we understand how that might appear to be an appealing
alternative, scientists report have produced very few cell lines at this
time. If this decision were made it would prove problematic because each
cell line has a different potential for offering different therapies.
Scientists have yet to discover and understand the full range of
available cell lines, let alone their prospective medical benefits.
Halting research before fully understanding these issues will thwart
further development.
Mr. President, you have read and heard from the scientists that research
on embryonic stem cells could result in treatments or cures for millions
of Americans suffering a variety of illnesses including diabetes,
Parkinson's disease, Alzheimer's, and heart disease. We urge you to take
our views into consideration when you make this incredibly important
decision. You have the lives of millions of our-and your-constituents in
your hands.
Signed,
Below is the most recent list of members who have signed the
DeGette/Ramstad letter to President Bush. Keep Up the good work. The
letter will be mailed to President Bush on Monday, July 30th.
Alphabetical List of Members Who Have Signed Stem Cell Letter as of July
26th
1) Neil Abercrombie
2) Gary L. Ackerman
3) Thomas H. Allen
4) Robert E. Andrews
5) Joe Baca
6) John E. Baldacci
7) Tammy Baldwin
8) Tom Barrett
9) Charles Bass
10) Howard Berman
11) Shelly Berkley
12) Judy Biggert
13) Sanford Bishop
14) Sherwood Boehlert
15) Daniel E. Bonior
16) Mary Bono
17) Rick Boucher
18) Robert A. Brady
19) Corrine Brown
20) Sherrod Brown
21) Lois Capps
22) Brad R Carson
23) Julia Carson
24) Michael N. Castle
25) William Lacy Clay
26) James Clyburn
27) Elijah E. Cummings
28) Randy "Duke" Cunningham
29) Danny Davis
30) Jim Davis
31) Susan A. Davis
32) Tom Davis
33) Peter A. DeFazio
34) Rosa DeLauro
35) Peter Deutsch
36) Lloyd Doggett
37) Calvin Dooley
38) John Duncan
39) Jennifer Dunn
40) Philip English
41) Anna Eshoo
42) Lane Evans
43) Sam Farr
44) Bob Filner
45) Mark Foley
46) Rodney Frelinghuysen
47) Martin Frost
48) James Gibbons
49) Wayne Gilchrest
50) Benjamin A. Gilman
51) Kay Granger
52) Jim Greenwood
53) Luis Gutierrez
54) Jane Harman
55) Alcee L. Hastings
56) Maurice Hinchey
57) Rush Holt
58) Joseph Hoeffel
59) Mike Honda
60) Darlene Hooley
61) Steve Horn
62) Amory Houghton, Jr.
63) Jay Inslee
64) Johnny Isakson
65) Sheila Jackson Lee
66) Eddie Bernice Johnson
67) Nancy Johnson
68) Gerald D. Kelczka
69) Sue Kelly
70) Carolyn Kilpatrick
71) Ron Kind
72) Mark S. Kirk
73) Jim Koulbe
74) Jim Langevin
75) Tom Lantos
76) Rick Larsen
77) Jim Leach
78) Barbara Lee
79) Sander M. Levin
80) Jerry Lewis
81) John Lewis
82) Zoe Lofgren
83) Nita Lowey
84) William Luther
85) Carolyn B. Maloney
86) James H. Maloney
87) Edward Markey
88) Robert Matsui
89) Carolyn McCarthy
90) Karen McCarthy
91) Jim McDermott
92) Martin Meehan
93) Carrie P. Meek
94) Robert Menendez
95) Juanita Millender-McDonald
96) Dan Miller
97) George Miller
98) Dennis Moore
99) Jim Moran
100) Connie Morrella
101) Jerrold Nadler
102) Grace Napolitano
103) George R. Nethercutt
104) John W. Olver
105) Frank Pallone
106) William J. Pascrell
107) Nancy Pelosi
108) Earl Pomeroy
109) David Price
110) Deborah Pryce
111) Jim Ramstad
112) Charles Rangel
113) Lynn N. Rivers
114) Ciro D. Rodriguez
115) Mike Ross
116) Steven R. Rothman
117) Marge Roukema
118) Lucille Roybald-Allard
119) Bobby Rush
120) Martin Olav Sabo
121) Loretta Sanchez
122) Max A. Sandlin
123) Thomas C. Sawyer
124) Janice D. Schakowsky
125) Bobby Scott
126) E. Clay Shaw
127) Christopher Shays
128) Robert R. Simmons
129) Louise Slaughter
130) Ted Strickland
131) Hilda Solis
132) John Spratt
133) Pete Stark
134) Ted Strickland
135) Ellen O. Tauscher
136) William M. Thomas
137) John F. Tierney
138) Edolphus Towns
139) Stephanie Tubb Jones
140) Mark Udall
141) Nydia Velazquez
142) Diane Watson
143) Melvin Watt
144) Henry A. Waxman
145) David Wu
----------------------------------------------------------------------
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=========================================================================
Date: Fri, 27 Jul 2001 00:29:02 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Noma DePew <[log in to unmask]>
Subject: Stem Cell Research
Comments: To: [log in to unmask]
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Both NIH and Conservative Senator Back Embryonic Studies By=A0 <A HREF=
=3D"http://my.webmd.com/content/article/1756.50704">Sean=A0Martin </A> =20
=20
WebMD Medical News =20
July 18, 2001 (Washington) -- As Congress continued hearings on stem cell=20
research, advocates of controversial studies using cells taken from human=20
embryos gained the support of both a National Institutes of Health report an=
d=20
a prominent conservative Republican on Wednesday.=20
Later this month, President Bush is supposed to announce his decision on=20
federal funding for studies of embryonic stem cells. The Clinton=20
administration had given the research the green light, but Bush has suspende=
d=20
that decision for a full review of the cutting-edge issue.=20
The NIH report released Wednesday emphasized the merit of embryonic and less=
=20
contentious adult stem cell research. "Both of these cell types hold enormou=
s=20
promise," the report stated. Using both cell types, scientists have been abl=
e=20
to repair or replace damaged cells and tissues in animal studies, according=20
to the report.=20
Stem cells are "blank" cells that have the power to transform themselves int=
o=20
virtually any type of cell in the body. Scientists are hoping to harness thi=
s=20
ability to battle a host of serious human diseases.=20
"It is impossible to predict which stem cells ... will best meet the needs o=
f=20
basic research and clinical applications," the NIH report said. "The answers=
=20
clearly lie in conducting more research."=20
Meanwhile, Sen. Bill Frist (R-Tenn.) testified at a Senate hearing that he=20
supported embryonic research under strict ethical guidelines. Frist, a heart=
=20
surgeon and the Senate's only doctor, said, "research using the more=20
versatile embryonic stem cells has greater potential than research limited t=
o=20
adult stem cells."=20
Frist joins a growing list of conservatives, including Sen. Orrin Hatch=20
(R-Utah) and Nancy Reagan, who back federal funding.=20
According to the NIH, there are already about 30 embryonic stem cell "lines,=
"=20
which means that research stem cells have come from about 30 different human=
=20
embryos.=20
Frist said that scientists should come together to decide on an upper limit=20
of cell lines that could receive federal funding. "You don't need unlimited=20
cell lines," he said. Frist also emphasized that taxpayer dollars should not=
=20
be spent for the actual extraction of stem cells from embryos, the act that=20
results in their destruction.=20
The early-stage human embryos in question are frozen and "left over" from in=
=20
vitro fertilization efforts. They would otherwise be discarded.=20
But the Catholic Church and many pro-life advocates are morally opposed to=20
any government involvement in embryonic stem cell research, contending that=20
the research requires destroying human life. Sen. Sam Brownback (R- Kan.)=20
said, "We simply do not need to do any research which relies on the=20
destruction of human beings."=20
By contrast, Sen. Gordon Smith (R-Ore.) said that he believes that life=20
begins in the mother's womb. But Catholic leaders insist that it commences=20
upon the union of the male sperm and female egg.=20
A House hearing Tuesday featured testimony that opposed funding for the=20
embryonic research from a couple who had adopted frozen embryos that=20
ultimately were born as twins.=20
Brownback and others opposed to the embryonic research say that adult stem=20
cells are the only ethically acceptable scientific avenue.=20
But the NIH report noted that adult stem cells are rare and that there is no=
=20
evidence that they can develop into any other type of cell like embryonic=20
stem cells can.=20
It's still uncertain how President Bush will decide on federal funding for=20
the embryonic research.=20
Bush, who plans to meet with the Pope in Rome later this month, said this=20
week that "the leaders of the Catholic Church ... stand strong on the=20
principle of life. They also stand strong on making sure that those who have=
=20
no voice are heard."=20
Earlier this year, Bush wrote to a conservative group that he opposed federa=
l=20
funding for "stem cell research that involves destroying living human=20
embryos."=20
Even if embryonic stem cell research flourishes under possible federal=20
funding, there's no guarantee of cures for cancer, Alzheimer's, Parkinson's,=
=20
or any other of a list of diseases.=20
The NIH report notes that finding a cure for type 1 diabetes may be difficul=
t=20
because the body's own immune system attacks and destroys its cells. "This=20
... must be overcome if researchers hope to use the transplanted cells to=20
replace the damaged ones," it says.=20
=A0=20
=20
=20
Medically Reviewed
By=A0<A HREF=3D"http://my.webmd.com/content/article/1756.53723">Dr. Dominiqu=
e=A0Walton</A>=20
=A9 2001 WebMD Corporation. All rights reserved.=20
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Date: Fri, 27 Jul 2001 05:14:27 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Kat Ward <[log in to unmask]>
Subject: Drug interactions
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Dear List,
My name is Kathryn Ward and my father has Parkinson's. He is 68 =
years old and was diagnosed in 1996. He was coping as well as to be =
expected given the added burden of macular degeneration and retinal =
detachment in one eye. He became a candidate for DBS and in April 2001 =
had one stimulator successfully implanted. During the past month he has =
been experiencing fairly severe "spells" of dizziness, nausea, extreme =
dry mouth, flushing of his upper body, confusion, lightheadness, muscle =
pain and weakness, abdominal pain, loss of appetite and weight loss and =
erratic blood pressure. These "events" had been occurring prior to the =
neurosurgery but they were not as severe as they have become in the past =
month. Every one in his medical community seems stumped by these =
symptoms ( which appear to read like the side effects of Sinemet ) and =
last month his neurologist told him that these symptoms were not =
symptoms of Parkinson's.
He has since been to the cardiologist and been tested ( Negative on =
all counts-- the cardiologist told him that he thought it WAS =
Parkinson's) and two weeks ago he was in the local ER for five hours =
because his BP was so high that my mother was fearful of an aneurysm and =
called 911. Again nothing was uncovered to account for these mysterious =
"spells" which came and went all day long, some being more severe than =
others but always knocking him down and keeping him from leaving the =
house. He has even had an abdominal CT which also was clear of =
abnormalities.
I live 300 miles away from my parents and tried to get my mother to =
really keep track of when the spells were happening and what he was =
doing, had eaten, timing of meds etc. but she is so overwhelmed that I =
wasn't able to get much help there. I have been to see my father twice =
in the last two weeks and have observed what is going on. I began to =
really question the combination of his meds. He is taking Sinemet, =
Hytrin and Valium. All three have almost the same side effects-- =
especially the Hytrin and Sinemet. My research is leading me to strongly =
suspect a negative synergistic effect caused by the combination of these =
three meds. The Hytrin was prescribed over a year ago by a urologist for =
enlarged prostate and the Sinemet and Valium were prescribed by the =
neurologist. My sister and I have both read that Valium can interfere =
with the action of Sinemet.
My father re-visited the neurologist two days ago ( and my sister =
went along with my parents to ask questions ) and the only thing the =
neurologist could offer at this point was that the symptoms are indeed =
Parkinson's moving into Stage 4. When questioned specifically about the =
possibility of a negative drug interaction he was noncomittant and =
suggested that my father see the neurosurgeon and get a second =
stimulator and told Dad to make his next appointment for a month from =
now. When asked why the Valium was prescribed for my father the =
neurologist said to help Dad "relax" and gave no indication that taking =
Valium and Sinemet at the same time was a problem in his mind. (Needless =
to say, we are not pleased with this treatment but right now our primary =
concern is Dad's condition.) I am hoping that someone on the List can =
shed some light on these mysterious symptoms...are they "just =
Parkinson's getting worse" or are they indeed indicative of a drug =
toxicity? I'm pretty sure from research and observation that the Sinemet =
alone isn't causing these symptoms. Is there anyone taking Hytrin and =
Sinemet or Valium and Sinemet or all three medications? Is anyone having =
similar kinds of "spells" as simply a part of Parkinson's? Has anyone =
else had a stimulator implanted and experienced these symptoms? ( I tend =
not to suspect the stimulator because immediately after the implant the =
tremors and arm/leg waving that Dad was experiencing stopped and he =
looked and felt really well, but I have to look at all the issues).
Any information or suggestions from the Parkinson's Community will be =
appreciated greatly.
Thank you
Kathryn Ward
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Date: Fri, 27 Jul 2001 06:24:48 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Linda J Herman <[log in to unmask]>
Subject: Disability discrimination suit
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To Sue Weiler and list members,
I'm glad to read that you won the suit against your former employer. Good
for you! Thanks also for sharing your experiences with the rest of us.
You wrote:
<< know, with a few adaptations (I can't write legibly either), I could
have
continued with my original job. I also believe I could have done the
jobs
that I applied for. It is very unfair to be treated this way. I got mad
and I got even. My hope is that my former employer will at least think
twice before trying the lousy tactics, with another disabled employee,
that
they used to get me to quit.>>
And now maybe others who are also being discriminated against will be
encouraged to take legal action, and more employees will think twice.
Maybe others who have lost jobs because will get ideas about other
options for them, such as applying to the Dept. of Vocational
Rehabilitation as you did. I don't think many of us were aware that they
could help like that. Thanks, Sue.
I think, at it's best, sharing information like this, and bringing about
positive change is what this discussion list is all about.
Best wishes for success with your new business, Sue.
Linda
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Date: Fri, 27 Jul 2001 06:51:26 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Linda J Herman <[log in to unmask]>
Subject: ADA and applying for jobs
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To Paul and other list members,
Here's some information and good web sites on the ADA and pre-employment
rights. It reflects what the law says, although what Paul and Sue and
many others experience in real life, is of course not the same.
A number of times in the past, the question of to tell or not to tell
about PD at a job interview was discussed on the list. I had a number of
interviews about 2-3 years ago, and chose not to tell. At the time, with
medication and with optimal timing of when the interview took place, my
symptoms were well hidden, and i didn't believe that at that stage, PD
would interfere with my ability to do the job, and I did find a job,
which I've been at for 2 years now, and told my co-workers about the PD
about a year ago. My symptoms are more noticable now, but i still don't
think they interfere with my job. And i think I have built up enough
support that when i do have to request accomodations, they will be
willing to do so. (I hope!)
Of course, if you are requesting job accomodations under ADA, when
applying for a job, you would have to tell about it from the start. And
then there is the big question of whether an employer would choose a
disabled applicant, especially one with a degenerative, non curable
disease like PD, over a non-disabled, equally qualified candidate. The
real world again.
It would be helpful to hear about others' experiences looking for jobs
with PD. Please post to list if you are able to write openly about it --
be aware though that your posting may be read by anyone on the Internet.
Linda
Here is what the ADA says:
FROM:
ADA questions and answers (Dept. of Justice - Office of Civil Rights)
http://www.usdoj.gov/crt/ada/qandaeng.htm
Below are the sections related to job applicants:
Q. What practices and activities are covered by the employment
nondiscrimination
requirements?
A. The ADA prohibits discrimination in all employment practices,
including job application procedures, hiring, firing, advancement,
compensation, training, and other terms, conditions, and privileges of
employment. It applies to recruitment, advertising, tenure, layoff,
leave, fringe benefits, and all other employment-related activities.
Q. Who is a "qualified individual with a disability?"
A. A qualified individual with a disability is a person who meets
legitimate skill, experience, education, or other requirements of an
employment position that s/he holds or seeks, and who can perform the
essential functions of the position with or without reasonable
accommodation.
Requiring the ability to perform "essential" functions assures that an
individual with a disability will not be considered unqualified simply
because of inability to perform marginal or incidental job functions. If
the individual is qualified to perform essential job functions except for
limitations caused by a disability, the employer must consider whether
the individual could perform these
functions with a reasonable accommodation. If a written job description
has been prepared in advance of advertising or interviewing applicants
for a job, this will be considered as evidence, although not conclusive
evidence, of the essential functions of the job.
Q. Does an employer have to give preference to a qualified applicant with
a disability over other applicants?
A. No. An employer is free to select the most qualified applicant
available and to make decisions based on reasons unrelated to a
disability. For example, suppose two persons apply for a job as a typist
and an essential function of the job is to type 75 words per minute
accurately. One applicant, an individual with a disability, who is
provided with a reasonable accommodation for a
typing test, types 50 words per minute; the other applicant who has no
disability accurately types 75 words per minute. The employer can hire
the applicant with the higher typing speed, if typing speed is needed for
successful performance of the job.
Q. What limitations does the ADA impose on medical examinations and
inquiries about disability?
A. An employer may not ask or require a job applicant to take a medical
examination before making a job offer. It cannot make any pre-employment
inquiry about a disability or the nature or severity of a disability. An
employer may, however, ask questions about the ability to perform
specific job functions and may, with certain limitations, ask an
individual with a disability to describe or demonstrate how s/he would
perform these functions.
An employer may condition a job offer on the satisfactory result of a
post-offer medical examination or medical inquiry if this is required of
all entering employees in the same job category.
A post-offer examination or inquiry does not have to be job-related and
consistent with business necessity.
However, if an individual is not hired because a post-offer medical
examination or inquiry reveals a disability, the reason(s) for not hiring
must be job-related and consistent with business necessity. The employer
also must show that no reasonable accommodation was available that would
enable
the individual to perform the essential job functions, or that
accommodation would impose an undue hardship. A post-offer medical
examination may disqualify an individual if the employer can demonstrate
that the individual would pose a "direct threat" in the workplace (i.e.,
a significant risk
of substantial harm to the health or safety of the individual or others)
that cannot be eliminated or reduced below the oedirect threatî level
through reasonable accommodation. Such a disqualification is job-related
and consistent with business necessity. A post-offer medical examination
may not disqualify an individual with a disability who is currently able
to perform essential job functions because of speculation that the
disability may cause a risk of future injury.
After a person starts work, a medical examination or inquiry of an
employee must be job-related and consistent with business necessity.
Employers may conduct employee medical examinations where there is
evidence of a job performance or safety problem, examinations required by
other Federal laws, examinations to determine current oefitnessî to
perform a particular job, and
voluntary examinations that are part of employee health programs.
Information from all medical examinations and inquiries must be kept
apart from general personnel files as a separate, confidential medical
record, available only under limited conditions.
Q. When can an employer ask an applicant to "self-identify" as having a
disability?
A. Federal contractors and subcontractors who are covered by the
affirmative action requirements of section 503 of the Rehabilitation Act
of 1973 may invite individuals with disabilities to identify themselves
on a job application form or by other pre-employment inquiry, to satisfy
the section
503 affirmative action requirements. Employers who request such
information must observe section 503 requirements regarding the manner in
which such information is requested and used, and the procedures for
maintaining such information as a separate, confidential record, apart
from regular personnel records.
Another good source for ADA information
http://janweb.icdi.wvu.edu:80/links/adalinks.htm
preemployment screening
http://janweb.icdi.wvu.edu/kinder/pages/pre_employment_screening.html
reasonable accomodation
http://janweb.icdi.wvu.edu/kinder/pages/reasonable_accommodation.html
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=========================================================================
Date: Fri, 27 Jul 2001 07:00:22 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Linda J Herman <[log in to unmask]>
Subject: Job Accomodations for PWP
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This is a great website for information on job accommodations and they
have a section specificallly on Parkinson's . FROM the
Job Accommodation Network,
U.S. DOL Office of Disability Employment Policy
Headquartered at: West Virginia University ,PO Box 6080,
Morgantown, WV 26506-6080
800-526-7234 in the US (Voice or TTY)
Internet: http://www.jan.wvu.edu
SEE:
http://www.jan.wvu.edu/media/PD.html
Accommodating People With Parkinson's Disease
This site presents possible job accommodations for PWP, not actual cases.
It is written from the perspective of the employer. What do you all
think about it?
Has anyone actually been allowed such accommodations at their job?
PREFACE
ACCOMMODATING PEOPLE WITH PARKINSON'S DISEASE
According to the National Parkinson's Foundation it is estimated
that there
are up to 1.5 million Americans affected by Parkinson's Disease
(PD),
more persons than those suffering from Multiple Sclerosis and
Muscular
Dystrophy combined. Although 15% of PD patients are diagnosed before
age 50, PD is generally considered a disease that targets older
adults.
Parkinson's disease affects one of every 100 persons over the age of
60.
Today, many people with PD are living and working with PD. As a
result,
employers are seeing an increase in individuals with PD among their
employees. This, coupled with the requirements of the Americans with
Disabilities Act (ADA), shows why knowing about workplace
accommodations for people with PD is important.
When considering accommodations for people with PD, the
accommodation process must be conducted on a case-by-case basis.
Symptoms caused by PD vary so when determining effective
accommodations the person’s individual abilities and limitations
should be
considered and problematic job tasks must be identified. Therefore,
the
person with PD should be involved in the accommodation process.
Not all people with PD will need accommodations to perform their
jobs
and many others may need only a few accommodations. For those who
need accommodation, the following pages provide basic information
about common limitations, symptoms, useful questions to consider,
and
accommodation possibilities. The following is only a sample of
possibilities to consider; numerous other solutions and
considerations
may exist.
Also included in this publication is a list of resources for
additional
information.
This publication was written by Linda C. Batiste, MS, and Beth A.
Loy, MS,
Human Factors Consultants with the Job Accommodation Network. If
further information is needed, please call JAN at 1-800-526-7234.
1/01
QUESTIONS TO CONSIDER WHEN DETERMINING
ACCOMMODATIONS
What symptoms or limitations is the individual with PD experiencing?
How do these symptoms or limitations affect the person and the
person’s
job performance?
What specific job tasks are problematic as a result of these
symptoms
and limitations?
What accommodations are available to reduce or eliminate these
problems? Are all possible resources being used to determine
possible
accommodations?
Has the employee with PD been consulted regarding possible
accommodations?
Once accommodations are in place, would it be useful to meet with
the
person with PD to evaluate the effectiveness of the accommodations
and
to determine whether additional accommodations are needed?
Do supervisory personnel and employees need training regarding
PD,
other disability areas, or the Americans with Disabilities Act?
ACCOMMODATION CONSIDERATIONS FOR PEOPLE WITH
PARKINSON'S DISEASE
(Note: People with PD will develop some of these
limitations/symptoms,
but seldom develop all of them. Limitations will vary among
individuals.
Also note that not all people who have PD will need accommodations
to
perform their jobs and many others may need only a few
accommodations.
The following is only a sample of the possibilities available.
Numerous
other accommodation solutions exist as well.)
Fine Motor:
Implement ergonomic workstation design
Provide arm supports
Provide alternative computer access and keyguard
Provide alternative telephone access
Provide writing and grip aids
Provide a page turner and a book holder
Provide a note taker
Gross Motor:
Reduce walking or provide a scooter or other mobility aid
Provide parking close to the work-site
Provide an accessible entrance
Install automatic door openers
Provide an accessible route of travel to other work areas used
by the
employee
Move workstation close to other work areas, office equipment,
and break
rooms
Fatigue/Weakness:
Reduce or eliminate physical exertion and workplace stress
Schedule periodic rest breaks away from the workstation
Allow a flexible work schedule and flexible use of leave time
Allow work from home
Make sure materials and equipment are within reach range
Speech:
Provide speech amplification, speech enhancement, or other
communication device
Use written communication, such as email or fax
Transfer to a position that does not require a lot of
communication
Allow periodic rest breaks
Medical Treatment Allowances:
Provide flexible schedules
Provide flexible leave
Allow a self-paced workload with flexible hours
Allow employee to work from home
Provide part-time work schedules
Depression and Anxiety:
Reduce distractions in work environment
Provide to-do lists and written instructions
Remind employee of important deadlines and meetings
Allow time off for counseling
Provide clear expectations of responsibilities and consequences
Provide sensitivity training to co-workers
Allow breaks to use stress management techniques
Develop strategies to deal with work problems before they arise
Allow telephone calls during work hours to doctors and others
for support
Provide information on counseling and employee assistance
programs
Cognitive Impairment:
Provide written job instructions when possible
Prioritize job assignments
Allow flexible work hours
Allow periodic rest breaks to reorient
Provide memory aids, such as schedulers or organizers
Minimize distractions
Allow a self-paced workload
Reduce job stress
Provide more structure
Activities of Daily Living:
Allow use of a personal attendant at work
Allow use of a service animal at work
Make sure the facility is accessible
Move workstation closer to the restroom
Allow longer breaks
Refer to appropriate community services
PRODUCTS
There may be products available to accommodate an employee with PD.
For
information on specific products and vendors contact JAN.
EXAMPLE ACCOMMODATIONS FOR PEOPLE WITH PARKINSON'S
DISEASE
A secretary with PD and hand tremors was having difficulty using a
keyboard,
writing, manipulating manuals, and filing. She was accommodated with
a
keyguard, typing aid, page turner, and open files.
A supervisor with PD was having difficulty managing fatigue. The
employer
provided a private rest area with a cot so the individual could take
breaks
throughout the day.
A file clerk was having difficulty meeting the physical demands of
the job,
including walking between work areas, standing at filing cabinets,
and carrying
files. The individual was accommodated with a power scooter with a
basket and
a stand/lean stool.
A technician with PD was having difficulty concentrating. The
employee's
supervisor provided written job instructions when possible and
allowed the
individual to have periodic rest breaks. In addition, she was moved
to a corner
cubical where distractions were minimized with strategically placed
baffles.
A customer service representative with PD was having difficulty
manipulating his mouse, writing, standing to greet people, and
communicating effectively. He was accommodated with a trackball, writing
aid, stool with lift cushion, and speech amplification.
A technical consultant was having difficulty using the computer in
the afternoons due to fatigue. He was accommodated with speech
recognition and an
ergonomic workstation.
An office assistant with tremors and fatigue was having difficulty
typing the
number of words per minute required by her employer. The individual
rearranged her workstation to reduce distractions and her employer
offered
flexible scheduling. Her word processing software was programmed
with
macros to reduce keystrokes and she was given speech recognition
software.
A consultant with PD was having difficulty getting to work on time.
He was
accommodated with flexible scheduling so he could use public
transportation.
A teacher with PD was having difficulty standing in front of the
classroom to write on the board. The individual was accommodated with a
scooter and a laptop
and PC projector. She was then able to remain seated while using the
computer and projector to display information to the class.
An engineer was having difficulty concentrating and communicating.
The
individual was accommodated with a quiet office free from
distractions. In
addition, her supervisor implemented a policy of scheduled
interruptions with
written reminders and assignments. The individual was also provided
with a
communication device.
RESOURCES
(This is a non-inclusive list)
Job Accommodation Network (JAN)
A Service of the U.S. DOL Office of Disability Employment Policy
West Virginia University
P.O. Box 6080
Morgantown, WV 26506-6080
800-526-7234 (Voice & TTY)
800-ADA-WORK (Voice & TTY)
http://www.jan.wvu.edu
Office of Disability Employment Policy
1331 F Street, NW
Washington DC 20004-1107
202-376-6200/202-376-6205 (TTY)
http://www.dol.gov/dol/odep/
American Parkinson Disease Association, Inc.
1250 Hylan Boulevard, Suite 4B
Staten Island, NY 10305
800-223-2732/718-981-8001
http://www.apdaparkinson.com
The American Parkinson Disease Association provides information on
local
resources, publications, videos, and referrals.
Center for Disease Control and Prevention (CDC)
1600 Clifton Rd.
Atlanta, GA 3033
404-639-3534
http://www.cdc.gov
The CDC promotes health and quality of life by preventing and
controlling
disease, injury, and disability.
Michael J. Fox Foundation for Parkinson's Research
PO Box 2010
Grand Rapids, MN 55745-2010
800-850-4726/212-604-9182
http://www.michaeljfox.org
The Michael J. Fox Foundation for Parkinson's Research was born out
of
Michael's determination to raise the significant new monies required
to fund the
Parkinson's cure and the Parkinson's Action Network's (PAN) track
record of
accomplishment in raising national awareness of Parkinson's disease.
National Parkinson's Foundation (NPF)
Bob Hope Parkinson Research Center
1501 N.W. 9th Avenue Bob Hope Road
Miami, Florida 33136-1494
800-327-4545/305-547-6666
http://www.parkinson.org
The mission of NPF is to: find the cause and cure for Parkinson's
Disease and
related neurodegenerative disorders through research; educate
general medical
practitioners to detect the early warning signs of Parkinson's
disease; educate
patients, their caregivers, and the general public; provide
diagnostic and
therapeutic services; and improve the quality of life for both
patients and their
caregivers.
Parkinson's Disease Foundation, Inc. (PDF)
710 West 168th Street
New York, NY 10032-9982
800-457-6676/212-923-4700
http://www.pdf.org
The Parkinson's Disease Foundation, Inc. is a national, non-profit
organization,
chartered in the state of New York with offices in New York City and
Chicago.
The PDF is dedicated to supporting and promoting the highest-quality
research
worldwide into the cause(s) and cure of Parkinson's disease, and for
better
symptomatic treatments.
Parkinson's Foundation of Canada
4211 Yonge Street, Suite 316
Toronto, Ontario, Canada M2P 2A9
800-565-3000/416-227-9700
http://www.parkinson.ca
The Parkinson Foundation of Canada is a not for profit, national
charitable
organization. The Foundation raises money through endowment funds,
corporate sponsorships, and public donations. Finding the cause and
cure for
Parkinson's disease remains its chief mission.
The Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605
800-786-2958/408-734-2800
http://www.parkinsonsinstitute.org
The Institute is an independent, not-for-profit organization
conducting patient
care and research activities in the neurological specialty area of
movement
disorders. The mission is to find the cause and cure for these
disorders, to
provide the best available medical care to patients with movement
disorders, to
investigate better treatment and diagnostic tools, and to develop
prevention
strategies.
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=========================================================================
Date: Fri, 27 Jul 2001 08:02:36 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Kathrynne Holden, MS, RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: Drug interactions
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Kat,
I think your concerns re medications are valid and should be addressed.
One question: is your father's neurologist a Parkinson specialist? or at
least a movement disorders specialist? Neurologists who are
"generalists" don't see as many patients with PD, and have less
experience with the symptoms and the PD medications and their
interactions with other meds. If he is not seeing a PD specialist, then
locating one would be the single best thing that you could do for him.
Another thing to rule out is nutrient deficiencies, such as B vitamins.
As your father has lost weight there is a distinct possibility that he
has suffered nutrient depletion, and sometimes this can be masked by PD
symptoms or medication side effects.
Another thing you might try is to e-mail your question to a neurologist
who is a PD specialist. You might want to ask for a recommendation for a
PD specialist in your area.
1) Dr. Abraham Lieberman, a leading specialist in Parkinson's disease,
answers
e-mails at no charge on the National Parkinson Foundation website at:
http://www.parkinson.org/
Scroll down the page to:
Ask Dr. Lieberman, NPF Medical Director
Click on this, and follow the directions. You can then
e-mail your concerns to Dr. Lieberman. He usually answers
within 48 hours.
2) University of Cincinnati, Case Western Reserve
U., and Ohio State U. Click on the Ask an Expert section,
then click on Parkinsons in the list of diseases. Dr. Arif
Dalvi, a specialist in PD, usually answers within two days.
http://www.netwellness.org/
3)Parkinson's Disease Foundation's website -- Ask the Expert
http://www.pdf.org
May take 2-3 days
My very best regards to you and your father,
Kathrynne Holden
Kat Ward wrote:
>
> Dear List,
> My name is Kathryn Ward and my father has Parkinson's. He is 68 years old and was diagnosed in 1996. He was coping as well as to be expected given the added burden of macular degeneration and retinal detachment in one eye. He became a candidate for DBS and in April 2001 had one stimulator successfully implanted. During the past month he has been experiencing fairly severe "spells" of dizziness, nausea, extreme dry mouth, flushing of his upper body, confusion, lightheadness, muscle pain and weakness, abdominal pain, loss of appetite and weight loss and erratic blood pressure. These "events" had been occurring prior to the neurosurgery but they were not as severe as they have become in the past month. Every one in his medical community seems stumped by these symptoms ( which appear to read like the side effects of Sinemet ) and last month his neurologist told him that these symptoms were not symptoms of Parkinson's.
> He has since been to the cardiologist and been tested ( Negative on all counts-- the cardiologist told him that he thought it WAS Parkinson's) and two weeks ago he was in the local ER for five hours because his BP was so high that my mother was fearful of an aneurysm and called 911. Again nothing was uncovered to account for these mysterious "spells" which came and went all day long, some being more severe than others but always knocking him down and keeping him from leaving the house. He has even had an abdominal CT which also was clear of abnormalities.
--
Kathrynne Holden, MS, RD
Author: "Eat well, stay well with Parkinson's disease"
"Constipation and Parkinson's" -- audiocassette & guidebook
"Guidelines for Medical Nutrition Therapy for Parkinson's
disease" & Risk Assessment Tools
"Risk for malnutrition and bone fracture in Parkinson's
disease," J Nutr Elderly. V18:3;1999.
http://www.nutritionucanlivewith.com/
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=========================================================================
Date: Fri, 27 Jul 2001 06:58:45 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: David Moreland <[log in to unmask]>
Subject: Re: Job Accomodations for PWP
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 07:00 AM 7/27/2001 -0400, you wrote:
When I was still working for the Oregon Department of Revenue. One idf the
accomodations that was very helful to me was the installation of Dragon,
Naturely Speaking Professional Vession 5. It took some wouk for the program
to learn my speach patterns. But it really worked well
David Moreland
>This is a great website for information on job accommodations and they
>have a section specificallly on Parkinson's . FROM the
>Job Accommodation Network,
>U.S. DOL Office of Disability Employment Policy
>Headquartered at: West Virginia University ,PO Box 6080,
> Morgantown, WV 26506-6080
>800-526-7234 in the US (Voice or TTY)
>Internet: http://www.jan.wvu.edu
>
>SEE:
>http://www.jan.wvu.edu/media/PD.html
>Accommodating People With Parkinson's Disease
>
>This site presents possible job accommodations for PWP, not actual cases.
> It is written from the perspective of the employer. What do you all
>think about it?
>Has anyone actually been allowed such accommodations at their job?
>
> PREFACE
>
> ACCOMMODATING PEOPLE WITH PARKINSON'S DISEASE
>
> According to the National Parkinson's Foundation it is estimated
>that there
> are up to 1.5 million Americans affected by Parkinson's Disease
>(PD),
> more persons than those suffering from Multiple Sclerosis and
>Muscular
> Dystrophy combined. Although 15% of PD patients are diagnosed before
> age 50, PD is generally considered a disease that targets older
>adults.
> Parkinson's disease affects one of every 100 persons over the age of
>60.
>
> Today, many people with PD are living and working with PD. As a
>result,
> employers are seeing an increase in individuals with PD among their
> employees. This, coupled with the requirements of the Americans with
> Disabilities Act (ADA), shows why knowing about workplace
> accommodations for people with PD is important.
>
> When considering accommodations for people with PD, the
> accommodation process must be conducted on a case-by-case basis.
> Symptoms caused by PD vary so when determining effective
> accommodations the person’s individual abilities and limitations
>should be
> considered and problematic job tasks must be identified. Therefore,
>the
> person with PD should be involved in the accommodation process.
>
> Not all people with PD will need accommodations to perform their
>jobs
> and many others may need only a few accommodations. For those who
> need accommodation, the following pages provide basic information
> about common limitations, symptoms, useful questions to consider,
>and
> accommodation possibilities. The following is only a sample of
> possibilities to consider; numerous other solutions and
>considerations
> may exist.
>
> Also included in this publication is a list of resources for
>additional
> information.
>
> This publication was written by Linda C. Batiste, MS, and Beth A.
>Loy, MS,
> Human Factors Consultants with the Job Accommodation Network. If
> further information is needed, please call JAN at 1-800-526-7234.
>
> 1/01
>
> QUESTIONS TO CONSIDER WHEN DETERMINING
> ACCOMMODATIONS
>
> What symptoms or limitations is the individual with PD experiencing?
>
>
> How do these symptoms or limitations affect the person and the
>person’s
> job performance?
>
> What specific job tasks are problematic as a result of these
>symptoms
> and limitations?
>
> What accommodations are available to reduce or eliminate these
> problems? Are all possible resources being used to determine
>possible
> accommodations?
>
> Has the employee with PD been consulted regarding possible
> accommodations?
>
> Once accommodations are in place, would it be useful to meet with
>the
> person with PD to evaluate the effectiveness of the accommodations
>and
> to determine whether additional accommodations are needed?
>
> Do supervisory personnel and employees need training regarding
>PD,
> other disability areas, or the Americans with Disabilities Act?
>
> ACCOMMODATION CONSIDERATIONS FOR PEOPLE WITH
> PARKINSON'S DISEASE
>
> (Note: People with PD will develop some of these
>limitations/symptoms,
> but seldom develop all of them. Limitations will vary among
>individuals.
> Also note that not all people who have PD will need accommodations
>to
> perform their jobs and many others may need only a few
>accommodations.
> The following is only a sample of the possibilities available.
>Numerous
> other accommodation solutions exist as well.)
>
> Fine Motor:
>
> Implement ergonomic workstation design
> Provide arm supports
> Provide alternative computer access and keyguard
> Provide alternative telephone access
> Provide writing and grip aids
> Provide a page turner and a book holder
> Provide a note taker
>
> Gross Motor:
>
> Reduce walking or provide a scooter or other mobility aid
> Provide parking close to the work-site
> Provide an accessible entrance
> Install automatic door openers
> Provide an accessible route of travel to other work areas used
>by the
> employee
> Move workstation close to other work areas, office equipment,
>and break
> rooms
>
> Fatigue/Weakness:
>
> Reduce or eliminate physical exertion and workplace stress
> Schedule periodic rest breaks away from the workstation
> Allow a flexible work schedule and flexible use of leave time
> Allow work from home
> Make sure materials and equipment are within reach range
>
> Speech:
>
> Provide speech amplification, speech enhancement, or other
> communication device
> Use written communication, such as email or fax
> Transfer to a position that does not require a lot of
>communication
> Allow periodic rest breaks
>
> Medical Treatment Allowances:
>
> Provide flexible schedules
> Provide flexible leave
> Allow a self-paced workload with flexible hours
> Allow employee to work from home
> Provide part-time work schedules
>
> Depression and Anxiety:
>
> Reduce distractions in work environment
> Provide to-do lists and written instructions
> Remind employee of important deadlines and meetings
> Allow time off for counseling
> Provide clear expectations of responsibilities and consequences
>
> Provide sensitivity training to co-workers
> Allow breaks to use stress management techniques
> Develop strategies to deal with work problems before they arise
>
> Allow telephone calls during work hours to doctors and others
>for support
> Provide information on counseling and employee assistance
>programs
>
> Cognitive Impairment:
>
> Provide written job instructions when possible
> Prioritize job assignments
> Allow flexible work hours
> Allow periodic rest breaks to reorient
> Provide memory aids, such as schedulers or organizers
> Minimize distractions
> Allow a self-paced workload
> Reduce job stress
> Provide more structure
>
> Activities of Daily Living:
>
> Allow use of a personal attendant at work
> Allow use of a service animal at work
> Make sure the facility is accessible
> Move workstation closer to the restroom
> Allow longer breaks
> Refer to appropriate community services
>
>
> PRODUCTS
>
> There may be products available to accommodate an employee with PD.
>For
> information on specific products and vendors contact JAN.
>
> EXAMPLE ACCOMMODATIONS FOR PEOPLE WITH PARKINSON'S
> DISEASE
>
> A secretary with PD and hand tremors was having difficulty using a
>keyboard,
> writing, manipulating manuals, and filing. She was accommodated with
>a
> keyguard, typing aid, page turner, and open files.
>
> A supervisor with PD was having difficulty managing fatigue. The
>employer
> provided a private rest area with a cot so the individual could take
>breaks
> throughout the day.
>
> A file clerk was having difficulty meeting the physical demands of
>the job,
> including walking between work areas, standing at filing cabinets,
>and carrying
> files. The individual was accommodated with a power scooter with a
>basket and
> a stand/lean stool.
>
> A technician with PD was having difficulty concentrating. The
>employee's
> supervisor provided written job instructions when possible and
>allowed the
> individual to have periodic rest breaks. In addition, she was moved
>to a corner
> cubical where distractions were minimized with strategically placed
>baffles.
>
> A customer service representative with PD was having difficulty
>manipulating his mouse, writing, standing to greet people, and
>communicating effectively. He was accommodated with a trackball, writing
>aid, stool with lift cushion, and speech amplification.
>
> A technical consultant was having difficulty using the computer in
>the afternoons due to fatigue. He was accommodated with speech
>recognition and an
> ergonomic workstation.
>
> An office assistant with tremors and fatigue was having difficulty
>typing the
> number of words per minute required by her employer. The individual
> rearranged her workstation to reduce distractions and her employer
>offered
> flexible scheduling. Her word processing software was programmed
>with
> macros to reduce keystrokes and she was given speech recognition
>software.
>
> A consultant with PD was having difficulty getting to work on time.
>He was
> accommodated with flexible scheduling so he could use public
>transportation.
>
> A teacher with PD was having difficulty standing in front of the
>classroom to write on the board. The individual was accommodated with a
>scooter and a laptop
> and PC projector. She was then able to remain seated while using the
>computer and projector to display information to the class.
>
> An engineer was having difficulty concentrating and communicating.
>The
> individual was accommodated with a quiet office free from
>distractions. In
> addition, her supervisor implemented a policy of scheduled
>interruptions with
> written reminders and assignments. The individual was also provided
>with a
> communication device.
>
> RESOURCES
> (This is a non-inclusive list)
>
> Job Accommodation Network (JAN)
> A Service of the U.S. DOL Office of Disability Employment Policy
> West Virginia University
> P.O. Box 6080
> Morgantown, WV 26506-6080
> 800-526-7234 (Voice & TTY)
> 800-ADA-WORK (Voice & TTY)
> http://www.jan.wvu.edu
>
> Office of Disability Employment Policy
> 1331 F Street, NW
> Washington DC 20004-1107
> 202-376-6200/202-376-6205 (TTY)
> http://www.dol.gov/dol/odep/
>
> American Parkinson Disease Association, Inc.
> 1250 Hylan Boulevard, Suite 4B
> Staten Island, NY 10305
> 800-223-2732/718-981-8001
> http://www.apdaparkinson.com
>
> The American Parkinson Disease Association provides information on
>local
> resources, publications, videos, and referrals.
>
> Center for Disease Control and Prevention (CDC)
> 1600 Clifton Rd.
> Atlanta, GA 3033
> 404-639-3534
> http://www.cdc.gov
>
> The CDC promotes health and quality of life by preventing and
>controlling
> disease, injury, and disability.
>
> Michael J. Fox Foundation for Parkinson's Research
> PO Box 2010
> Grand Rapids, MN 55745-2010
> 800-850-4726/212-604-9182
> http://www.michaeljfox.org
>
> The Michael J. Fox Foundation for Parkinson's Research was born out
>of
> Michael's determination to raise the significant new monies required
>to fund the
> Parkinson's cure and the Parkinson's Action Network's (PAN) track
>record of
> accomplishment in raising national awareness of Parkinson's disease.
>
>
> National Parkinson's Foundation (NPF)
> Bob Hope Parkinson Research Center
> 1501 N.W. 9th Avenue Bob Hope Road
> Miami, Florida 33136-1494
> 800-327-4545/305-547-6666
> http://www.parkinson.org
>
> The mission of NPF is to: find the cause and cure for Parkinson's
>Disease and
> related neurodegenerative disorders through research; educate
>general medical
> practitioners to detect the early warning signs of Parkinson's
>disease; educate
> patients, their caregivers, and the general public; provide
>diagnostic and
> therapeutic services; and improve the quality of life for both
>patients and their
> caregivers.
>
> Parkinson's Disease Foundation, Inc. (PDF)
> 710 West 168th Street
> New York, NY 10032-9982
> 800-457-6676/212-923-4700
> http://www.pdf.org
>
> The Parkinson's Disease Foundation, Inc. is a national, non-profit
>organization,
> chartered in the state of New York with offices in New York City and
>Chicago.
> The PDF is dedicated to supporting and promoting the highest-quality
>research
> worldwide into the cause(s) and cure of Parkinson's disease, and for
>better
> symptomatic treatments.
>
> Parkinson's Foundation of Canada
> 4211 Yonge Street, Suite 316
> Toronto, Ontario, Canada M2P 2A9
> 800-565-3000/416-227-9700
> http://www.parkinson.ca
>
> The Parkinson Foundation of Canada is a not for profit, national
>charitable
> organization. The Foundation raises money through endowment funds,
> corporate sponsorships, and public donations. Finding the cause and
>cure for
> Parkinson's disease remains its chief mission.
>
> The Parkinson's Institute
> 1170 Morse Avenue
> Sunnyvale, CA 94089-1605
> 800-786-2958/408-734-2800
> http://www.parkinsonsinstitute.org
>
> The Institute is an independent, not-for-profit organization
>conducting patient
> care and research activities in the neurological specialty area of
>movement
> disorders. The mission is to find the cause and cure for these
>disorders, to
> provide the best available medical care to patients with movement
>disorders, to
> investigate better treatment and diagnostic tools, and to develop
>prevention
> strategies.
>
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>In the body of the message put: signoff parkinsn
>
>
Yours and His
David L Moreland
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Date: Fri, 27 Jul 2001 10:50:21 EDT
Reply-To: Parkinson's Information Exchange Network
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Subject: Supplements
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Dear Norma-You reference Rob's supplement program. I missed it when it was
posted, but would be interested in learning about it. I would appreciate it
if you would post it or send it to me individually if you prefer.
Has anyone else had successful experiences with supplements they can share?
Thanks. Barbara
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Date: Fri, 27 Jul 2001 08:43:07 -0700
Reply-To: Parkinson's Information Exchange Network
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From: Paul Ayers <[log in to unmask]>
Subject: Disability/Employment
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Thanks Linda and David for your msg's. I really don't know where to start. I am already out of work, so can't talk with my company. I think I'll talk with the State of Indiana disability office first. I'm trying to find a lawyer who is skilled in this area but no luck yet. As far as job hunt, I don't know whether to tell up front or not. In my years as a manager, I probally would think it strange if an applicant could'nt fill out an application while appling. My Dr. lightly hinted at retraining, I thought that was kind of interesting. I'v been in the Telecommunication industry for 30 years, what would I cross train to that did not require similar skills? Anyway I ramble, Thanks again for your help, I'm going to check out the reccommended sites.
THanks,
Paul
---------------------------------
Do You Yahoo!?
Make international calls for as low as $.04/minute with Yahoo! Messenger
http://phonecard.yahoo.com/
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Date: Fri, 27 Jul 2001 07:56:17 -0700
Reply-To: "Mario A. Gonzalez" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Mario A. Gonzalez" <[log in to unmask]>
Subject: Re: Drug interactions
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Hi Kathryn,
What dosage of Sinemet - CR and or Regular - does he take
and how often?
Does he take all medications at the same time?
Sinemet can cause severe nausea, I know from experience.
Let us know,
Mario
----- Original Message -----
From: "Kat Ward" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, July 27, 2001 2:14 AM
Subject: Drug interactions
Dear List,
My name is Kathryn Ward and my father has Parkinson's. He is 68 years
old and was diagnosed in 1996. He was coping as well as to be expected given
the added burden of macular degeneration and retinal detachment in one eye.
He became a candidate for DBS and in April 2001 had one stimulator
successfully implanted. During the past month he has been experiencing
fairly severe "spells" of dizziness, nausea, extreme dry mouth, flushing of
his upper body, confusion, lightheadness, muscle pain and weakness,
abdominal pain, loss of appetite and weight loss and erratic blood pressure.
These "events" had been occurring prior to the neurosurgery but they were
not as severe as they have become in the past month. Every one in his
medical community seems stumped by these symptoms ( which appear to read
like the side effects of Sinemet ) and last month his neurologist told him
that these symptoms were not symptoms of Parkinson's.
He has since been to the cardiologist and been tested ( Negative on all
counts-- the cardiologist told him that he thought it WAS Parkinson's) and
two weeks ago he was in the local ER for five hours because his BP was so
high that my mother was fearful of an aneurysm and called 911. Again nothing
was uncovered to account for these mysterious "spells" which came and went
all day long, some being more severe than others but always knocking him
down and keeping him from leaving the house. He has even had an abdominal CT
which also was clear of abnormalities.
I live 300 miles away from my parents and tried to get my mother to
really keep track of when the spells were happening and what he was doing,
had eaten, timing of meds etc. but she is so overwhelmed that I wasn't able
to get much help there. I have been to see my father twice in the last two
weeks and have observed what is going on. I began to really question the
combination of his meds. He is taking Sinemet, Hytrin and Valium. All three
have almost the same side effects-- especially the Hytrin and Sinemet. My
research is leading me to strongly suspect a negative synergistic effect
caused by the combination of these three meds. The Hytrin was prescribed
over a year ago by a urologist for enlarged prostate and the Sinemet and
Valium were prescribed by the neurologist. My sister and I have both read
that Valium can interfere with the action of Sinemet.
My father re-visited the neurologist two days ago ( and my sister went
along with my parents to ask questions ) and the only thing the neurologist
could offer at this point was that the symptoms are indeed Parkinson's
moving into Stage 4. When questioned specifically about the possibility of a
negative drug interaction he was noncomittant and suggested that my father
see the neurosurgeon and get a second stimulator and told Dad to make his
next appointment for a month from now. When asked why the Valium was
prescribed for my father the neurologist said to help Dad "relax" and gave
no indication that taking Valium and Sinemet at the same time was a problem
in his mind. (Needless to say, we are not pleased with this treatment but
right now our primary concern is Dad's condition.) I am hoping that someone
on the List can shed some light on these mysterious symptoms...are they
"just Parkinson's getting worse" or are they indeed indicative of a drug
toxicity? I'm pretty sure from research and observation that the Sinemet
alone isn't causing these symptoms. Is there anyone taking Hytrin and
Sinemet or Valium and Sinemet or all three medications? Is anyone having
similar kinds of "spells" as simply a part of Parkinson's? Has anyone else
had a stimulator implanted and experienced these symptoms? ( I tend not to
suspect the stimulator because immediately after the implant the tremors and
arm/leg waving that Dad was experiencing stopped and he looked and felt
really well, but I have to look at all the issues).
Any information or suggestions from the Parkinson's Community will be
appreciated greatly.
Thank you
Kathryn Ward
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Date: Fri, 27 Jul 2001 12:58:35 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Ivan M Suzman <[log in to unmask]>
Subject: Re: Disability/Employment
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Paul,
Each U. S. state has, I am told, a federally-funded DIsability
Rights office that can guide you. There are
lawyers with experience there.
Good luck
Ivan
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Date: Fri, 27 Jul 2001 13:20:34 EDT
Reply-To: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: The Wisconsin legislature and stem cell research
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Hello,
A few days ago the Wisconsin legislature finally passed its budget,
and sent the budget to the governor. The media. particularly the television
news reports, and even in very catholic Green Bay, have designated the
legislature as being in support of stem cell research, have described the
budget as a victory for stem cell research , and have touted the University
of Wisconsin-Madison as being the pioneer, the leader, in stem cell research.
Very interesting. The main Green Bay newspaper, and the television
stations, only discovered stem cells and stem cell research about two weeks
ago, and the media here do not routinely cover state legislative matters. (I
find out what is going on with the state by going online with the Milwaukee
paper). A few weeks ago a female legislator from Green Bay received
considerable state and local coverage, and I think national coverage as well,
for her strong, vocal support of a proposal in the state budget to ban stem
cell research. This legislator was interviewed as part of the Green Bay
paper's coverage of the passage of the budget, and she was represented, at
the end of a long, pro-stem -cell-research article, as being in support of
the budget as passed and as stating that her pet projects were included in
the budget. I don't know what she said to the reporter, but nothing was
mentioned in that portion of the article about about her and stem cells, stem
cell research, or her support of the ban against stem cell research. I think
I remember an editorial in the Green Bay paper which was in favor of stem
cell research, but I am not certain because I have been reading so many
articles about stem cells. I do remember a cartoon, on the editorial page,
done by the paper's own editorial artist; that cartoon was in favor stem cell
research and directly confronted the position of anti-abortionists against
stem cell research. There was an anti-abortion demonstration in Green Bay
after the passage of the budget, but the paper buried its coverage of the
demonstration in the back of the first section of the newspaper, and the
paper never made any connection to stem cells or the passage of the budget.
The Pope, who is very popular in Green Bay, received front page coverage for
his meeting with President Bush, but the Pope's subsequent statement to Bush
was buried also.
What occurred in the Wisconsin state legislature was that a budget
proposal to ban stem cell research was not passed, was deleted from the state
budget. My understanding is that there is nothing in the budget now as
passed by the legislature about stem cells or stem cell research. That meant
that the new governor, who appears to favor the ban against stem cell
research, cannot exercise his line item veto power to quash stem cell
research or to support the anti-stem cell research lobby. When looking at
legislative history to interpret the meaning of a law, the courts look at,
among other things, whether or not a specific provision of the law was not
passed, was defeated on the legislative floor. I don't think it is general
practice for the media to promote a defeated provision of a law as a sign of
favorable legislative support for an idea or a program.
This is very conservative, catholic Green Bay, Wisconsin. Politics is
always politics. But the media, it surprises me sometimes. Obviously it is
favorable to supporters of stem cell research to have the media in Green Bay,
and I think elsewhere in the state of Wisconsin, to put stem cell research in
a favorable light--and don't forget those innovative researchers, a source of
state pride, toiling away at the University of Wisconsin, who have also been
put in a favorable light as well. There have been postings before, on this
list, about editorial slants in the writing, editing, and presentation of
newspaper articles on stem cells and stem cell research. We all know it goes
on in the media, all forms of the media. The media have a lot of power, and
I don't mind my fellow Green Bayites, Packer backers, whatever we are called,
to hear in the evening news or to read in the morning papers that the state
legislature favors stem cell research and that the state is on the cutting
edge of stem cell research. Maybe, some progress, at last. What a relief!
I thought that our state legislature just might, as part of the budget, pass
the ban against stem cell research. I think I see here in Green Bay, and
elsewhere across the country, a turning of the tide where more and more
people are supporting stem cell research as a potential treatment, as a
potential cure against various diseases, including Parkinson's Disease. I
hope that my observation is valid. And thanks to Murray, Linda H., Ray on
the Prairie Abyss, and whoever else, for putting stem cell material on the
list. Katie
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Date: Fri, 27 Jul 2001 13:46:54 EDT
Reply-To: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: Re: Disability/Employment
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Paul,
To find an attorney in this area of law, check with the Indiana State
Bar Association or look in the yellow pages of your phone book under lawyer
referral services. Most state bars have referral services where an attorney
can claim an expertise in an area of law and be put on a list for referral in
that area of law. You probably can't find this type of expertise in a small
town or in a rural area; you are going to have to look in a larger,
metropolitan area. You can ask a local attorney for referral to an expert.
You can ask local and state Parkinson's support groups and
organizations/foundations for a referral. You can ask people you know for a
referral. Fees are always a problem with these specialized attorneys, but
ask for an initial consultation/meeting to be free. If that attorney does
not want your case, or the attorney is too expensive, ask for a referral to
someone else. Finding an attorney to help you in your case is not a formal
process: ask enough people and you should bump into an attorney to help you.
Katie.
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Date: Fri, 27 Jul 2001 15:29:52 EDT
Reply-To: Parkinson's Information Exchange Network
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From: "Edie Luther." <[log in to unmask]>
Subject: Re: Don Berns' 7 1/2 Year Pallidotomy Report
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Congratulations, George. I never had any doubts about you..
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Date: Fri, 27 Jul 2001 20:19:23 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Norma Dikeman <[log in to unmask]>
Subject: Re: Supplements
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I think Schaaf Angus / Meadow Creek Ranch can tell you a whole lot more but
right now Gordie is taking:
A multi vitamin mineral one-a day
A Calcium / Magnesium supplement (900 mg calcium)
200 mg of CO Q 10 (will increase shortly to 300 mg)
800 mg of vitamin E (will increase to 1200)
2000mg vitamin C (increasing to 3000
800 mcg folate
650 mcg vitamin B12
a B -complex containing B-1 150mcg
B-2 150 mcg
B-3 150 mcg
B-6 150 mcg
Biotin 150 mcg
Pantothenic acid 150 mg
PABA 100 mg
Zinc 50 mg
Ginko Biloba 80 mg
Milk Thistle 300 mg
I can't list all the things in the one-a day but it is the one for seniors.
Centrum Silver
We are still missing a few and increasing slowly so I don't give him digestive
problems
Norma
[log in to unmask] wrote:
> Dear Norma-You reference Rob's supplement program. I missed it when it was
> posted, but would be interested in learning about it. I would appreciate it
> if you would post it or send it to me individually if you prefer.
>
> Has anyone else had successful experiences with supplements they can share?
> Thanks. Barbara
>
> ----------------------------------------------------------------------
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Date: Fri, 27 Jul 2001 18:34:07 -0700
Reply-To: Parkinson's Information Exchange Network
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From: "Stacey L. Downing" <[log in to unmask]>
Subject: My Introduction
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Hello, I wanted to share my letter to the President (even though I am fairly
certain he will never read it)
Dear Mr.. President,
I am a thirty eight year old woman who has been diagnosed with Parkinson's
Disease. I believe in the right to life as well as the right to choose and
I believe a man should pay for his crimes imprisoned rather than put to
peace. That is really what death is - peace. So, you see we differ and yet
agree on many issues not unlike all of America. I have no idea what God is
thinking about the stem cell issue or if he considers the cells they are
using life. Does it have a soul? Unfortunately we can never know. What we
are faced with is the fact that this research could end the suffering of
those we do know God considers life and if you believe in spiritual things,
are positive have a soul. Might we consider this research like the rowboat
in a storm. Would we recognize God's help if we were looking it in the eye?
Is it right to play with the creation of life in the first place? Any
childless couple longing to be parents would argue that this method of
science is their rowboat in the storm. The fact is that this method of
science is being used and the life that is produced is no different than one
created from natural methods. Who knows for sure that intercourse is the
only way that God intended for life to be created? The next fact is that
this method of science has "residual" that is proving to be the key to a
"cure" for diseases threatening the lives of millions of people. Would we
recognize God's help if we were looking it in the eye?
As far as I know, God is not living amongst us in the physical form. Anyone
claiming to be him would surely be cast aside and labeled crazy. Yet, he is
present and individual interpretation of what he may or may not be thinking
is the foundation for many important decisions, most recently the decision
to fund stem cell research. I don't know. Unlike those opposed to funding
the research, who claim to know exactly what God is thinking, I simply do
not. I do know that this research has the potential of changing the futures
of millions of people. Would we recognize God's help if we were looking it
in the eye?
Thank you for your time,
Stacey Downing
Please visit us at www.bid4cure.com where we are raising funds for private
research
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Date: Fri, 27 Jul 2001 21:53:14 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Camilla Flintermann <[log in to unmask]>
Subject: Re: My Introduction
In-Reply-To: <[log in to unmask]>
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>Hello, I wanted to share my letter to the President (even though I am fairly
>certain he will never read it)
>
Dear Stacey--that was a powerful letter--I hope somebody reads it--- if
not W. then one of his aides who might be impressed enough to pass it
on...thanks for sharing it--I've always loved the rowboat in a storm story.
Camilla Flintermann
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
"A single voice among thousands stands alone,
but a thousand voices united as one,
stand to make a difference!"
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Date: Sat, 28 Jul 2001 02:08:33 EDT
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From: Sam Kalkstein <[log in to unmask]>
Subject: Re: My Introduction
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Date: Sat, 28 Jul 2001 00:33:28 -0600
Reply-To: Parkinson's Information Exchange Network
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From: Schaaf Angus / Meadow Creek Ranch <[log in to unmask]>
Subject: Six in Ten Americans Favor Stem Cell Research
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This just came over MedScape !=20
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Date: Sat, 28 Jul 2001 00:13:59 -0700
Reply-To: Parkinson's Information Exchange Network
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From: Phyllis <[log in to unmask]>
Subject: Re: Supplements
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I am aware that each person is different. For me, supplements have been
miraculous. My diagnoses was made in January 2001 with symptoms of postural
instability, stiffness, bradykinesia and internal tremor. Secondary
symptoms of extreme fatigue, mind in a fog, memory loss, peripheral
neuropathy, restless leg syndrome, muscle cramps, insomnia, depression to
name a few.
I participated in a study at the University of Arizona with an agonist
which
made me nauseous, caused me to fall asleep at inappropriate times, caused
more depression and dreaming. I left the study and decided not to take the
prescription meds because of the side effects and pursued alternative
medicine. I have seen a metabolic physician, a medical doctor that focuses
on alternative medicine and 3 chiropractors that specialize in contact
reflex analysis. The internet has also been extremely helpful. I have seen
two neurologists, the first one who diagnosed my condition and then Dr.
Sherman who is the head of the movemnt disorder clinic at the University of
Arizona (and I am now his patient). He is excellent and has given his
opinion on some of the supplements I am taking that are more specific to
Parkinsons.
My personality is such that if something will not hurt you and may help I
go
for it and that is exactly what I am in the process of doing now.
Half of the supplements I am taking are to optimize my general health. All
three of the chiropractors' goals are to get my body to be functioning
perfectly so that the body will contribute to healing itself. The contact
reflex analysis is a form of strength testing that reveals what supplements
you need. The metabolic physician did 16 vials! of blood work with the
goal to also get all my blood results to be in the optimum range.
As expected the amino acid profile (brain function) was a mess (Many
hormones and neurotransmitters are derived from amino acids. Therefore, the
intake of sufficient amounts of essential amino acids is important to
maintain the proper function of intercellular communication. Examples of
amino acid-derived hormones and neurotransmitters are g-aminobutyric acid
(GABA), histamine, serotonin, melatonin, thyroxine, and the catecholamines
dopamine, norepinephrine (noradrenalin), and epinephrine (adrenalin).
My levels: Serine 68 (normal 95-190), Asparagine 43 (normal 50-120),
glycine 195 (barely in normal range 180-575),
glutamine 468 (500-850), histidine 46 ((60-110), arginine 41 (60-150) while
the rest were in normal range including the phenylalanine which I had been
supplementing before the blood tests.
The supplements prescribed were:
L-Arginine, L-glutamine and acetyl-L-carnitine along with
phosphatidylserine. I continue to take the Phenylalanine. without these I am
extremely tired, depressed, poor memory.
Marcia Roper was extremely helpful (she has written a book concerning PD)
and insisted on the importance of optimal thyroid function with a complete
thyroid study and my thyroid has been fine tuned.
There has been much talk about Vit E, Vit C and Coenzyme Q10 and I am taking
these. If I stop the C and E my restless leg syndrome returns!
My diet has been radically improved (also Marcia Roper's suggestion plus my
chiropractor's) and includes carrot juice, green food, brown rice, protein
powder, no white flour, very little sugar, very little caffeine - sounds
awful but I worked into it gradually and I do eat fairly normally at dinner
and I am beginning to really like my food routine. I am walking about 25
minutes every night (I don't like it and am very afraid I may stop).
I am happy, sleep well at night and the symptoms are greatly diminished
which was not the
case before my pursuit for optimal health. I feel normal!
I have not given the doses I am taking because I am not telling others what
to do but just sharing my journey.
I hope this helps
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Date: Sat, 28 Jul 2001 03:33:07 -0700
Reply-To: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: NEWS: Legislators to Bush: Back Stem Cell Research, Legislators
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Legislators to Bush: Back Stem Cell Research, Legislators
Saturday, July 28, 2001
BY FREDERIC J. FROMMER
THE ASSOCIATED PRESS
WASHINGTON -- More than 200 members of Congress,
including 40 Republicans, have sent a letter to President Bush
urging him to support federal funding
of embryonic stem cell research.
"You have the lives of millions of our -- and your --
constituents in your hands," the 202 lawmakers wrote.
Circulated by Reps. Jim Ramstad, R-Minn., and Diana DeGette,
D-Colo., the letter cites reports that a private lab has created
human embryos for stem cell research as evidence that federal
oversight is needed.
"The only way to ensure that embryonic stem cell research
is conducted with strict ethical and legal guidelines is to provide
federal funding and oversight," the letter states.
The lawmakers also note the research's potential to find cures
for diseases.
White House spokesman Scott McClellan said the president was
still weighing "all of the scientific and ethical issues involved."
Last week, 59 senators sent Bush a letter supporting the research.
More than a dozen Republican senators are on record urging
Bush to support the research, including Bill Frist of Tennessee,
the Senate's only physician, who opposes abortion.
Other abortion opponents are against the research because
the embryos would have to be destroyed to conduct the research.
Some scientists say stem cell research could benefit more than
100 million patients with such disorders as Alzheimer's disease,
Parkinson's disease, diabetes and spinal cord injuries.
Most of the Republicans who signed the letter, including
Ramstad, support abortion rights.
"With my own mother totally debilitated by Alzheimer's disease,
a first cousin who died from diabetes and several close friends
suffering from Parkinson's disease and spinal cord injuries,
I plead with you to give hope to my loved ones and 100 million
other Americans suffering from cruel, deadly diseases,"
Ramstad said.
The anti-abortion lawmakers who signed the letter include
Phil English, R-Pa., Randy Cunningham, R-Calif.,
and John Duncan, R-Tenn.
SOURCE: The Salt Lake Tribune
http://www.sltrib.com/07282001/nation_w/117208.htm
* * *
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Date: Sat, 28 Jul 2001 04:16:51 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: Yahoo's Full Coverage ....
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Hi All,
Yahoo's full coverage (on any subject) just gets better 'n better.
Full coverage means what it says... Sorta "one stop shopping"
on the topic of your choice....
In this example I chose "Human Stem Cell Research".
Go to this LINK and see if you don't agree....
House Members Back Embryonic Stem Cell Research
http://dailynews.yahoo.com/h/nm/20010727/pl/health_stemcell_house_dc_1.htm=
l
As you read the article you will find "links" all over the page...
F'rinstance...
Among the other diseases that could be addressed with
therapies involving stem cells are Parkinson's disease (news
Click on "news"....
Search Result Found 186 news articles for "Parkinson's disease"
Yahoo! News Story Matches 1 - 20 of 186
http://search.news.yahoo.com/search/news?p=3D%22Parkinson%27s%20disease%22=
&c=3D&n=3D20&yn=3Dc&c=3Dnews&cs=3Dnw
Read about "Neotrofin"...
Yahoo has an "Alert" option...
Alert Me - Email me when there are new articles matching "Parkinson's
disease"
At the top of the page you will see a "Toolbar" with Links to:
News Home - Yahoo! - My Yahoo! - News Alerts - Help - Reuter's Media
Just below that is another series...
Home - Top=A0Stories - Business - Tech - Politics - World - Local -
Entertainment - =A0Sports - Op/Ed -=A0Science - Health - Full=A0Coverage
go ahead... Explore... Make it yer home page...
Yahoo is "addictive".
Don't say I didn't warn ya...
And... a'int it great!!
Cheers ....... murray
PS: Don't click on "more"...
* * *
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Date: Sat, 28 Jul 2001 10:00:42 -0700
Reply-To: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: CNN: Christopher Reeves speaks out on Stem Cell Research...
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CNN: Christopher Reeves speaks out on Stem Cell Research
on Sunday's "Late Edition With Wolf Blitzer"
CNN's "Late Edition With Wolf Blitzer" Condoleezza Rice,
national security adviser; House Minority Leader Dick Gephardt,
D-Mo.; Rep. J.C. Watts, R-Okla.; Christopher Reeve, disability
activist, actor and producer; defense attorney Roy Black, former
Attorney General Richard Thornburgh; former White House
special counsel Lanny Davis. 9 a.m. PDT; NOON Eastern....
Watch CNN's "Late Edition With Wolf Blitzer" Sunday...
Cheers .... murray
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Date: Sat, 28 Jul 2001 14:16:44 EDT
Reply-To: Parkinson's Information Exchange Network
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From: "Jacob M. Drollinger" <[log in to unmask]>
Subject: Shot down again
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Dear friends,
The pharmacueicals industry and the medical establishment has once again shot
down a potentially promising treatment by labeling it "ineffective." NIL-A,
the first (and probably last) neuroimmunophilin drug has, it seems, gone the
same route as GDNF and fetal tissue implants. "No conclusive evidence to say
it improves P.D. symptoms" is what they say. When the truth of the matter is,
the people responsible for the findings, i.e. the medical and drug community,
have too much at stake.
Think about it for a minute: why would an industry, supported by over a
million people (the numbers as you know are growing daily), all of a sudden
offer them a cure, thereby cutting off their means of income, which is pretty
substancial.
Stem cells will be next, I am sure. If there is no possible way to prove them
ineffective, I am sure that research and possible treatment will be outlawed.
Call me a pessimist, but do you like apples?
I call it a conspiracy.
How do you like them apples?
Jacob
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Date: Sat, 28 Jul 2001 12:28:24 -0600
Reply-To: Parkinson's Information Exchange Network
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From: Schaaf Angus / Meadow Creek Ranch <[log in to unmask]>
Subject: Re: Shot down again
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Dear Jacob,
This really makes sense. Why would the medical and pharmaceutical industry
give up all of those millions each year they bilk off of the public to
chance finding a cure. Unfortunately , the stem cell research which sounds
so promising will probably go away because of Lobbists and Money not because
the people dont want it. Rob and Deb
----- Original Message -----
From: "Jacob M. Drollinger" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, July 28, 2001 12:16 PM
Subject: Shot down again
> Dear friends,
>
> The pharmacueicals industry and the medical establishment has once again
shot
> down a potentially promising treatment by labeling it "ineffective."
NIL-A,
> the first (and probably last) neuroimmunophilin drug has, it seems, gone
the
> same route as GDNF and fetal tissue implants. "No conclusive evidence to
say
> it improves P.D. symptoms" is what they say. When the truth of the matter
is,
> the people responsible for the findings, i.e. the medical and drug
community,
> have too much at stake.
> Think about it for a minute: why would an industry, supported by over a
> million people (the numbers as you know are growing daily), all of a
sudden
> offer them a cure, thereby cutting off their means of income, which is
pretty
> substancial.
> Stem cells will be next, I am sure. If there is no possible way to prove
them
> ineffective, I am sure that research and possible treatment will be
outlawed.
> Call me a pessimist, but do you like apples?
> I call it a conspiracy.
> How do you like them apples?
>
> Jacob
>
> ----------------------------------------------------------------------
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Date: Sat, 28 Jul 2001 16:09:49 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Barbara Mallut <[log in to unmask]>
Subject: Re: Yahoo's Full Coverage ....
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Hey Murray (waving atcha) Is it possible that this wonder-of-all-wonders
=*YAHOO*= still FREE to one and all? Huh Murray, HUH?? 'Cause speaking for
myself only, I sure am tired of AOL!
Hugs atcha....
Barb Mallut
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Date: Sat, 28 Jul 2001 16:36:36 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Pharmaceuticals--was "Shot down..."
In-Reply-To: <[log in to unmask]>
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The other night there was a feature on one of the news magazine TV shows
(maybe Primetime, or 60 Minutes 2, that gave examples of how the
pharmaceutical. companies *legally* can delay or stop the development of
generics as their patents are close to expiration. All they have to do is
get a NEW patent on something like the shape of the pill, the way it
breaks (into 1/2 or 1/3) etc---and the courts AUTOMATICALLY delay the
generics for two and a half YEARS ! This is outrageous !
There's a bill in Congress to stop this automatic delay--I THINK it may be
co-sponsored by McCain. If anyone knows more about it, please post the
info so there can be some advocacy from our community.
Camilla Flintermann, former CG for Peter 83/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
and also at http://members.tripod.lycos.nl/genugten/flinterm.htm
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at http://www.pdcaregiver.org
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Date: Sat, 28 Jul 2001 17:56:22 EDT
Reply-To: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: Re: Shot down again
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Hi Jacob and Group -
I couldn't disagree with you more. This "conspiracy theory" has the same
ring to it as those involved with the so-called "100 miles-per-gallon"
carburetor or the "free electricity" schemes. In these situations the oil
and power companies supposedly have squashed the development of technologies
that would hurt their businesses. Hog wash!
The truth of the matter is that each of the drug companies spend millions on
research every year. Only after they've spent some big bucks can they apply
for Government approval just to put the new therapy into Phase 1 trials. In
most studies Phase 1 is just designed to test the safety aspects. After
that, Phase 2 will begin to look at efficacy issues. As you might imagine,
none of this is cheap in terms of finance, resources, or time.
Most of you know that I am part of the porcine fetal cell xenotransplantation
project. Let me assure you; the scientists who are with this experiment are
with it in earnest. I also met with the company's CEO about a year after the
operation. Part of this personal conversation was to determine whether or
not the company was going to commit an ADDITIONAL $50 Million to the basic
research. Does this sound like they're NOT looking for a cure? I don't
think so.
While we might not like the way drug and biotech companies run their firms
(and price their products), it is wrong to accuse them of undermining their
own scientists and researchers. For them money is the name of the game and
it would be foolish to allocate funds to dead-end projects. The shareholders
would simply not put up with this sort of nonsense. But they realize that
many dollars have to be spent first to determine what has potential and what
does not.
Parkinson's disease is considered to be the most curable of the neurological
maladies. While horrible enough, I'm grateful that it's not MS or
Huntington's or worse. At least a lot of money is being spent on finding the
cure and public awareness of PD has never been as high as it is now.
Regards -
Jim Finn
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Date: Sat, 28 Jul 2001 18:27:20 EDT
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From: Noma DePew <[log in to unmask]>
Subject: Re: Yahoo's Full Coverage ....
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Thanks, Murray....this is really going to help me convince some die-hards who
are against stem cell research....hopefully.
Bunny
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Date: Sat, 28 Jul 2001 18:34:21 EDT
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From: Rees Jenkins <[log in to unmask]>
Subject: Re: Shot down again
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Fellow Parkies,
Jim is 100% right. Just because a drug company tries and fails to find a
treatment for PD, one cannot conclude that they are conspiring against us.
Thank goodness that Amgen and others are at least trying (despite the fact
that other illnesses provide larger and more lucrative markets). Failure is
not a sign of bad intentions. It's a sign that we have to pick ourselves up,
dust ourselves off, and continue supporting those who are trying to help us
(even if their motive is profit). Tomorrow will be another day.
Failure is also a sign that somebody took a risk. If anything's certain
about finding a cure for PD, people are going to have to take risks. Let's
pray for courage for both us, PWPs, and for those who devote their careers
toward finding a cure when there is no guarantee that any one of them will be
the one who succeeds.
Rees Jenkins
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Date: Sat, 28 Jul 2001 17:15:48 -0700
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From: Genene Hill <[log in to unmask]>
Subject: re. Shot down again
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The Amgen 474 24 week trial was a very aggressive trial with a high
benchmark for hypotheses proof. As I read the news release and after
talking with contacts at Guilford and Amgen, I come to the following
conclusions. The trial met the first hypothesis of being a safe drug. It
failed on the second hypothesis to improve motor skills by 4 points.
However, there were secondary results that are significant. Those on the
placebo lost dopamine neurons and did not produce new sprouts. Those on the
low dose produced dopamine neurons and sprouting occurred and the high dose
group produced more dopamine neurons and sprouts. The test proved that
there were biological changes with use of the drug. Now they are studying
subsets of the study group such as age, stages of the disease, etc. for more
information. It may be that it takes longer than 24 weeks for motor skills
to improve. It seems to me very significant that dopamine neuron density
and sprouting actually did occur. The scientists and doctors will carefully
analyze the data and decide where to proceed from here. It isn't over until
it's over.
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Date: Sat, 28 Jul 2001 17:50:20 -0600
Reply-To: Parkinson's Information Exchange Network
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From: Nita Andres <[log in to unmask]>
Subject: Re; Medical and Parmaceutical
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There is such a thing as orphan drugs, that the companies
did not make enough money on , but reinstated them after
public protests. Try it. I don't remember whether they said
they were not effective or not. It is worth a shot. Nita
Andres
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Date: Sat, 28 Jul 2001 19:11:08 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: DIANE/GREG NICOLAOU <[log in to unmask]>
Organization: DIANE/GREG NICOLAOU
Subject: Re: Shot down again
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Jim and all.
I Agree. Finding a cure is real to me and i'm hoping it will be fairly soon,
in fact I BELIEV E it will happen, its one thing that keeps me going with a
positive attitude. Its to hard to go along with the 'conspiracy theory'.
Diane
----- Original Message -----
From: <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, July 28, 2001 5:56 PM
Subject: Re: Shot down again
> Hi Jacob and Group -
>
> I couldn't disagree with you more. This "conspiracy theory" has the same
> ring to it as those involved with the so-called "100 miles-per-gallon"
> carburetor or the "free electricity" schemes. In these situations the oil
> and power companies supposedly have squashed the development of
technologies
> that would hurt their businesses. Hog wash!
>
> The truth of the matter is that each of the drug companies spend millions
on
> research every year. Only after they've spent some big bucks can they
apply
> for Government approval just to put the new therapy into Phase 1 trials.
In
> most studies Phase 1 is just designed to test the safety aspects. After
> that, Phase 2 will begin to look at efficacy issues. As you might
imagine,
> none of this is cheap in terms of finance, resources, or time.
>
> Most of you know that I am part of the porcine fetal cell
xenotransplantation
> project. Let me assure you; the scientists who are with this experiment
are
> with it in earnest. I also met with the company's CEO about a year after
the
> operation. Part of this personal conversation was to determine whether or
> not the company was going to commit an ADDITIONAL $50 Million to the basic
> research. Does this sound like they're NOT looking for a cure? I don't
> think so.
>
> While we might not like the way drug and biotech companies run their firms
> (and price their products), it is wrong to accuse them of undermining
their
> own scientists and researchers. For them money is the name of the game
and
> it would be foolish to allocate funds to dead-end projects. The
shareholders
> would simply not put up with this sort of nonsense. But they realize that
> many dollars have to be spent first to determine what has potential and
what
> does not.
>
> Parkinson's disease is considered to be the most curable of the
neurological
> maladies. While horrible enough, I'm grateful that it's not MS or
> Huntington's or worse. At least a lot of money is being spent on finding
the
> cure and public awareness of PD has never been as high as it is now.
>
> Regards -
>
> Jim Finn
>
> ----------------------------------------------------------------------
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Date: Sat, 28 Jul 2001 17:55:52 -0600
Reply-To: Parkinson's Information Exchange Network
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From: Nita Andres <[log in to unmask]>
Subject: Re: Stem Cells
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They are being used in England, exported by Israel and Japan
( as Murray reported ). Write, write and write again. Get
your friends and relatives to write. Or if my husband were
not to old we would find a way. As it is I am writing and
writing. Don't e-mail or fax, GWB does not have it answered.
Even if it is a form letter and the one I saw appeared to
be. So don't stop. Nita
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Date: Sat, 28 Jul 2001 23:06:45 EDT
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Hello.
I never particularly liked DuPont, its history and its products, but
whenever I went into the neurologist's office to pick up my packages of
lodosyn, I thanked DuPont. I received lodosyn, to counteract the side
effects of sinemet, for over two years, and I know others who received it for
a longer period of time. Lodosyn has to have been/has to be an "orphan
drug," and it was provided by DuPont, free of charge, for a long time. Now I
buy lodosyn at the pharmacy like any prescription drug. I can be cynical,
and say that DuPont created a ready market for lodosyn, when it did go on the
market as a regular prescription drug for sale. On the other hand, I can say
DuPont did not have to provide this orphan drug for me and others, and for
free, and for however long it did that. Sure, I ask why, why did DuPont do
this? This drug is for people with Parkinson's disease who have nausea, or
vomit, when they take sinemet: how many people is that? How much money
did/does DuPont make on lodosyn? Probably not that much.
I would like to think, and I recognize I may be naive, that not every
company, not every corporation, is motivated solely by profit, by money, all
the time. I think the thought that drug companies may be/are motivated to
forestall a treatment and/or a cure to a debilitating disease because they
will lose money from being unable to have a market for current medications is
a very clever, and provocative thought, and that thought does need to be
considered and examined, but I would like to think, I would like to hope
that somewhere someone in those big, bad drug corporations says lets make
this orphan drug and give it away for free or lets develop this drug and hope
for a treatment and/or a cure for Parkinson's Disease. Katie
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