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/
__________________________________________________
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 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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In the body of the message put: signoff parkinsn
=========================================================================
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
Content-Transfer-Encoding: 7bit
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]>
Organization: QUALCOMM Eudora Web-Mail (http://www.eudoramail.com:80)
Subject: Re: PD+ syndromes
Mime-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
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
>
>----------------------------------------------------------------------
>To sign-off Parkinsn send a message to: mailto:[log in to unmask]
>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: Thu, 26 Jul 2001 22:29:21 -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: Fw: ACTION ALERT from PAN
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
--------- 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
<[log in to unmask]>
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
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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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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
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From: "Kathrynne Holden, MS, RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: Drug interactions
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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
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From: David Moreland <[log in to unmask]>
Subject: Re: Job Accomodations for PWP
In-Reply-To: <[log in to unmask]>
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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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>
>
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
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: Supplements
MIME-Version: 1.0
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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
<[log in to unmask]>
Sender: 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
<[log in to unmask]>
From: "Mario A. Gonzalez" <[log in to unmask]>
Subject: Re: Drug interactions
MIME-Version: 1.0
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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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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
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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
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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
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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
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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
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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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From: Camilla Flintermann <[log in to unmask]>
Subject: Re: 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 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
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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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<DIV><FONT face=3DArial size=3D2>This just came over MedScape !=20
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Date: Sat, 28 Jul 2001 00:13:59 -0700
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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
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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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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
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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
<[log in to unmask]>
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
<[log in to unmask]>
Sender: 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
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: 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
Reply-To: Parkinson's Information Exchange Network
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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
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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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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Sender: 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
>
> ----------------------------------------------------------------------
> 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: Sat, 28 Jul 2001 17:55:52 -0600
Reply-To: Parkinson's Information Exchange Network
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Sender: 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
Reply-To: Parkinson's Information Exchange Network
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Subject: Re: Shot down again
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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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