DON ANDERSON            SS disability payments are difficult
if you dont have the certain words or definitions they are looking
for. I have a guideline folder on just how to apply, what to say etc
etc. It worked for me and ive given the info to others. The info came from
the Parkinsons Action Network in Washington. If you would like a copy of
this contact me at 904 553-4627 or email   at [log in to unmask] and i'll be
glad to send you a copy.It really helped me. I was denied on my 1st appl.
but my second try went thru easily.

        Good luck Don             Rob



----------
From:   Parkinson's Information Exchange on behalf of Automatic digest
processor
Sent:   Friday, March 14, 1997 8:19 AM
To:     Recipients of PARKINSN digests
Subject:        PARKINSN Digest - 13 Mar 1997 to 14 Mar 1997 - Special issue

There are 16 messages totalling 922 lines in this issue.

Topics in this special issue:

  1. Silverman tape
  2. virus warning: Fwd: Read carefully (fwd)
  3. PWP Employment
  4. (LONG) trouble getting approved for disability status  - help yhelp
ayudar
     me
  5. Udall Bill: Thanks For Helping Convince Sen. D'Amato
  6. Can't keep eyes open
  7. PENPALS VIRUS HOAX
  8. Request for info on hot feet
  9. Brain News - Cell Programming Can Now Be Directed
 10. PD, ALS and MSA
 11. Symmetrel/sex change/'improper' meds
 12. Rates of illness in different populations
 13. just learning
 14. Udall: General Plan & NJ Advocates
 15. Introducing  myself
 16. Udall  Re: WE HAVE A PLAN !

----------------------------------------------------------------------

Date:    Fri, 14 Mar 1997 00:46:37 -0500
From:    "B.Bruce Anderson" <[log in to unmask]>
Subject: Silverman tape

I haven't been able to find a Lee Silverman PD Speech Therapist except for
one 65 miles away.  Has anyone here had any success with a plain old garden
variety speech therapist?  If so, is there anything in paticular you think
I should ask about when I talk to her/him, other than have you had PWPs as
patients?  I would appreciate any input.

BTW, I was quite disappointed in the Lee Silverman video.  For $70, I think
it was, it was far to short -- about 15 minutes. The process seemed
promising, but the price was unfair for what was delivered.

------------------------------

Date:    Thu, 13 Mar 1997 22:52:40 -0500
From:    Barbara Mallut <[log in to unmask]>
Subject: Re: virus warning: Fwd: Read carefully (fwd)

Maggie's right, Bill.... There are no "email virus'," however, there CAN be
attachments added to an email which can pass on a virus IF executed.

I work for Microsoft, and following is the latest virus warnings they sent to
our staff.

Barb Mallut
[log in to unmask]
------------------------------------------------------------------

New Virus Generates Random E-mail
by Yardena Arar, PC World
(February 21, 1997) --

Microsoft Word and MS Mail users, beware. The latest twist in computer viruses
is one that spreads itself by sending e-mail randomly to people on a user's
mailing list--along with an infected document.

Because any active Word document can be sent, the virus could transmit
confidential information as well as the infection itself. And because the
e-mail typically arrives from a friend or associate, with the subject line
"You've Got to Read This," unsuspecting recipients are likely to click on the
Word attachment--thereby infecting their copy of Word and starting the cycle
all over again, said officials at McAfee Associates, specialists in antivirus
software.

McAfee disclosed details about the so-called ShareFun virus after it was
reported by an unnamed corporate client earlier this week. A new, prerelease
version of McAfee's VirusScan--available for download at McAfee's Web
site--can identify and purge the virus.

Like the highly publicized Concept virus that infects Microsoft Word
documents, the ShareFun virus is written in the macro language used by Word 7
and earlier versions. Also like Concept, it typically travels as an infected
Word document attached to e-mail. It is activated when the recipient clicks on
the attachment, and from then on infects every Word document created or edited
by the user.

The difference is that one out of every four times the virus is activated (by
editing a Word document), it will seek out MS Mail on the user's machine,
choose three names from the mailing list, and send each of them e-mail with a
copy of the active Word document. If MS Mail is not present on the user's
machine, the virus does not generate e-mail, but it still can be transmitted
by infected Word documents sent in any e-mail program.

Microsoft Office Group product manager Tom Williams noted that the virus does
not affect Microsoft Exchange or Word 97, which uses a different macro
language from Word 7.

Jimmy Kuo, director of antivirus research at McAfee Associates, said that
while he's seen an entire corporate network paralyzed by an e-mail generating
virus, ShareFun's threat has more to do with sending sensitive documents to
the wrong people.

"It's more the situation of confidential information and documents getting
out," Kuo said.

Williams said users can minimize the dangers of ShareFun and other viruses by
observing a few common-sense basics.

"The ways you need to protect yourself haven't changed," he said. "Be careful
when you open attachments--make sure you know whom it came from and why they
sent it. Use tools (available at Microsoft's site) to scan Word, and make sure
you install a National Computer Security Association-certified antivirus
application."



----------
From:   Parkinson's Information Exchange on behalf of Maggie Heeger
Sent:   Thursday, March 13, 1997 4:29 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: virus warning: Fwd: Read carefully (fwd)

Bill Rogers wrote:
>
>          A good reliable friend of mine sent this message to me today
>          March 13th so am sending it on to you to safeguard your
>          equipment just in case you get one of the messages.
>

(snipped the rest)

This may be a good reliable friend, but your friend was taken in by a
scam. There's no way to get a virus from email...it has to be an

------------------------------

Date:    Fri, 14 Mar 1997 03:22:04 -0500
From:    Charles Countryman <[log in to unmask]>
Subject: PWP Employment

I recognize that this statement has no practical value to those PWP who are
dealing with employment difficulties.  I know, because I've had a few
myself and I have helped other disabled workers.  But I cann't keep my MAC
still!

As a local labor union shop steward, I found the remarks from some at
management level to be just about what I would expect.  Actually when
managers talk about P&L statements and workers taking advantage, I wonder
if they seriously consider what side of the equation they really stand on.
I think that they are too quick in assuming their high and important
position (Despite what they may claim to be the "real world.")

I am very happy that things have generally improved in labor-management
relations since my late grandfather's days. I am also fully aware that
those things that help ordinary people deal with major difficulties in
life, such as medical insurance, Social Security, disability insurance, and
more recently the ADA, came about because ordinary people insisted on their
God given rights, not the virtues of management.  When my grandfather was
injured in an industrial accident in the mid 1920's, I understand that the
only thing available for him and his family was his fellow workers "passing
the hat."  I'm very thankful that people disabled before me and others
concerned about the humanity God has given us (including the many managers
who have more productive things to do than be mesmerized by P&L)  have
given me as a shop steward a wonderful law like the ADA.  A law very useful
in making life better for people and life more difficult for those
management types overly engrossed in profit and loss and who assume that
workers as a general rule are taking advantage.

                        Charley Countryman (still making life difficult for
some
                        managers at 46/6)   [log in to unmask]

------------------------------

Date:    Fri, 14 Mar 1997 04:33:41 -0500
From:    [log in to unmask]
Subject: (LONG) trouble getting approved for disability status  - help yhelp
         ayudar  me

This is a long post,  Unless it interests you, pass it by.  Sorry for the
length,   Thx, the Ratman

Tribe of Parkinsonians.... I am having a very difficult time with the SS
disability approval process.  I left my job last April, filled out the
appropriate Long Term Disability insurance carrier forms to my company's LTD
carrier's liking, had my neurologist sign off on them and got approved for
LTD.

After the 4th or 5th month the insurance company "encouraged" me to seek
disability status from Social Security so the govt would pick up part of the
costs.  Well I filled out the forms and then took all the info I had
submitted to the LTD carrier and cut and pasted it to fit the format the SS
board and our State's Dept of Econ Security wanted.  Then, I waited.
  Eventually, their reply came back stating my request had been denied. Talk
about giving water to a drowning man.  I felt abandoned; I felt like I was
rapidly losing control of my life.  At this point, the gist of their reply
seemed to hinge on the following mantra

>>>
we have reviewed your medical record and it shows you have received treatment
for your condition and that your condition does limit your ability to work.
It does show that you may no longer be capable of performing work such as you
have done in the past.  However, based on your age, education and past work
experience, we conclude that your are still able of performing other work
which requries less mental or physical effort.
<<<

Okay, round 2.  I hit up our own John "the scribe" Cottingham for some
archival information on what the govt is looking for.  To be able to outfight
your opponent in such verbal jungle warfare ... you have to think enemy,
 sleep enemy,  eat enemy,  walk enemy,  be enemy.  I tried to take the
information I provided previously and shape it more in the way that (I
thought) showed my limiting factors and problems caused by my  disease.  I
also asked my neurologist, a excellent and well respected doctor who holds a
position in the national NPF organization, to write a letter describing the
symptoms I had, the problems my Parkinson's caused me, why I was essentially
not able to go the distance anymore.  Granted, I have my good periods, but I
also have my bad periods and net/net the confusion and exhaustion I
experience make it too unpredictable and difficult for me to hold down a
regular job anymore..

Now, almost a year after I left work, my appeal comes back denied.  I am
between a rock and a hard place.  At the end of the year's time since I was
actively working, my company formally terminates me with all rights and
privileges thereto appertaining (in other words... take a walk) .  I become a
ward of their LTD carrier and am offered continuing health insurance if I pay
 the group rate myself... of course, all this is also contingent upon my
being approved for SS disability benefits.  If this approval is denied, I
have no idea what happens.

What am I doing wrong?  What is wrong with the system?  I thought the purpose
was to provide a safety net and protect the worker.  Instead I feel like
their goal is to humble and humiliate.  After being a computer systems
analyst for a number of years it now appears the govt's intent is for me to
rachet my income down to match my impaired and continually declining
abilities until some dismal level is reached at which  I am a drooling zombie
incapable of making change.  Then upon meeting their criteria I can be
cashiered out of the system at 60% of a drooling zombie's salary.  Well, as
the jazzman Les McCann sings "Compared to what?!?"  What the hell kind of a
system is this?

According to SS,  my next appeal is a court process.  I think I am now faced
with procuring the services of a Disability process consultant and/or a
Disability lawer (probably both).

My questions:
 1) have any of you out there had to go this route?
 2) what are the chances of success as such appeals escalate?  (ie. does it
become harder and harder to win based on their recognition that you have been
denied previously?)
 3) does anyone have any good and hopefully tested suggestions on how to make
this process work?

If you deem your information on the above topic and the topic itself worth
group bandwidth, then fire away.  Otherwise would those who think they can
help me please send their responses off line and directly to me?   I would
appreciate all candid remarks and suggestions you can make.  If due to
circumstances you wish your information or suggestions to remain private or
your identity anonymous I will gladly respect your wishes.  I realize that
while this is a subject of interest to almost all of us on this list it is
also a very sensitive issue.  I can still joke about it because I  usually
joke about anything whether that is a good course of action or not but time
is running out and I am in a big, big jam..

Thanks,
Don Anderson ([log in to unmask])

------------------------------

Date:    Fri, 14 Mar 1997 05:54:51 -0500
From:    Dale Severance join list <[log in to unmask]>
Subject: Re: Udall Bill: Thanks For Helping Convince Sen. D'Amato

Hi Bruce: I expect to attend his speach to the Syracuse Chamber of Commerce
which has now been rescheduled to March 26, 1997.

If as anticipated he has a question and answer period I will publically thank
him for his cosponsership on behalf of the estimated 108,000 New Yorkers with
PD.

Say Hello to Lupe and the rest of the Pan Handlers Committee.

Lost in the hinterlands and Miss NYCity.

Dale Severance
Syracuse, NY.
[log in to unmask] com.

------------------------------

Date:    Thu, 13 Mar 1997 15:36:28 -0500
From:    Joao Paulo Carvalho <[log in to unmask]>
Subject: Re: Can't keep eyes open

Direct Imagination wrote:
>
> Hi again.  My father has developed a problem with keeping his eyes open.
For
> He was having problems with hallucinations, so his his sinemat was cut back.
> He now has problems keeping his eyes open at times.  Is anyone familiar with
> this, and do they have any suggestions? Thanks.  Stepehn Hubbard
>
> Patient
> Ray (Father) Age 73, PD 15 years

Say,he takes what other meds beyond Sinomet ?

REgards,
--
   +----| Joao Paulo de Carvalho   |------ +
   |         [log in to unmask]     |
   +--------| Salvador-Bahia-Brazil |------+

------------------------------

Date:    Fri, 14 Mar 1997 07:06:21 -0500
From:    Cyril Gray <[log in to unmask]>
Subject: PENPALS VIRUS HOAX

Bill Rogers has posted a warning about PENPALS VIRUS. I am sure he meant no
harm and I do not want to detract from the importance of this Listserver by
getting a thread about this going but this is truly OLD NEWS and is a total
hoax. Spreading this is akin to shouting "FIRE" in a theatre. That's just
what is intended in the first place.

To reassure everyone who may now be concerned, I quote from:
http://ciac.llnl.gov/ciac/CIACHoaxes.html#

PENPAL GREETINGS! Warning Hoax

The PENPAL GREETINGS! Hoax shown below appears to be an attempt to kill an
e-mail chain letter by claiming that it is a self starting Trojan that
destroys your hard drive and then sends copies of itself to everyone whose
address in your mailbox. Reading an e-mail message does not run it nor does
it run any attachments, so this Trojan must be self starting. Aside from
the fact that a program cannot start itself, the Trojan would also have to
know about every different kind of e-mail program to be able to forward
copies of itself to other people. This warning is totally a hoax.

To satisfy yourself go to:http://ciac.llnl.gov/ciac/CIACHoaxes.html#deeyeneda
here is an excerpt:

PENPAL GREETINGS! Warning Hoax

The PENPAL GREETINGS! Hoax shown below appears to be an attempt to kill an
e-mail chain letter by claiming that it is a self starting Trojan that
destroys your hard drive and then sends copies of itself to everyone whose
address in your mailbox. Reading an e-mail message does not run it nor does
it run any attachments, so this Trojan must be self starting. Aside from
the fact that a program cannot start itself, the Trojan would also have to
know about every different kind of e-mail program to be able to forward
copies of itself to other people. This warning is totally a hoax.
If you receive an unvalidated warning, don't pass it to all your friends,
pass it to your computer security manager to validate first.

Sorry Bill, this had to be said!

C.W. Gray

------------------------------

Date:    Fri, 14 Mar 1997 07:11:32 -0500
From:    Susan Stessin <[log in to unmask]>
Subject: Request for info on hot feet

My dad keeps telling me that his feet are so hot. His Dr. ignored him when he
told him about it. He fears it is somethng serious and I wondered if anyone
has had that problem.
Thank
Sincercerily Susan
for Normam 72/12

------------------------------

Date:    Fri, 14 Mar 1997 07:35:54 -0500
From:    janet paterson <[log in to unmask]>
Subject: Brain News - Cell Programming Can Now Be Directed

hello all

here's some interesting news
more than interesting potential

i wonder if we'll look in the archives in five years
and laugh

your parkie sister in another island paradise

janet

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~=20
>      Cloning Expert Tells NIH That Cell Programming Can Now Be
>      Directed
>=20
>      WESTPORT, Mar 14 (Reuters) - Leading with a comment that
>      cloning research has been a "team game," Dr. Ian Wilmut of
>      The Roslin Institute in Edinburgh, Scotland, described for
>      attendees at an NIH seminar his technique of nuclear
>      transfer that produced Dolly, the cloned lamb.
>=20
>      Dr. Wilmut outlined the procedure of using an electric
>      current to fuse cells at specific stages in the cell cycle.
>      He said that the fusion is characterized by nuclear membrane
>      breakdown, condensation and then nuclear membrane
>      regeneration. Of 277 embryos created, only five survived. Of
>      these, three died within a few days of birth due to abnormal
>      development, one died of unknown causes and one produced
>      Dolly.
>=20
>      "The process is very inefficient," Dr. Wilmut acknowledged.
>      Either nuclear transfer or culture causes an increase in
>      birthweight, prolonged gestation, and an increase in
>      perinatal mortality that is not associated with either
>      malformations or abnormal development.
>=20
>      "We can reprogram the development of a cell," an act that
>      has broad biological and regulatory implications, Dr. Wilmut
>      noted. "We can take cells from a patient and cause
>      differentiation or undifferentiation and redirect them," Dr.
>      Wilmut said. He pointed out that his is an agriculturally
>      oriented institution, and his colleagues are considering
>      using his methods to create superior animals for
>      agricultural uses.
>=20
>      "This [technique] will provide the opportunity to
>      study...the mechanisms of aging...and diseases of the
>      mitochondria," Dr. Wilmut told the Bethesda, Maryland
>      gathering.
>=20
>      Meanwhile, the National Bioethics Advisory Commission,
>      chaired by Dr. Harold Shapiro, held a meeting yesterday at
>      the Watergate Hotel in Washington, D. C. This presidential
>      commission has prompted the development of the similarly
>      named American Bioethics Advisory Commission, which issued a
>      press release to coincide with the meeting. The American
>      Bioethics Advisory Commission is a group of scientists and
>      bioethicists who "...believe that the President's bioethics
>      panel is biased in favor of experimentation," according to a
>      PR Newswire report.
>=20
>      The American Bioethics Advisory Commission's chairman, Dr.
>      C. Ward Kischer advised caution in reaction to Dr. Wilmut's
>      cloning success. "The hard data must be examined very
>      carefully and the results must be repeatable...The 'success'
>      of one out of nearly 300 attempts is hardly the kind of
>      statistic that prompts an investment in repeatable
>      experiments," Dr. Kischer said.
>=20
>      In Bethesda, Dr. Wilmut echoed Dr. Kischer's words, saying
>      that he might have had very poor results with one success in
>      277, or he might have been extremely lucky--with the odds of
>      a success one in a million. Only further research will tell.
>=20
> Copyright =A9 1997 Reuters Limited.
http://www.reutershealth.com/news/docs/199703/19970314scd.html


[log in to unmask]

------------------------------

Date:    Fri, 14 Mar 1997 08:58:32 -0500
From:    Donovan White <[log in to unmask]>
Subject: PD, ALS and MSA

I haven't been able to find a lot of information that explains the
differences in early diagnosis of Parkinson's that distinguishes it from
things like ALS and MSA. Does anyone on this list have this sort of
information?

When I asked my mom's doctor about the possibility of her having MSA, I
think (if I remember this correctly) he said that her symptoms appearing on
only her left side helped him determine that she has PD.

I appreciate any information on this. Thanks again. Debbie White



[log in to unmask]

------------------------------

Date:    Fri, 14 Mar 1997 09:39:45 -0500
From:    Elizabeth Leslie <[log in to unmask]>
Subject: Re: Symmetrel/sex change/'improper' meds

Thanks to you all for responding on this.

Ken, full marks for lateral thinking.  But if ever I was faced with a
choice that made me emphatically opt for 'improper' medication this is it.
I did joke to Ernie recently that 'I need a wife,' but this is not quite
what I had in mind!  But it did make me chuckle.

Beth

>Beth, just tell him you demand a sex change operation, so you can get
>proper medicationI If he is working for an HMO and trying to save money
>by giving you cheaper meds, he'll have to realize the meds will cost his
>employers much less than the surgery! (Just kidding!)
>
>
>
>
>[OO] LOOKING FOR RADIOS!
>Ken Becker
>[log in to unmask]
>
>
>On Thu, 13 Mar 1997, Barbara Mallut wrote:
>
>> Beth... I was appalled to read that you're being  WITHHELD l-dopa!
>>(Sinemet or
>> the equivalent).  This seems like an issue of   _CONTROL_  to me, rather
than
>> the practice of a responsible and caring physician.
>>
>> Since PD is a disease which effects each individual is a somewhat different
>> manner from every other individual having the disease, what possible
>> difference could I take if you were  a male, head of household, working to
>> support a wife and kids, and going to lose your job because of the disease
>> making dramatic inroads into your life?!   The disease IS terrible, and
>>you DO
>> have it, and you're YOU... This is NOT a gender issue or an occupational
>> issue, and your physician MUST be appraised of that!!
>>
>> If the MD then won't prescribe what IS the drug of choice for most
>>people with
>> PD    then get another doctor!  Even an internist or family practitioner
....
>> heck, even a PEDIATRICIAN can prescribe you Sinemet!!! (or the equivalent)
>>
>> This is NOT a "gender-related" disease, its' a HUMAN-related disease.  Your
>> life IS your life.  You'll NEVER be that male your MD has declared you not
to
>> be.  You're going to be YOU for the rest of your life, and your physician
>> SHOULD be treating you with the most useful drugs for YOU... the person you
>> are, not this fantasy he THINKS should get this valuable drug!
>>
>> And Beth... don't you DARE trash your research project!  WHEN you're on the
>> right medication, and possibly also an anti-depressant,, you'll be raring
to
>> finish that research and to move on with your life.
>>
>> YOU GO GIRL!!
>>
>> Sending a buncha love your way....
>>
>> Barb Mallut
>> [log in to unmask]
>>
>>
>>
>>
>>
>> ----------
>> From:   Parkinson's Information Exchange on behalf of Elizabeth Leslie
>> Sent:   Wednesday, March 12, 1997 3:20 AM
>> To:     Multiple recipients of list PARKINSN
>> Subject:        Symmetrel
>>
>> I'm seeking a bit of guidance on this.  I've seen the neuro today.  He
>> agrees I need treatment.  He agrees l-dopa would make me fully functional.
>> He sent me away with a script for Symmetrel!  He told me it could take me 3
>> months to feel any benefit from it.  He did agree - a touch reluctantly,
>> perhaps even a little sheepishly - that if I were a guy with wife/family to
>> support and at risk of losing my job he would not withhold l-dopa.  (One
>> good thing tho' - I did find out from him how/where to get my Selegiline
>> cheaply.  That's a relief.)
>>
>> Guess what folks?  I'm not feeling so :)  Getting ready to trash my
research.
>>
>> I'd really like to hear from anyone who takes/has taken this med.  And any
>> other advice you care to fling my way will be welcome.  Off-list is fine.
>>
>> Thanks,
>>
>> Beth
>>

------------------------------

Date:    Fri, 14 Mar 1997 10:00:50 -0500
From:    Maureen Allen <[log in to unmask]>
Subject: Rates of illness in different populations

I am writing a grant to fund a project to teach newly diagnosed PWP and
their families about the illness using multimedia CD-ROM technology.  I
would like to ask a couple of questions.  I have also askedthe questions of
a support group I belong to.

1) What type of information do you think the new PWP needs to know?


2) What type of information do you think caregivers should know?


3)  Would you use a computer program that might have information about PD?


Some of the information I have read about PWP, gives statistics about how
many have the illness and information about gender but they don't discuss
the breakdown according to race.  I have read that it is not as common in
African-Americans and Asians.  Does anyone know the racial breakdown?

Thanks in advanced.

Maureen
Maureen Allen, RN-C MPH
Business Address:
Clinical Tools, Inc
5001 Baum Blvd Suite 720
Pittsburgh, PA  15213
Phone: 688-8970  Fax 688-9493
Email: [log in to unmask]

------------------------------

Date:    Fri, 14 Mar 1997 10:06:35 -0500
From:    Maggie Heeger <[log in to unmask]>
Subject: just learning

I've enjoyed lurking, reading and learning about PD. My mother-in-law is
76, and has had "something" wrong with her for about 3 years. Six months
ago she was diagnosed with PD. She doesn't have much of a tremor, but
she does fit many other of the symptoms. She has dyskenisia while
sleeping, sleeps practically round the clock, is severely depressed and
anxious, and is currently in the hospital with pneumonia.

She and my father-n-law are living in an area with no relatives or
friends nearby to help. Just recently Dad arranged with a church group
to have a nurse practitioner, a nurse's aide, and a physical therapist
come to the house to visit, each coming three times a week. That's
helped alittle, because now Mom has some contact with other people.

She refuses to become involved in any type of support group or even a
senior citizen's center. She just wants to stay home and have everyone
leave her alone. Dad complies with that request. (Their relationship has
been rocky, and he's glad to ignore her most of the day.)

Her medication consists solely of 3 Permax tablets daily.

I want to support them, obviously. But I also want to give them concrete
suggestions on how they can help Mom live her life to the fullest. Dad
isn't willing/able to be her advocate. He just coasts along with
whatever seems to be happening.

I'm welcome to any suggestions on any aspect of this situation.

By the way, we live 10 hours away from them, so it's extremely difficult
for us to drop in and visit. How can we help long-distance? It really
seems as if Mom is just waiting to die. When we call, she can only talk
for a few minutes, as it wears her out. She is either sleeping or lying
still with eyes closed much of the day...she shuts out anyone who tries
to talk with her or help.

This is so heart-breaking....

thanks, all.

Maggie Heeger
in northern Alabama

------------------------------

Date:    Fri, 14 Mar 1997 10:56:27 -0500
From:    Margaret Tuchman <[log in to unmask]>
Subject: Udall: General Plan & NJ Advocates

Thank you Jim Cordy and Bob Dolezal for you inspiring messages!

I suggest that we all follow the activity schedule suggested by Bob:
Beginning TODAY through 3/21: daily telephone calls and letters to Senators
and Representatives at their DC offices.
Call capitol switchboard toll free #: 800-962-3524 or 800-972-3524
Write: United States Senate, Washington, DC  20510
Write: United States House of Representatives, Washington, DC  20515

While you are talking to the DC office, get the phone number of the home
office and
call to schedule a meeting with the members during their break. Keep calling
and
insist on a meeting between 3/24 and 4/4.

We must also get this message out to those PWPs who are not on this listserv.
I am sure that many support groups are aware of the urgency for action, but
some may not be.

Search out groups and provide them with information. Call these national
PD organizations and ask for the group(s) operating in your area:
PDF - 800-457-6676, NPF - 800-327-4545,APDA Main #-800-223-2732,
APDA Young Parkinsonians - 800-223-9776.

There is a double tiered mailing planned for New Jersey. Advocates and
support groups
will be receiving a Strategy Planning Kit by snail-mail: List of NJ Congress
Members,
List of 104th Congress Co-sponsors, Table of research funding comparison
among diseases,
Sample letter format, PAN Cost of Parkinson's Disease Survey,etc.

Congress Members will be receiving a packet containing: a letter urging
their support,
List of 104th Congress Co-sponsors, Table of research funding comparison
among diseases,
Cost of Parkinson's Summary,etc

Call PAN for material you need to wage your campaign: 800-850-4726, or contact
[log in to unmask] or [log in to unmask] and we'll send you copies of what
we have.

If you are in NJ and have not been contacted yet, please email me or call me
at:
609-921-6258.

We are ready!!!
Margaret




Margaret Tuchman (55yrs, Dx 1980)- NJ-08540
[log in to unmask]

------------------------------

Date:    Fri, 14 Mar 1997 11:06:29 -0500
From:    Howard Harrrington <[log in to unmask]>
Subject: Introducing  myself

Hi all,         I want to introduce myself to everyone.  I have been on the
net for 2 1/2 years . Dale Severence a dynamic person introduced me to
listserv. It is great.

        My name is Howard Harrington, my friends call me Bud. I am 61 years
old and had PD for 6 years. AT age 50 My health feel apart. Up to thattime I
exercised every day watched my diet, and did everything I should do to
remain healthy. At 50 I had a severe heart attack while vacationing  in
Washington DC. 21 days in hospital and 14 days in ICU. This is when looking
back the first signs of PD appeared. Difficult buttoning my shirts and
drooling.I felt something else was wrong besides my heart but I couldn't put
my finger on it. Three years later I had to insist that the cardiologist to
do something. I was favoring my right side. He refferred me to a
neurologist. So with my heart medication an d my PD medication I was takeing
over 10 different medication.
        I also have Restless Leg Syndrom. I don't know if it is from
Parkinson or from medication. It is so bad I get only about 4 hr of sleep a
night. I get only exhaustion sleep.
        Another problem is creeping up. My feet have fallen apart. Besides
the bunion and caluses.There is a neurological problem. I cant move my toes.
Enough already
        Don't take me as a long winded verbouse person. I never talk about
myself. Today I hav e to let it all hang out. I am a reserved person,
married and togeth we have 27 y/o twins boy/girl. My wife is my care giver.A
grreat person . She is an  RN  but has retired so  that we can live a
quality life together.I can't drive so she is my chauffer too.

Thanks for reading,


Howard (Bud) Harrington   [log in to unmask]
Bud

------------------------------

Date:    Fri, 14 Mar 1997 10:07:06 -0500
From:    MR ROBERT A MARTONE <[log in to unmask]>
Subject: Udall  Re: WE HAVE A PLAN !

Jim and the Rest of the List,
Great post!  Here is what we are distributing next week through the
(Houston Area Parkinson Society) HAPS newsletter to our 1000 members.
It's a little different than yours because Joan Samuelson is still
talking to Senator Mc Cain and others about introduction on the 29th.
Either way we win so Ii am showing alternate dates for the Bills's
introduction.

HAPS  News Letter March 15
Udall Parkinson's Bill Alive and Well

The 105th Congress is in session and the new Parkinsons Research
Education and Assistance Act (Udall Parkinson's Bill) will be introduced
either April 9, or April 23.  While the 104th congress did not complete
the approval process for last years Udall Bill, it was approved
unanimously by the Senate as part of the NIH Reauthorization.
Unfortunately the House did not act on the bill so we must resubmit the
bill to the 105th congress.

Since our last report many positive things have been happening. We have
the beginnings of a National Parkinson's Coalition that includes the
APDA, NPF PDF, PI and PAN. Early meetings have served to identify
differences but have validated the importance of the Udall bill to the
PD community.

In the Senate, Senator Paul Wellstone (D) MN, and Senator John McCain (R
) Arizona have agreed to be principle Co-Sponsors. In the House
Congressman  Fred Upton (R ) and Henry Waxman (D) California have also
agreed to Co-Sponsor.

The bill will have all the key points that the last bill had and will
request $100 million.  You can help greatly by calling our Senator's and
Congressman and by asking them to support the Udall Parkinson's Disease
Bill.

A schedule of events for the next few months follows.

March 24 - April 4,  Congress will not be in session and members will be
at home in their district offices. This is an excellent time to call and
visit them. Let them know who you are and how much you care.

April 9, alternate  date for introduction of the Udall bill.

April 23, Muhammad Ali to testify before the Senate Appropriations
Committee - alternate date for Udall Bill Introduction. Expect national
media coverage.

April 29,  Udall Awards Dinner in Washington  honoring Congressman Fred
Upton (R ) Michigan and Senator Tom Harkin (D) Iowa for their support of
the Udall initiatives.

The PAN Forum is scheduled for June 9 -12, in Washington. Any one (From
Texas, Arkansas and Oklahoma) wishing to be an Advocate should contact
Bob Martone at 281-358-5168 and/or the Parkinson's Action Network at 1-
800-850-4726. The forum includes Parkinsonians and caregivers from all
over the country and provides in-depth training on how to be an advocate
for PD including scheduling visits with your representatives to discuss
the Udall bill while you are in Washington.
Bob Martone

-------- REPLY, Original message follows --------

> Date: Thursday, 13-Mar-97 04:21 PM
>
> From: [log in to unmask]       \ Internet:    ([log in to unmask])
> To:   Parkinsn Mail            \ Internet:    ([log in to unmask]
utoronto.ca)
>
> Subject: WE HAVE A PLAN !
>
> I'm joinning Bob Dolezal in presenting this plan of action( see
separate post).
>  The plan is the same, the appeal a little different.  I hope that one
of these
> appeals motivates everyone.  This plan had substantial input from Teri
Whitling
> and Bob Martone among many others.  After a long winter staring at the
specter
> of a year of lost opportunity (our failure to pass the Udall Bill), I
feel the
> excitement of spring and a new initiative building.  As the bulbs
begin to
> break their way out of their dormancy, I see my fellow advocates
beginning  to
> emerge.  Just as these bulbs will surely burst into the warm sunshine
of
> summer, I look forward to basking in the success of passing the Udall
Bill.
>
> HERE'S THE PLAN
>
> Now is the time.  Our leaders have positioned us such that victory is
ours
> for the taking. That victory is increased funding for Parkinson's
research (the
> Udall Bill).
> We now have a plan.
>
> 1) WRITE & CALL/VISIT IN DISTRICT - The last week in March and
> the first week in April  Congress is on recess.  Visit every
Congressman
> and Senator possible during that two week period and    politely
insist that
> they cosponsor the Udall Bill which will be introduced upon their
return.  Prior
>  to a visit or if you can't visit - write or call (800-962-3542 the
capitol
>  switchboard, just ask for your Congressman or Senator)  Calls and
letters are
>  not as effective as a visit but are the next best thing (on their own
) and
>  compliment a visit(demonstrating the visitor represents many more)
>
> 2) INTRODUCTION - The Udall Bill will be introduced by Senator McCain
and
> Congressman Upton on Apr. 9th. Equally vital to the ultimate success
is the
> support of their minority counterparts Senator Wellstone and
Congressman    Waxman
> 3) ALI AT APPROPRIATIONS - Two weeks later, on April 23rd, Muhammed
Ali will be  on Capitol Hill to testify before the House Appropriations
Committee.  We will
> recruit a group of advocates and go to Washington that week to contact
any and
> all of those who have not yet agreed to cosponsor.  Word of Ali's
presence on
> the Hill should maximize our presence and impact.
>
> 4) FINALE - On April 29, as the grand finale, PAN has its annual Udall
Awards
> dinner.  By that time we should have as cosponsors the majority of
both houses.
>
> We then will have given our political leaders (McCain, Wellstone,
Upton and
>> Waxman) a majority in both Houses  far earlier than last year and
Congress
> will  not be  adjourning early for a presidential election.  We will
also have
> given them  something almost as important -  a dramatic demonstration
of the unity and  resolve of the Parkinson's community.   A  message
that we will not be
> denied.
>
> My challenge is to come up with the words that will motivate people,
many
> who  may have never been  involved in politics or perhaps do not even
know who  their  Congressman is,  to summons up the nerve, resolve,
chutzpa, cojones (call  it what  you will), and  go see their
Congressman and Senators. There is simply no  substitute for seeing your
elected official in person.  If during that
> visit you convey  the misery brought about by this affliction and
establish that a cure or  new  effective treatment is close, then that
person must look you in the eyes  and either  say  "Yes, I will help" or
"No, I will condemn you to a life of disease and  suffering".  The
latter is extremely difficult for one human to say to
> another. If you  have Parkinson's and would like to do your part to
cure this hideous  disease, plan  on seeing your Congressman in person
during those two weeks. Call now as  you  may have to convince their
aides that you will see your elected official if  you have  to sit on
the door step.  Tenacity should not be a problem for those who  suffer
daily with this scourge. You cannot convey this emotion by phone or
letter.  You cannot convey this  emotion through an aide.  It takes a
personal visit and it works.   My wife and I have personally seen 23
elected officials and 19 have agreed to cosponsor.  Conversely  we have
spoken to 20 aides and only 10 of those elected officials have  agreed
to  cosponsor.    If you want to one day have the freedom of movement we
all use to take for granted, you simply must seize this opportunity.
>
> This is it folks.   We need to get this legislation passed now.  We
must
> demonstrate that the Parkinson's community has the resolve to demand
that
> we obtain the breakthrough that the neuroscientists tell us is so
tantalizingly    close.  We cannot keep coming back year after year with
the same message.      This is  the  year we must get it done.

> Jim Cordy
> Pittsburgh
> [log in to unmask]
-------- REPLY, End of original message --------


--
[log in to unmask]

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End of PARKINSN Digest - 13 Mar 1997 to 14 Mar 1997 - Special issue
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