Hi, Ray.

Re: longest survivor of PD.

My husband, David, has been ill with PD since AT LEAST 1967, and probably
even earlier.  When I met him 42 years ago, he'd already lost his sense of
smell.  2 years later, he became very inflexible (read "rigid") in his
attitudes, outlook, etc.  2 years after that, he exhibited his first
muscular symptom: cogwheeling of his shoulder.  2 years later, his right
side became very rigid, whereby he began dragging his right foot, and lost
the swing of his right arm as he walked.

David wasn't diagnosed with PD until about 15 years ago, but he's been
treated with sinemet et al for the past 35 years.  "Why are you giving him
these particular meds," I asked his original neuro, "when there's no
diagnosis for his condition?"   Answer: "Because that's what works."  When I
asked that same neuro what he thought David might have after rubberstamping
David's prescriptions for 20 years, he answered (This is burned on my
brain.), "Darned if I know.  It's not Parkinson's.  I've treated Parkinson's
for 25 years, and it's definitely not Parkinson's."

This has been a very long, arduous aventure.  David had DBS 4 1/2 years ago,
which is now not helping at all with his balance, but his dyskinesias have
(so far) completely disappeared.  His mental competence varies at times,
he's somewhat confused, his speech is significantly reduced (aided and
abetted by the DBS), his memory isn't great, and he needs a great deal of
help 24/7 due to the balance issues, esp. with daily needs.  But...he's
still truckin' along.  Other than the PD, he's the healthiest "sick person"
I've ever seen.

Bev
----- Original Message -----
From: "rayilynlee" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, December 31, 2006 12:13 PM
Subject: Re: Wish from Idelle at SCAN/Don


> Don,
>
> It is Idelle at SCAN, not me, who has not had a good day since 1978.  She
> has MS and was writing about Christmas and New Years wishes to people who
> are not going to get well.  In 1979 I had ovarian cancer so my last 27
> years
> have not been so great either (11 with PD).
>
> You are certainly the longest surviving person with PD I know of and are
> an
> inspiration to all of us on this List.
>
> I don't believe stem cells are going to help me, but see no good reason
> why
> science should be stopped.  I think someday they will help someone.
>
> Hoping to hear from you again next year.
> Ray.
>
>
>
> ----- Original Message -----
> From: "Don McKinley" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, December 30, 2006 9:27 AM
> Subject: Re: Wish from Idelle at SCAN
>
>
>> ----- Original Message -----
>> From: "rayilynlee" <[log in to unmask]>
>> To: <[log in to unmask]>
>> Sent: Friday, December 29, 2006 11:28 AM
>> Subject: Wish from Idelle at SCAN
>> RAYILYNLEE I DO NOT KNOW HOW TO ANSWER U AS I SAID I WILL BE 83 PWP 39
>> YEARS
>> I NEVER ASKED ANY 1 WHAT THEY BELIED U GOT 1 STEM CELL IT WONT HELP ME I
>> NEVER SAY THE MEDS I TAKE ALL I ASKED WS TO HAVE BELIE IN SOME TING THE
>> NEW
>> THING THAT IS HEADD FOR ME I WILL NEVER KNOW U SAY SINCE 1978 U NOT SAW A
>> GOOD DAY ME GOOD DAY IS TO SEE THE WORLD AGAIN ME I SAY HAVE HAVE THE
>> BEST
>> OF THE YEAR U CAN LOT LAUGH AT ME OTHER SAY U SAY FUNEST THING AND THE
>> BEST.
>> ALL I CAN TELL U HOPE TO C U ON LINE NEXT YEAR AT THIS TIME GOOD OR BAD
>> WE
>> A
>> LIVE SO TILL THEN IN JOY WHAT U LIVE GIVES   (flash)
>>
>>> SCAN UPDATES:
>>> - We are putting the finishing touches on StemBlog, the site to network
>>> advocacy groups. We have already signed up eight organizations, and will
>>> begin a campaign to enlist many more partners. Go to www.stemblog.net
>>> and
>>> take a peek. Want to suggest a group to become part of the network?
>>> Contact
>>> me at [log in to unmask] with their web address. If you are part
>>> of
>>> such a group, please contact me to ask any questions.
>>> - We have received two excellent nominations for SCAN's "Advocacy
>>> Champions
>>> of 2006". Please send the names to me of other individuals who have
>>> tirelessly served our cause during the past year.
>>> - We will be sending out the names of members of the House of
>>> Representatives and a sample letter to target for HR 810.
>>> - Please include SCAN in your end-of-year list of donations.
>>> Thank you.
>>>
>>> December 29, 2006
>>> Dear SCAN Members,
>>> We're all probably familiar with the dilemma of is it OK to say 'Merry
>>> Christmas' or should I be inclusive and just say 'Happy Holidays'?.
>>> Well,
>>> if
>>> you've figured out how you want to handle that one, don't relax just yet
>>> because I've got another one for you to chew on. Is it OK to wish me a
>>> "Happy and Healthy New Year" when I haven't had a healthy year since
>>> 1978,
>>> and don't think that the state of my health is going to dramatically
>>> improve
>>> in '07?
>>> The political correctness argument that is the source of the "Don't say
>>> "Christmas", say "Holidays" quarrel concerns the risk of seeming
>>> insensitive
>>> to differences when one communicates with someone, who, for example, is
>>> not
>>> a Christian. In a similar way, is it appropriate or considerate to wish
>>> me,
>>> or the millions of others with life-threatening diseases, a "Healthy New
>>> Year"? It's a lovely thought, but to smile and accept it graciously we
>>> are
>>> required to collude with either the outright denial of our condition or
>>> accept the vague idea that somehow, something magical might happen to
>>> make
>>> this wish come true.
>>> The truth is that I was pretty resigned to being a good sport and to
>>> keep
>>> quiet during all the years when there wasn't much hope of a treatment or
>>> cure in the cards. But now, when stem cell research has put many of the
>>> key
>>> puzzles of basic science on the working agenda instead of "for dreamers
>>> only" I find that passivity isn't so comfortable anymore.
>>> I do understand that the wish is well-intentioned, but as a
>>> non-Christian
>>> I
>>> often feel uneasy accepting Christmas wishes; as a person with multiple
>>> sclerosis, I appreciate the thought of a healthy year, but the wish
>>> feels
>>> hollow, misplaced. I'd prefer that the well-wishers think more carefully
>>> about what it's like to live with a serious illness, every day, and to
>>> have
>>> to stand by and watch while politicians make decisions that affects the
>>> funding and thus the time frame of treatments, even cures.
>>> So what's the better choice?
>>> - Instead of sending me a card, donate the cost and the postage to
>>> research.
>>> - Ask me how you can help.
>>> - Be informed about the laws in your state that support research or
>>> limit
>>> it.
>>> - Write letters to Congress when asked.
>>> - Get involved: exchange empty wishes for targeted advocacy.
>>> -  Don't ask me to pretend that I'm just like you, when I'm not.
>>> And by the way, here is my number one wish for '07:
>>> I wish that everyone with an illness that could be helped by stem cell
>>> research finds a way to connect with the rest of the 100 million
>>> potential
>>> beneficiaries and that together we create a force to be reckoned with.
>>> Do you think this can be done? Let me know.
>>> Idelle Datlof
>>> Executive Director
>>> Stem Cell Action Network
>>>
>>> ----------------------------------------------------------------------
>>> To sign-off Parkinsn send a message to:
>>> mailto:[log in to unmask]
>>> In the body of the message put: signoff parkinsn
>>
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to:
>> mailto:[log in to unmask]
>> In the body of the message put: signoff parkinsn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn