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Kathleen's #1 is especially important. I know certain friends don't really
understand what it is like, for example, to lose one's fine motor skills
as I look OK. People tell me I look "good"!! Unless you're shaking with
tremors or twitching from dyskinesia people think you are OK.
I can't make people understand how painful it is to strangle when I speak.
Or that I can't fine-tune or modulate my voice. They think I'm mad when I
raise it.
When trying to sign my Visa receipt for nails manicure and pedicure, the
woman ordered "just press down harder on the pen". or "Just relax" to my
dystonia-ridden hands.
It is so frustrating and fatiguing.
Ray
Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
[log in to unmask]
--------------------------------------------------
From: "Kathleen Cochran" <[log in to unmask]>
Sent: Tuesday, January 13, 2009 10:03 AM
To: <[log in to unmask]>
Subject: Re: Time to make some noise!
> RE numbers: the number I always hear is a million in the USA. Does anyone
> know where this comes from and whether it is credible?
>
> Re diagnosis: I don't know if this article was posted on the listserv, so
> excuse me if it's already made the rounds.. One of the authors is my
> neuro.
> I donated blood for the study. :-)
>
> http://www.medscape.com/viewarticle/574010_4
>
> Possibe items for the wish list:
>
> 1. How about promoting awareness and understanding of the disease and its
> impact? Most people think that just movement is affected.
>
> 2. Better understanding of how exercise and sensory stimulation influence
> the disease?
>
> 3. Better assistive devices? The classic cane is just not very helpful,
> IMHO.
>
> 4. A thorough investigation of what *really* happened with Amgen and GDNF!
>
>
>
>
> 2009/1/11 Peggy Willocks <[log in to unmask]>
>
>> I'm posting this in several forums and here for feedback.
>>
>> I love David Letterman's Top 10 list, which can be hilarious. But I want
>> to
>> talk to you about a few serious topics relevant to Parkinson's disease.
>> Visit Faster Cures website and their Top 10 "wants" for this year
>> www.fastercures.org . Faster Cures was established by the Milkin
>> Foundation
>> after Mike Milkin survived a bout with cancer. Now the philanthropic
>> Milkins
>> are putting a bundle into helping all diseases find faster cures. And
>> they
>> aren't alone. The Grove Foundation (Andy Grove - former CEO of Intel who
>> also has PD) is uncovering every shell they can too solve curing or at
>> least
>> better treatment of PD than a 40-year-old drug. And look at the Fox
>> Foundation; Mike's org has raised upwards of $132 million in helping find
>> a
>> cure.
>>
>> Everybody wanted "change," and believe you me - it's coming! I feel for
>> the
>> Obama administration.. One can only imagine a different political party
>> going into office after 8 years; there will be so many hands out asking
>> for
>> help that some will have to go home totally empty. and it's going to be
>> up
>> to us (grassroots) to get their attention. So this thread is to
>> brainstorm
>> what our Top 10 list should be.
>>
>> TOP 10 LIST FOR THE PARKINSON'S COMMUNITY
>>
>> 1. FIND OUT HOW MANY PEOPLE HAVE PD!
>> I have volunteered with PAN for 8 years (Parkinson's Action Network), and
>> each year at teir forum we go through 2-3 days of "training" and research
>> updates, then visit our legislators on Capitol Hill too tell our story.
>> Every time somebody asks me, "How many people have Parkinson's in
>> Tennessee?" And every time I have to answer, "er . . . um . . . I don't
>> know." Enough said!
>>
>> 2. WE NEED A TEST FOR DIAGNOSING PARKINSON'S !
>> Not only are we confused as to how many have PD, but we aren't really
>> sure
>> if those diagnosed really have PD! - we're trying to cure a disease
>> diagnosed purely by symptoms. And on top of that - our clinical trials
>> are
>> based on "observed symptoms." Who's to say that a number of people out
>> there
>> taking Sinemet for years were just shaking from anxiety on initial
>> diagnosis
>> and the rest of their symptoms are as a result of the meds. There's
>> something wrong with this picture.
>>
>> 3. WE NEED __________________?
>> aha! I'm turning it over to you for a few thoughts.
>>
>> Please join in this discussion
>>
>> Peg
>>
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to: mailto:
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>> In the body of the message put: signoff parkinsn
>>
>
> ----------------------------------------------------------------------
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1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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