Peggy

Looking forward to your article.  Thanks for all you do.

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From: "Peggy Willocks" <[log in to unmask]>
Sent: Thursday, October 21, 2010 3:33 AM
To: <[log in to unmask]>
Subject: Re: Pain and Parkinson's

> Subject: Re: Pain and Parkinson's
> Ray
> You are my best example that I often give when speaking  of someone who is
> tenacious.  You never give up, and you are a model advocate.  Thanks for
> your input.
>
> When (IF) I get the article finished, I will share it here.
>
> Peggy
>
> -----Original Message-----
> From: Parkinson's Information Exchange Network
> [mailto:[log in to unmask]] On Behalf Of Rayilyn Brown
> Sent: Wednesday, October 20, 2010 1:34 PM
> To: [log in to unmask]
> Subject: Pain and Parkinson's
>
> This is in response to Peggy's call for our experiences of pain.
>
> I have found the pain of Parkinson's to defy description; it is nothing 
> like
> a migraine headache, but just as bad.
>
> I have pain in my body when I get up, stand or "walk" and it is not 
> located
> in one spot but moves around.  The voice situation is my worst and so hard
> to describe.  Strangulation is the closest I can get.  People freak out,
> think I am angry and keep asking me questions, calling me on the phone 
> even
> though I have tried to get some understanding.  And I haven't touched on 
> the
> pain of not being able to communicate.
>
> How to describe not being able to move, or tremor??  I can't.   Dystonia 
> has
> reshaped my toes and will break them.   I have pain in my hands and 
> fingers
> when I try to write before I can't write at all.
>
> It is not  like well-known experiences of pain.  Because I am not 
> screaming
> bloody murder and don't look sick people tend to think I can "rest up or
> refresh" myself.    Meds don't help.
>
> When I had ovarian cancer I suffered from chemo, not the disease and there
> was an end to it.  This disease NEVER lets you forget.  I don't think the
> usual pain scales apply here.
>
> Ray
> Rayilyn Brown
> Past Director AZNPF
> Arizona Chapter National Parkinson Foundation
>
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