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Peggy Looking forward to your article. Thanks for all you do. -------------------------------------------------- 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 > > ---------------------------------------------------------------------- > 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