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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