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Hi Scott You are the first person I have noticed mention the "Gumby pose". Perfect...... description. Just after I was dx.(4 yrs.ago) once in a while my left hand would be raised when I was doing something like putting on my running shoes, Stephen, my former husband would ask, "what's up with that"?. I didn't know. I knew it was pd related, but it seemed an odd thing to be doing. I never thought to ask anyone else with pd if they had experienced the same thing. Quite frankly, I didn't know anyone with pd. It blew me away when I read your post. You forget these things. Scott you seem naturally funny and your optimism shines through. That is the best. I think I am doing well, well enough that Stephen has said, "I never thought you had pd". I guess I thought that was a good sign and I certainly wasn't out to prove I did. I had questions myself. When he gets the "Gumby pose" email from me, it will crack him up. I have a Support Group ready to happen. I'm the only member so far. The professionals in town have used my resource materials supplied for Support Groups by the B.C.Parkinson's Disease Association. And thank god for that, as they keep sending me these amazing video's on all aspects of Parkinson's Disease. In small towns people with any kind of disease tend to be self resilient and keep to themselves. Last year I put a notice up at the chiropractors office and pharmacists with my picture on it no less. That was out there for me. Doing an article for the newspaper is next. I am kinda moseying along with this pd, learning as I go along instead of full-tilt boogie. Still working full-time with thoughts of retiring next year while I'm young enough to enjoy it. P.D.makes you pay attention. Bonnie ----- Original Message ----- From: "Scott Burnett" <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, March 10, 2002 11:13 AM Subject: FIRST TIME USER > My name is Scott Burnett. I am 44 years old and was diagnosed with PD > at the age of 40. This was after the usual MRI's, bone scans, etc. > ruling out MS, Ankylosing Spondelitus (I had a marker in a blood test > that made this a possibility,) and other equally scary diseases. To > make a long story short, I'm now diagnosed with young onset PD, and I'm > taking 4 tablets of Carbidopa25/Levadopa 100 CR, 3 mg of Requip, 5 mg of > Selegiline and 800 IU of Vitamen E. > > I have some questions that I'm hoping to find out answers to... I > know that each PWP is different and their case progresses on its' own > timetable, but generally, > 1. At what dosage does the Carbidopa/Levadopa side effects outweigh the > benefits? > 2. How long do people work after their initial diagnosis? > 3. I have several odd movements going on: rocking from foot to foot, > clenching/curling my toes while standing, clenching my teeth, and > catching myself with my left hand raised (my wife calls this my "Gumby > pose.) Are these examples of Dyskinesia or side effects of the > medication? > 4. Looking toward the future, how hard is it to get the California > State Teachers Retirement System (CalSTRS) to okay disability benefits? > > I'm also trying to start a young onset Parkinsons support group > here in Stockton, California. I'll be distributing flyers to my > Neurologist this week, and I'm hopeful he'll be willing to pass them on > to his patients. Any other ideas on how I can get the word out about > the group? > > ---------------------------------------------------------------------- > 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