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post #1 of 2 (permalink) Old 11-26-2016, 11:00 AM Thread Starter
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Q for Texas Tom or anyone else

You said in earlier post that you have Parkinson's and on meds. I have Dementia with Lewy Bodies and early onset Alzheimer's, but the DLB is primary. With this, the dementia stuff starts first, then later the Parkinson's stuff starts rolling into the picture. I can really appreciate your problems with remembering commands. Heck, I can't remember anything when it comes time to give Doc a command, and I frequently go down about 5 or 6 before I hit the one I'm looking for. I even call him by the wrong name a lot. Anyway, the reason I'm posting this is to ask about the Parkinson's stuff, like blank face, arms not swinging, shuffling when walking, tripping, and balance stuff. I have a little bit of all of these, but some could come from Alzheimer's. I don't take Parkinson's meds, but I do take dementia meds. Ok, when you walk and your arms don't swing, can you make them swing if you think about it. Same for shuffling. I just curious if these Parkinson things are involuntary, but can be stopped if I think about it, or what. They want to hold off on the Parkinson's meds for as long as possible for various reasons. So I don't want to complain about Parkinson-like stuff unless it is the real deal. I have not frozen yet, but I do have the flat face blank look almost all the time, but I can force myself to not have it for short periods. Maybe no answers to any of this, but I thought I would ask anyway. Thanks. Bill.
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post #2 of 2 (permalink) Old 02-03-2017, 06:22 PM
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Quote:
Originally Posted by BillBRNC View Post
You said in earlier post that you have Parkinson's and on meds. I have Dementia with Lewy Bodies and early onset Alzheimer's, but the DLB is primary. With this, the dementia stuff starts first, then later the Parkinson's stuff starts rolling into the picture. I can really appreciate your problems with remembering commands. Heck, I can't remember anything when it comes time to give Doc a command, and I frequently go down about 5 or 6 before I hit the one I'm looking for. I even call him by the wrong name a lot. Anyway, the reason I'm posting this is to ask about the Parkinson's stuff, like blank face, arms not swinging, shuffling when walking, tripping, and balance stuff. I have a little bit of all of these, but some could come from Alzheimer's. I don't take Parkinson's meds, but I do take dementia meds. Ok, when you walk and your arms don't swing, can you make them swing if you think about it. Same for shuffling. I just curious if these Parkinson things are involuntary, but can be stopped if I think about it, or what. They want to hold off on the Parkinson's meds for as long as possible for various reasons. So I don't want to complain about Parkinson-like stuff unless it is the real deal. I have not frozen yet, but I do have the flat face blank look almost all the time, but I can force myself to not have it for short periods. Maybe no answers to any of this, but I thought I would ask anyway. Thanks. Bill.
Everything you mention is common to Parkinson's.

I was doing great on medication, but got to the point of needing meds every two hours. So I was off having DBS (Deep Brain Stimulation). Doing much better, was able to reduce meds to smaller dose every four hours.

I still need to keep a quaterbacks "cheat sheet" on my fore arm for commands. Other day I had SD jump up with a "UP" command, but for "OFF" I had been using "DOWN" Yep, same word when I want her on the floor. Just need to remember each command should have a unique word.
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