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My best friend was diagnosed with Parkinsonism for several years, and L-Dopa did not help. Then they finally figured out what was really wrong: multiple sclerosis. Her father has it, and now she can see exactly what's going to happen.
My spouse has Parkinsons. Taking several medications to keep it in check, and they've been working nicely for the past eight years, plus the neurologist is doing a long-term study of Parkinsons symptoms treatments,
I keep up with developments at www.parkinson.org but otherwise have little contact with other Parkinsons or Parkinsonism caregivers.
My 79-year old neighbor has been on a medication for 3 years to delay its progression. She does not need any walking aids nor does she have a stairlift. She has had one fall. She and her husband are very in tune with managing their life to stay mentally and physically active, eat a healthy diet, and supplementing their diet. They're big on maintaining a schedule of activities so they do certain things inside or out in public at certain times on certain days. The Michael J. Fox foundation often has very good articles.
My companion was diagnosed with parkinsonian's. I didn't realize it was rare, I just wanted us to go to the MD and have a specific diagnosis and that is what they told us. I am no expert and I have not done any extensive reading on it. Caregiving is a special calling and not many people are up to The physical and emotional demands of caring for somebody. Luckily I was about 100 pounds heavier than my companion and I could pick him up with no effort. Which really helped later on in life as his health deteriorated.
My friends husband is using boxing therapy. Not sure what medication he takes.
My husband has Parkinson's which he blames on being exposed to Agent Orange during Nam, but on Guam and Military is denying all claims.
That "dopa" meds help with this shaking, but his walking and coordination is worsening lately. He was given a very expensive new medication which only caused him to get dizzy and fall down. I am 5'1" and 100 lbs. and he is 6'1" and 225 lbs. Very difficult me for lift him up off the floor.
We have heard about that boxing therapy and he wants to check that out. If nothing else, it would provide group support for him being around other people with Parkinson's.
Parkinsonism can be caused by a variety of factors. It is what they call anything that mimics Parkinson's but isn't it.
My husband had Parkinson's and Lewy Body Dementia. That was rough. He lived for 10 years after being diagnosed even though the prognosis for LBD is usually shorter. I kept him at home the entire time even though the VA would have taken him in their nursing home free of charge because it was considered "service-connected". Jo48, if they were using Agent orange on Guam then the VA should cover your husband's medical needs. Try it again.
Nowadays I volunteer working with Parkinson's patients at a boxing program called "Rock Steady". The people who belong to this group absolutely love it and they all look forward to it. It has created such a bond between the members. In a situation like that it is great to have some friends who are going through the same thing you are.
My brother was diagnosed as having Parkinsonian, but after he entered a nursing home (where he has been for 7 months) he was diagnosed as having Parkinson's instead.
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