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Reason I'm writing is just saw Neurologist today. Several things...he has a U-Step walker which is a God-send as it's so much more stable than most but because of PD he pushes it against the brakes until falling. He also takes Carbo-levo 50/200 ER about 5x/day. A long time ago a Neuro told me they know when they need medication and to abide by their feelings..really hard time when in hospital....they DO NOT understand need, timing, or frequency.
He is now exhibiting some dementia....Smartest man I've ever known (& grad. engineer) now has problems operating TV remote. A computer pioneer cannot understand how to access programs. At 3AM thinks it's afternoon. Yet he can mentor a young man's business and has made it grow 50% over the last year!
I asked DR re: Lewy bodies and he said NO...Lewy bodies come on much sooner in PD...not after 25 years...but dementia does occur.
We do try to find ways to slow down her Parkinson condition. We take her for at least an hour walk a day. We make sure she stands up every half and hour. We do exercise (stretching hands and legs) with her every 2 hours. We rub her foot with vaseline and conduct foot massage every night. (This can be difficult because of minor pain and we need to skip it whenever she screams). We massage her arms whenever we sit and talk to her. I do not know whether all these efforts help but she can still pick up chopsticks although her hands shakes crazily. We encourage her to eat on her own and clean up the mess later.
Bear in mind all these takes time and very often there are resistance from the patient. As caregiver, we need to have a lot of patience and keep on reminding ourselves that the patient does not purposely make our job more difficult. Of course, frustration will kick in sometimes. Make sure you can find a way to release your frustration. My way is to open up a hymn book and sing a song.
There is one disease (named "LBD" for Lewy Body Dementia) which can combine the following :
- LBD and Alzheimer,
- LBD and Parkinson,
- LBA and Alzheimer & Parkinson.
A neurologist will ask many questions in order to find out what is going on.
It is important to get the proper diagnosis as the treatment can be very different from one disease to the other and even be harmfull if not the right one.
"There is evidence from uncontrolled clinical trials and studies in animal models that the ketogenic diet can provide symptomatic and disease-modifying activity in a broad range of neurodegenerative disorders including Alzheimer’s disease and Parkinson’s disease, and may also be protective in traumatic brain injury and stroke." Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2367001/
The ketogenic diet is high fat, low carb, and moderate (meaning on the low side) protein. You can find a lot of information about it on YouTube and other web sources. Hopefully you can find a health care provider who can think outside the box Big Pharma puts most of them in.