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Heidigreene Asked December 2012

The doctors changed my FILs diagnosis from Parkinson's to sever brain atrophy. What should I expect?

My FIL's diagnosis has been changed. He went from a Parkinson's diagnosis to severe brain atrophy. His damaged cells, tissue death and shrinkage is much more advanced than that of an average 79 year old man. The cell and tissue damage is on both sides of his head which is causing the dementia (both long and short term memory issues). He also has severe loss on the top part of his brain which is the loss of motor skills, speaking, and eating, walking and balance (parkinism). His abilities cognitively and motor are inconsistent from day to day. Some days he's very fluid and others not so much. The motor skills are pretty consistently unstable. My question is has anyone else out there experienced this in caregiving? I have done some research on Internet but really cannot see what the future might hold and how this may progress. They are going to put him on a medicine which the say might slow down the process (a drug like aricept but not aricept). He is already on namenda and they are taking him off a couple other drugs which may effect his abilities adversely (primodone and Wellbutrin). I just want to be informed what I may expect (with the full knowledge it varies from person to person). Thank you!

EXPERT Carol Bradley Bursack, CDSGF Dec 2012
I can't answer this question from experience as to severe brain atrophy, however I wanted to give you my condolences and relate my experience.
My dad went into surgery clear headed and came out with severe dementia. It was not Alzheimer's, no was it like any other dementia I've read about. So, I do relate to your feeling that you don't know what to expect.
All I can say is that we went day by day, trying to make him as content as possible. I was using validation very early on because to me that was all that made sense. Basically, I entered his world the best I could. There were some very rough times. Like your father-in-law, Dad had moments of clarity as well as some good days and many very difficult ones. But we all gave him love and attention and just hung on. He lived like this for ten years.
I hope that doctors can give you some idea of what to expect, however, as you mentioned already, each day will be different. Please stay tuned into this forum, not so much for specific information, but for support. We've all been through a lot.
Take care,
Carol

5948rm Dec 2012
Heidi,my wife started with a fall 7 years ago and was diag,ed with progressive supernuclear palsy 4 years ago ,an illness that can last from 3 to 20 years after diag.she has all the symptoms you describe and would be confined to bed if I as her only caregiver did not get her around,in your case if you are the smaller of the 2 you hopefully have help...have a look at the CURE PSP site as it may offer some help,I will say that all conditions are diffrent in ways but progressive is likely a probable outlook,you need a close friend to support you because this situation is as hard on you,I wish I could offer a solution,prayers will help,DO NOT LOOSE hope and live one hour at a time..

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karenmain3 Jan 2013
go to the website earthclinic and read some of the articles there. Also go to google and type in edgar cayce + dementia you will find a lot of useful information. Good Luck and god bless.

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