My mother started symptoms about 15 years ago. Falling over, loosing balance, difficulty walking etc. did all tests, no stroke, no Parkinson's (at that stage) etc. started with walking stick, then frame, wheelchair to go out and eventually totally wheelchair bound (about 7 years now). Enjoyed using iPad for many years but has now deteriorated and all body muscles do not function normally. Last few years told us was a Parkinsonian syndrome and possible CBD. Recently saying MSA. Has many of MSA symptoms - can't cry tears, aspirated regularly, can't breath when lying flat, constipation, etc.
today she is in an aged care facility with very limited speech, using full hoist to move on/off bed. Still using standing lifter for wheelchair transfer but less and less. All liquids thickened, meals minced, and very little ability to communicate. Her head/neck is locked at an angle downwards and her hands are knotted closed. No control over hand, legs, head, eyes. Very sad to watch her body waste like this.
She is only 77 so not old. Been pushing her all the years with exercise programmes and various rehab type therapies that could find. Had to deal with usual pressure sores and problems with skin on skin irritations.
Current meds include morphine for pain/discomfort, laxatives and Panadol, Baclofen, gabapentin , orlanzapine. Trying to just keep her comfortable and minimise spasms or cramps that she might have.
she has very limited speech and when she talks, it's barely audible. Been singing with her which she seems to enjoy and is able blurt out a few words. Mentally recognises everyone and knows what's going on - a real prisoner in her body. Very depressed, and understandable.
Thanks Ziva for sharing your story. My Dad 84 is very close to the conditions your mum has. It's so sad :(