What can I expect if my husband actually has Parkinson's Disease?
Last July, my husband was diagnosed with Mild Cognitive Impairment. He has not wanted to do any other testing to determine if it is dementia. To date, there has been no other definitive diagnosis. The neurologist checked his hands to see if they were shaking. At the first appointment, they were. At the second one, they weren't. I know that possibly means Parkinson's Disease. I am leaning toward Parkinson's with MCI.
What I have seen is that he has (VERY) short-term memory issues, and cannot make decisions. Because we are looking to move to another state, I have asked him to go through his clothes and get rid of what he doesn't wear or want. I have also asked him to go through his files and shred things we no longer need (like old bank records). He was not able to do either.
He has had short-term memory issues for a several years (well before his diagnosis). He started to notice it February a year ago. He is definitely aware of everything that is going on. He is getting pretty frustrated, almost to the point of tears (fearing the future). He knows that means the burden is on me. I do feel I have to do most things now. Right now, he can still take care of himself and drive (and has not gotten lost).
I lean toward Parkinson's because his hands sometimes shake. He writes himself notes on small pieces of paper, with very small print (that I can hardly read!). What I noticed recently is that his signature is very shaky. That is very unusual.
Has anyone experienced these symptoms with their loved ones? What does this sound like? What can I expect? Do the symptoms come and go, like anything else?
My husband was prescribed Aricept. I don't see where it has helped. The neurologist said it was a 50/50 chance that it would. We have an appointment with her in a few weeks.
There are pens you can buy on Amazon, they are about an inch and a half or two inches in diameter, that helps with the writing.
Look for utinsils with a larger handle to grip. As the disease progresses, it helps. For hot drinks, I have stainless steel wine tumblers with a lid and a straw fits into the drink hole. I have the Ello brand now which are the best I have bought.
Take out all mats or rugs, they are a fall hazard. I have wood floors so grippy socks work good. A OT or PT can come and do an assessment. They can also see if he needs a walker just in case and set up an exercise program with small weights.
As the disease progresses, the accusations, paranoia and hallucinations can be taxing. Seek therapy if you need it. There will be times the anger or frustration will be leveled at you. Make sure paperwork like POA is in place because as they fight to keep indendence, it gets harder to get cooperation.
It also gets to the point, I do not know the words to describe it but when they have to go, they just go. When the accidents start, encourage Depends and figure out furniture placement closer to a bathroom or commode. Keep gloves on hand. I looked at the store the other day, they gloves I bought pre-Covid for $14 are now $39.
There is much more but do not want to ramble if this is not the info you want.
A DVD, plus online or streaming (I don't recall which) classes are available for use at home. I've watched a few documentaries on this movement, and am REALLY impressed with the adaptation of professional dance to skill and movement limitations.
https://danceforparkinsons.org/
Watch the video on the left hand side of the home page; folks are standing, seated, and moving gracefully with balletic based adaptations. To me this is a great way to exercise, with others in similar situations, seated, and with professionals leading the group.
I don't know if there are specific exercises for hands beyond the graceful positions of ballet, but an occupational therapist could probably address this issue better than I.
I can understand how that could happen when being asked to sort out data and clothes - that's just too much. Compress and narrow decision making to between 2 choices - A or B. And don't create any pressure. Approach it as something you were considering, A or B, and ask if he has an opinion, but avoid putting him in a situation of decision making. To me, this is critical.
Also investigate and ask the neurologist to evaluate essential tremors. A neurologist which we thought was good, and thorough, D'x'ed my father with PD. Eventually a successor took over the practice, evaluated, and said my father did NOT have PD. I can't remember if essential tremors was a DX, but Dad definitely did not have PD.
I think something else has to be considered as a factor for good mental functioning: it's the turmoil and strife that's affected the US for the last several years, as well as the pandemic and everything it entails. We're living in unprecedented challenging times.
I've found myself facing difficulty with clear thinking (especially after listening to current news and political "assessments"), and sometimes an unsteady right hand, which I realized was caused by journaling in a spiral bound book with huge metal rings holding the book together. The rings forced the right side of my hand upward, which created the unsteadiness. But until I realized that, I too was worried about PD.