Parkinson's: What tips do you have for caregivers?

@brumarle1

what is I-Dopa

This may not help very much, but the hard truth is that Parkinson's is difficiult to diagnose for 2 reasons: (1) There is no 'gold standard" definitive test for it, unlilke cancer. I have seen a couple of references to some tests that may be definitive but I've not encountered them in my 3-yearj-long quest what finally got me a diagnosis and therefore got me meratment. (2) There are several diseases that mimic Parkinson's. The reason a doctor may be reluctant to declare it Parkinson's is that if he's wrong, and starts the treatment for Parkinson's and it turns out that it was one of the other diseaes that mimic Parkingson's, then he'll give you the wrong treatment. Some of these mimicking diseases can actually be cured, but in any case, a wrong diagnosis gets you the wrong treatment. Another problem is that there's a veritable smorgas board of symptoms for Parkinson's and almost everybody has their own special set of symptoms. Then ther are folks like me, who had only 1 obvious symptom - I just kept getting more and more profoundly fatigued. I had no tremors nor did I haave any obvious symptoms that would make it clear that it absolutelly was Parkinson's After spseding 100 days in the hospppital, going through rigorous neurological exams at 3 different hospitals, I finally got a diagnosis, but it was only because, after the 3rd try, when my doctors still couldn't declare a diagnosis, one doctor tried one more last-ditch test -- he just gave me some l-dopa and watchd what happened. I was previously bedrdden and an hour ater l a single-dopa pill I could walk to the barhroom on my own, sit down, stand up, do things as if I had gon to a revival of faith healers. I wasn't healed but I certainly am tons better. Ican go out alone to walk to the pharmacy or grov=cery store 2 blocks from my house. So, the experience you're having with your husband IS grueling, heart-breaking, and frustrating, and you are having a rational response to the reality of how horribly difficult this can be.I can understand the doctor's reluctance to give you an exact time frame for how ,much longer your husband would live.But it does sound like you have not gotten the optimal support your husband's siuation warrants.Has anyone given him a regimine of l-dopaa? You may want to see a neurologisst outside of the VA (particularly given what is going on in the US at the moment, ) But if all they did was shru;ng their shoulders and send him home, they haven't really addressed his treatment very well, it seems to me. If no one has put him on a regimine of l -dopa to se if his PD can be managed a bit better than it iasa, I f it were me, I'd tr to find a neurologist who would at least doit wo get a feel for whether this could help. It helped me enormously. If I hadn't gotten a diagnosis when aai did, I would not be alive now. Instead, while I don't have some of my faculties, I am semi inedpendent, I have good days, and I am 1,000 times better than I was = just a blob in a bed, waiting to die. There is some reason for hope, if you can find a doctor to try it.