I feel for you both, although if your husband is like me, it will be worse for you as it is for my wife as you can see what has happened to your other half.
The brain is a very complex thing and to think scientist know more about the space and how the big bang happened than the very best neurologist know about how the brain works and how the symbiont microorganisms can effect how it works, so although its frustrating, unless its smacking them in the face, its very difficult for them to figure out what’s going on with todays technology.
Myself, I’ve seen my new specialist and he although doesn’t think its Parkinsons (which I’m grateful), he has indicated that I could be in the very early symptoms or that I was on a very good day (which I was) and cannot rule it out either. It doesn’t help when you also forget to tell the specialist some of the symptoms either like sense of smell. I’m grateful he’s going to look over all my records since I became ill too and for me, that’s a significate step in the right direction as its a true second opinion
I have new symptoms now with reflux acid, my taste is changing and my sense of smell which has been all over the place is still altering for the worse (couldn’t smell some very strong bleach the other day, yet my eyes and throat certainly told me it wasn’t good). My voice is still as bad and I’m now having some speech therapy which is where I found out about the reflux (hadn’t noticed it - but I’m guessing its been there a little while), I’ve also had an endoscopy which has revealed I have a weak larynx causing my vocal issues.
I’ve had two sessions now and although I find it very challenging to make certain noise plus alter my vocal pitch or levels, the therapist has noticed that my voice also quivers (she heard it once in the last session) and has also said she will be asking some of her colleagues from that moment about other methods as again I’m not typical for the usual visitor. She has also noticed how difficult it is from me with controlling facial and vocal muscles. Its just a good job I can laugh at myself as I’m there trying to make a cat prrring sound and my lips will just stop moving and then come back, I’ve also been told the level of concentration and effort I’m having to put into these small tasks isn’t normal with typical vocal problems.
I know I’m going to be a tough one to diagnose and its just going to be that way. I’m still certain its something neurological which the specialist has also agreed it is (although what it is still to be determined)
If your husband is able, I have found the best thing for me is vigorous exercise and without it, things become more difficult indeed. What’s odd is it’s something I have to really work at and for myself is about 27km a week running plus anything extra otherwise unknowingly things become far more difficult for me to do. Since Christmas after a injury It’s taken me more than a month to find the level before I was injured. This is longer than it has ever taken before which isn’t good as the last like I took a break because of school holidays took longer than the time before but shorter than this time which is a showing pattern.
Even with exercise, all the my typical symptoms are still there, I just notice them more without keeping myself topped up with exercise.
A question to others out there. This winter I’ve really noticed when I get cold, I’m freezing (cold to touch too) and it can take hours for me to warm up even with the heating on high, other times I can be sweating when its warm and then I can feel perfect when others around me are cold. It doesn’t matter if I’ve had a session at the gym either when I get cold, I’m just freezing. Today I was out picking my daughter up from school and my teeth were chattering uncontrollably and I was shivering even though I had many layers on