sleep problems far reaching

My husband 61 was diagnosed with PD about 10 years go.  I feel hugely sorry for and support him, but as carer have to cope with my life too. Most of the time I do (cope), but there are some very dark moments since I know what lies ahead. Lately his lack of: humour/emotions/conversation  seems to have deepened, despite the meds.  But - aside from all the other PD issues, one of the most insidious aspects is that his limbs twitch at night and he sleeptalks and shouts, laughs and chuckles (yet doesn't when awake). This REM sleep disorder behaviour keeps me awake so it's been separate bedrooms for about 2 years now.  Worse than that, is that any travel/holidays are out because it wouldn't be a holiday for me, and we can't afford two rooms.  A twin bed solves the twitching but not the shouting (it prohibits any gentle shaking).  His neuro prescribed clonazepam, which sedated an already emotionally depressed person - not an ideal holiday companion.  He now has some zopiclone but I'm so apprehensive about sleeping arrangements on a holiday - even a weekend break - that I can't agree to go anywhere (my husband thought I was exaggerating/making it up when I first talked to him about it).  We used to travel a lot and friends keep asking what trips we have planned/or for us to stay with them.  Despite all the other PD difficulties, I was looking forward to a few 'golden years' of trips (even if only within the UK) in early retirement. I find it a very embarrassing, sad and unexpected problem to deal with.

PD for me is protracted grieving - the person you knew has partly gone, and the rest is gently slipping away.

If there is a God, hopefully he'll spare me the agony of dealing with Althzeimers, but I doubt it.

Post-script - Diagnosis for us was a distressing and long drawn out process. about half way through it I stood in a book shop on holiday in Cape Town, watched my husband limp across the car park outside, picked up a medical book and diagnosed PD (but didn't tell him) - some time before the neurologist came to the same conclusion.

Serotonin
Absolutely be sure he is seeing an MDS. They know more about available meds as well as the disease in general.

What meds is your husband taking?

Dan

He's on Madopar, Amantadine and Mirapexin (plus Finasteride and Tamulosin for enlarged prostate). I'm sure at least one of those will be making sleep more problematical but don't know which one.

I'll research his meds more, and an MDS. He's always had a permanently blocked nose (despite surgery to improve things) so sleep apnea test good idea. He's really bad at seeing his doctor but I'll try to push him on that (and only gets to see neuro every 6 months - I don't go with him but maybe I should now). And yes, time has prob come for me to join care-giver group.

Thank you all for your advice - good to have some support/be in touch with others who know more.

Collett62,

It helps me to vent, and no one really gets it except someone doing what you are doing. It is okay to be angry. It would help if you had more support, it is so hard to deal with the slow decline of a loved one. I am dealing with my mother 11 years PD. The hallucinations and constant falling, I live around the corner, have full time care for her at her home and of course still get the "calls".
I don't even realize how stressed out I am, until my body begins to break down. So take care of yourself, talk to a financial planner, look into assisted living, Medicare/Medical won't help you until you are broke, and then it would only be a nursing home.
I wish you well, it sounds like you have always been there for everyone that needed you, someone needs to be there for you.