Hello all I was wondering if any one else is going through this, Charlie now has PSP over 11 years none of the medicines seem to work anymore and his legs are getting weak. I'm with him 24/7 our girls want us to move in with them. What if anything can we give him for the pain and also is anyone having night sweats? He is starting to loss weight lost 11 pounds in a few months.
Thank you all
Marg
I'd get in contact with his doctor and see what is recommended for pain, it may be something over the counter or a prescribed medicine.
Dad stopped walking over the course of 3 days, he could still stand with assistance though. Now nearly a year later he can't even stand, his legs give out as soon as he puts weight on them. All of the moves are done with a hoyer (stork) lift now.
Ron
So sorry you are going through this. Is he losing weight because he can't eat properly? Can he swallow medicine? Pain management really is something his doctor should be able to help with. Acetaminophen suppositories worked for pain after my dear man found it hard to swallow. The liquid medicine tasted so ghastly I think just trying to get that down sapped his will to live.
If staying with your daughters is feasible and comfortable, it may be worth considering, but you may not want to make a permanent move until you find whether the progression is accelerating now or if you will find a new plateau. I never got around to doing major rehabs of the bed and bath rooms, and I guess it's just as well, as my love went so quickly.
Wishing you well, ec
I think moving in with your daughters is a wonderful idea, you're very lucky. They will help you and be there during difficult times. My mum is in her 6-7th year and is now completely bedridden since December. Be very careful with walking if your husband is struggling, you really don't want a bad fall.
Your husband clearly is not being the calories that he needs, it's really worth getting a SALT assessment. Following from this I think you need to discuss whether your husband would want a Peg.
Night sweats are a real problem for us as well. Mum sleeps in a very light cotton top but it doesn't help. We use a bed mat (the cotton wool with plastic undersheet) to absorb the sweat as much as it can. Sorry, can't be of anymore help as we still haven't found a solution.
Give Doctors and DNs a call. They should be on board for pain management or your local hospice if you have one near you. Goid luck.
Marie
Doctors should be able to suggest something for pain. Meds didn't work for my dad. He didn't seem to have pain but had horrible headaches. Didn't know what was causing it. Doctor stopped all meds to see if it would go away. It eased some but not completely. Can't imagine 11 years of this disease. Dad was diagnosed and died 9 months later . He progressed very quickly. However after reading things here I think that was a blessing. Move in with your daughters so that you have some assistance. If he not able to walk now you'll need whatever help you can get. It will become more physically draining on you trying to do more for him. Love and prayers
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