Corticobasal degeneration and sleepiness

[Irenephm]

It seems my husband, whose cbd has been diagnosed several years ago, is suddenly sleeping much more during the daytime than only a week ago. Does anyone else have reports on this?

[Hidden]

Hi. My husband is 79 and was diagnosed in 2014 with CBD. We live in NYC and he is being treated at Cornell. He takes 75 mg of Effexor, a mild B/P med, and 25mg of Seroquel at bedtime. He is still mobile but is having difficulty with his speech. His hands are useless and so he needs help with everything. I believe it all began with undetected pernicious anemia. He now takes 5,000 mg of B12 daily and a shot every 2 weeks. Most days I keep him active with company and driving with me to do chores. If I let him he will doze off but I think it is from boredom. I hope some of this helps.

Please tell me about your situation.

Regards,

Rita

[raincitygirl in reply to Hidden]

Hi Rita, I'm a CBD spouse too. May I ask why the high dose of B12? Was it recommended for something related to the CBD??

Anne G.

[honjen43]

My man started sleeping more for periods at a time at end of last year. Don't know if it had anything to do with his meds. Started on sinamet similar time. Then brighter over Xmas. New meds instead of sinamet, changed to madopar. Made him quite sleepy for several days. Then OK for about a week. Then as dose increased, he slept more. Became regular pm nap, then a break and brighter for while, then nap became regular, along with reduced strength.

Think it is part of progression. Look for slight changes to gait or other normal activity and see if you can pick it is after a sleepy period. I thought I was imagining it all but can see a pattern now.

Progression of this disease is different for each one. But I found if I could spot any slight change, it prepared me for what came next and I could think about what help I needed to put in place before he needed it. Paperwork and responses from health workers always seem to lag behind getting what you need!

Hope this helps you. Will try and keep eye on your posts!

Hugs! Jen

[NannaB]

I think it comes with the illness but is he always asleep when you think he is?

My husband does sleep a lot more now, diagnosed in 2015 but about 3 years ago, when I thought he had dozed off, he was often awake but closing his eyes as he can't blink. Now his eyes I either open for a long time, or closed. Now I say, thumbs up if you are awake. Invariably he is. When he could talk and I had friends round, they would often say he had gone to sleep and he would reply, "No I haven't", or if someone said something funny, he would laugh. I always make sure, even now, that I'm very careful what I say if we are in the same room as he hears a lot more than most folk think he does.

X

[steph02]

Its probably the weather. i know that I am falling asleep in the afternoons quite a lot now. I have a less pronounced form of psp and not on any form of medication. It's just too bloody hot,

[Amilazy]

Hi M has been fighting PSP for over 7 yr (4 since official diagnosis) she spends most of the day in a seemingly sleep state eyes closed and head down but is really awake listening smiles when something happens moving position if wanting to respond to radio or conversation, she has no speech and thumb up not always there so movement is her reply.

Be sure he is asleep, ask a question or show him something. Then if still worried talk to your GP or pharmacist and ask if the extra sleep could be a side effect of his medication or just progression.

Best wishes Tim

[easterncedar]

My guy sleeps a lot more during the day now, often very deeply, although he does hide behind closed eyes sometimes if he doesn't care to be engaged. I think everything takes so much effort for him - thinking, speaking, eating - that he simply gets tired. He is not in distress, so I think he should be allowed to sleep as much as he needs to.

[Irenephm]

My husband's cbd has taken his speech from him as well as the use of his hands. He can still stand with help though! I think the effort of trying to make himself understood is often too much for him. It also creates frustration and anger, which I try to deflect with silliness. Sometimes this leads to laughter, other times to more frustration and anger.

[easterncedar in reply to Irenephm]

Silliness often works for us, too. The frustration of not being able to make himself understood is awful, though, and I hate the sense that he is being lost to me minute by minute. Laughing feels good, always.

[Suzzanne in reply to Irenephm]

I do the same going with the silliness or laughter. I think it makes him feel more normal.

[Suzzanne]

My husband is 79 & has CBD. He can walk with his walker, but just a few feet from the bed to his lift chair or to the bathroom. I always have the strap around him. His one big problem is sitting down because he doesn't turn his feet to back up to the chair or bed. Pasr 3 weeks I call the ambulance to pick him up off the floor. He's 6'5" & 265#s. He sleeps a lot. Sometimes he only up for 5 or 6 hours a day. Today is different. It's 3pm & he's not up yet. He tried, but seems very confused. Said he doesn't feel right. Even his speech was not good. He'll be up soon, so I will see how he feels.