Hi everyone,
This is my first post my name is Kora and my father has PSP we are at the advance stage now. I hope someone can provide advice. My father keep making noises moaning and even screaming while sleep or trying to. We ask him if something hurts? If he needs anything? But the answer is always no. Does anyone know if this is another symptom of this terrible disease? Has anyone experienced this with their love one?
Thank you very much in advance.
Kora
Many noises...
My husband also makes a low guttural hum... I think it helps to ground him.
Thanks for replying
Welcome to the site. Dad would moan occasionally but there never seemed any type of pain associated with it. If you search through old posts there are numerous ones that discuss moaning, strange sounds, etc.
Ron
Thanks!
Hi kora, my husband screamed and yelled in his sleep often. Sometimes clearly after he wasn't able to speak.. weird, but yes it happens, not to be alarmed.
Hugs, joan
Yes Kora it is a psp thing,my husband yell mostly about work and sometimes clear as a bell.it is nice to be able to hear even if it is at work yelling to a construction crew. Occasionally he yells my nickname and I do miss that.
Dee in BC
Welcome Kora to a great support group,anytime any day someone is reading and understanding what your going through.
Dee
My husband went through a phase of grunts and groans during sleep. It went on for a few months and then stopped just as quickly as it started. Now he grunts whenever he has to move or sit up when he is fully awake, but thankfully he doesn’t scream. It’s just his stiff body trying to make his body work. Some days are better than others that’s for sure. He tells me that his muscles are stiff and it hurts to move. I try to get him to stretch and do the exercises that he has been working on with his physical therapist but my words fall on deaf ears much of the time. I do my best to take his mind off of his aches and pains by changing the subject and I try not to dwell on his agony because it just seems to make him feel worse. I’ll change the subject and ask him about what’s happening with politics. Him being a news junky, I get an earful LOL.
I try to monitor what he watches on TV and keep the shows limited to lighter entertainment. If he watches something upsetting he will have nightmares. You might try an experiment and see if scary movies might be a trigger 🤷♀️
My husband used to moan and I asked him why? He said that it was comforting.
Welcome to the family! With your father, trying asking the question a different way. My husband once broke his wrist, kept saying he was in no pain, although it was pretty obvious he was. Finally a very good doctor, asked on the scale of 1 - 10, what is the level of your pain, Steve replied 11. I had various examples of that happening, through his journey.
Lots of love
Anne
It seemed like no was a default answer for my husband as speech got more difficult. Maybe because it was easier to say than yes? We found that no wasn't what he really meant many times. It doesn't make your job easier. As Anne pointed out, you may need to change how you ask a question to get at the real answer.
Pat
Hi Kora82!
In our case we have observed:
1) Headaches that subside (physically or psychologically) with 650 mg. of liquid paracetamol and with 15´de massages in the neck-back, between the eyebrows and the temples.
2) Pain in arm or leg (always right side). They subside with 15 minutes of massage by applying a cream (no matter which: moisturizer, ViksVaporub, CBD Oil cream, Dog Oil, etc.). CBD Oil orally looks like co-adjuvant analgesic in neuropathic pain.
3) Moans. He usually employs them to request a service or help.
4) Stomach discomfort after eating. They can be gases and usually give way when applying heat.
5) Noise when sleeping. We relate them with phlegm or anxiety state. Three hours before going to sleep we make a session of 10 ' vapors adding lemons and sea salt in the water. For anxiety we give at dinner a Lorazepan 1 mg tablet and 3 to 6 mg of liquid CBD Oil.
All this together with a light dinner and avoiding unpleasant news usually provide us with quiet nights.
Hugs and luck.
Luis
Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
My husband (CBD, presumably) has been making noises in his sleep for about a year. Some of the noises are quite distressing and frighten me, but he does not seem to be in pain .
Marilyn
Same here ... my Mom has been moaning, not even sure what I would call it; very eerie sounds ... she doesn’t remember any of it, and I don’t think she is in any pain.
Thank you for your question. I have just joined. My wife has talked and yelled in her sleep for the last year and a half and about a third of the time thrash’s her arms and legs.
Hi Kora as a sufferer possibly it is just before waking that the noises reflect what your husband sees and he reflects by making a sound. I hope he is as well as possible. Good luck
My late wife would scream in her sleep but this was probably in the early stages of her psp.I just put it down to bad dreams,Acorneater/
Yes, I am going thru that right now with my husband.
Hi Kora82I am so glad in a good way that I am not the only person whose partner with PSP is extremely noisy at nights and in the daytime too.
Sometimes he sounds as though he is in such pain but when i ask him he says no. The night times are the worse. I have a constant headache day and night. I've got to the stage where I plead with him to tone it down but he is unaware of the noises he makes.
This horrible PSP makes life so difficult for the person we are caring for. Is there anything that can be done to ease their suffering?
Can anyone tell me how they cope???
Thanks a very tired and lack of sleep Teeker 😴 💤
Farther newly diagnosed with PSP
Supportive chairs for people with PSP
PSP
End of PSP era.
