I am writing this for my mother in law to which is the sole carer of her husband with PSP. As many of you no it is hard to get time to yourself. She has not been satisfied with any help from anyone on this. He is sweating extremely a lot at night she may have to change bedding 1-2 times in the middle of the night she asks him if he is hot he replies he is cold. She keeps a light blanket on him but doesn't want him to be cold... During the day this also happens but he seems clammy not hot no fever. Is this something anyone else is dealing with? If so what can she do to help him be comfortable. The doctors and nurses just don't seem to care since he has PSP. UGH!!!! One more question any one use melatonin for help sleeping? If so what strength and how many seems to work. He seems very restless at night as they do seem to be. He is taking Oxybutynin at night. Any help!!! Thank You !!
profuse sweating.....: I am writing this for... - PSP Association
profuse sweating.....
Hi gahelper1414
With PSP/CBD there is often damage to the system that controls body temperature and sweating (autonomic nervous system - particularly the hypothalamus). It is more problemmatic with MSA sufferers (and often occurs in Parkinson's).
My wife sweats profusely, sometimes initiated by a hot drink (but not always). Due to certain areas of brain damage, some have more facial sweating than whole body (my wife has this problem). Rather than use suggested medications, I prefer to use cold packs.
It's also interesting to note that some sufferers will have hot areas and cold areas at the same time and this makes it difficult to manage their comfort. My wife is sitting in her recliner as I write this, she has a blanket over her legs (that seem cold) and she has hot feet and face!!!
I'll let others talk about sleep medications like melatonin, since my wife sleeps well! (Some PSP sufferers will sleep most of the day and night). In some ways this is much better than having sleepless nights.
All the best
T.
Please do contact a PSP advisor. They are trained to advise carers and patients on the management of symptoms and can contact your gp and others to get the right meds and support. Mum had some of this but not to a degree that your father in law does. Thank goodness they have you to support them.best wishes Dianne x
Hi, I just saw your piost from 3 years ago. I am in the USA. Are here any PSP advisors in the US that can help?
My husband had profuse sweating at night but during the day also. This sweating is nothing to do with body temperature it is related to the function of the hypothalamus in the brain. I just had to use towels to absorb the fluid but it was difficult to manage. Sometimes his clothes and bedding would be soaking wet within half an hour of changing. I also found that the health professionals were very dismissive of PSP and had no understanding of this awful disease. My thoughts are with you as you struggle to cope with PSP. I just wish I could offer you some support
Iris
Hello gahelper1414
hello gahelper1414.
I don't know if it would help but Kylie sheets are super absorbent and intended to help with incontinence problems. Whether or not they would work for sweating I have no idea but I would try anything to cut down night time bed changes, your mother-in-law must be exhausted. You may need to use two to cover the whole length of the bed as they are only sized for the middle section.
My experience in regard to the health professionals showing a total lack of interest was similar to yours, I guess since there is no treatment they feel their time is better spent elsewhere!!! It would have been nice to have had an occasional call to check that the general health of the PSP sufferer was as good as could be expected and nothing more could be done for their comfort. Fortunately, in this area (Forest of Dean), support from Social Services and a local Hospice were 'gold standard'.
Make sure your mother-in-law takes good care of herself, hope the sheets work, best wishes, Jerry.
My husband has suffered with sweating for the last 5 years or so. It worsened three years ago when he was admitted to a Nursing Home. The doctors told us that his autonomic immune system was affected possibly a symptom of PSP but they were not saying that for sure. Sometimes you could wring out his bedding or shirt, it got so bad--and yet his feet were cold. Over the past year, I would say it has improved and although there is some sweating it isn't nearly so bad. We have been making it as comfortable for him as possible. He has a fan in his room that runs nearly all the time for air circulation and change his clothes. This has been a nuisance but other symptoms have been worse. Sleeping has not been a problem for us.
Mary
Just read your post, re;sweating my sister 80 was very clamy when I visited her the other day, beads of sweat on her face but back of her neck was hot. Got staff to take her temp and it was normal,she can't speak much now and can't tell you if she is in pain. Such a terrible disease.
hi #
i do nto hav ethe sweating problem - yet - but i do have cold hand sand feet all the time
i took oxybutanin at night but have now switched to solefenacin which seems to work for me in that i go twice a night to the toilet for a wee (instead fo hourly)
i do have problems with restlessness and cannot stay in bed once i am awake - hence the early am postings here
and i cannot have a nap in the afternoons any more
it si the PSP I know that
lol Jill