PSP and sweating

[Mzacc]

Hi all!

I joined the group yesterday and ending up here was fortuitous!

My mum is 77 and was diagnosed with PSP around three years ago, although her neurologist believes that she has probably had it for at least 5 years or more.

She has been in an aged care facility for two years now and her time there has been full of frustration. The staff know little to nothing about PSP. Because of her very limited speech, inability to walk and feed herself, her odd gaze and all the other symptoms associated with the disease, I feel she's perceived as non competes mentus and at times treated as such. I try my best to educate her carers but I think they're probably too overworked and understaffed to really acknowledge what I'm saying.

My family and I visit her twice a day, but in a perfect world we'd love to be able to have her home with full time professional care.

I came across this site after googling "PSP and sweating", as none of the literature I found addressed this symptom.

My mum's neurologist and geriatrician were stumped at the cause of the constant sweating (two or three heavy sweats a day) that started about 2 months ago.

The google search directed me to a query from a member about this same problem which attracted many helpful responses.

Dealing with it is another matter however.

Can anything be done reduce the sweating?

Sitting in wet clammy clothes for long periods until the staff notice, and find the time to change her, is always on my mind (along with all the other struggles and suffering PSP brings)

Thanks for having me!

Maria (from Australia)

[Hidden]

Googling it this came up:

ncbi.nlm.nih.gov/pubmed/146...

It’s technical but might mean something to your doctor..

[Mzacc in reply to Hidden]

Hidden thank you

[Helen119]

Hi my husband kept being sweaty and Clamy, we found it was the skin cream the carers were using, now nothing is used and sweating has stopped, although temperature goes up and down but that is a symptom of PSP anyway.

Good luck xxx

[Mzacc in reply to Helen119]

Helen119 thank you.

[Dadshelper]

Welcome to the site. You already know about searching back posts. These diseases also have been known to disrupt the bodies temperature regulation. When she sweats see if the staff will take her temp, just to see. I completely understand the overworked and understaffed problem at the care facility. Dad was in one for last year.

Ron

[Mzacc in reply to Dadshelper]

Hey Ron,

The RN does check her temperature, blood pressure and oxygen level regularly. The results are mainly within an acceptable range, although she was sent to hospital a few weeks ago with low blood pressure and a fever. The disruption to her body's temperature regulation is what I now understand to be the cause. The symptoms of this disease are so cruel and I know that as she is in now in the final stages, even more hurdles are to come.

I'm sorry about your dad.

Maria

[Almor957]

Como a PSP é uma doença neurodegenerativa, o óleo de coco e o óleo MCT (triglicerídeos de cadeia média) podem ajudar nessa doença. Estudos descobriram que os MCTs fornecem proteção contra doenças neurodegenerativas, como Alzheimer, demência, derrame e epilepsia. Porque o óleo MCT pode fornecer combustível extra para reparar as células do cérebro, alguns cientistas acreditam que isso pode ajudar a retardar o envelhecimento do cérebro. E um estudo descobriu que os suplementos de óleo de MCT podem aumentar os níveis de energia do cérebro em até nove por cento.

Outra maneira importante em que o óleo de MCT pode proteger o cérebro reside na sua capacidade de apoiar bactérias intestinais saudáveis. Como bactérias "boas" no intestino produzem muitos neurotransmissores, incluindo 90% de serotonina e 50% de dopamina, é essencial manter o máximo desempenho mental.

Estou convencido de que o óleo de cannabis (THC), apesar de ser psicoactivo, é mais eficaz do que o óleo CBD, ajudará muito nesta doença.

[Mzacc in reply to Almor957]

Thank you Almor957

[LindaK12]

I can identify with your first 3 paragraphs. Hospitals seem to think the same as the staff have none or very little knowledge of PSP. I am forever having to tell them (he is in at the moment, and hates it)

[Mzacc]

LindaK12 is sad to think of how many PSP sufferers are not being given proper care. Our loved ones are fortunate to have us as their advocates.

[Artteach10]

Welcome to the sight. I know you will get comfort and good information from real experiences. My husband is chilly much of the time and I keep him warm with throws. Nancyxxx

[Mzacc]

Hi Nancy,

Thank you for your welcome message. It's nice to know there a people out there who understand each other, can relate to the same experiences and offer helpful tips to help ease the suffering.

Maria xx

[nayook]

Welcome Maria. What part of Australia are you from? My husband (78), is a PSP sufferer and like your mum, is in care. We are from Ballarat in Victoria. I empathise with your comment "My family and I visit her twice a day, but in a perfect world we'd love to be able to have her home with full time professional care." I spend 6 to 8 hours each day with Rob spread over 2 visits and always including lunch and dinner so I can feed him. As he is often very sleepy meals can take well over an hour. The staff are well intentioned but simply don't have that sort of time. Nor do they have the understanding of PSP. I marvel at the number of US and UK members who are managing home care. I was "falling apart at the seams" trying to cope at home with the few hours of help that our system provides. My back was failing from all the lifting and my mental health was fragile from broken sleep. It was such a relief to be able to place Rob in care. However to have him at home with full time help would be wonderful, but apparently unattainable. I can't help with your query about the sweating, but this site is the place to go. Usually someone is able to help with any of the many issues that arise. Best wishes to you.

Lynne.

[Mzacc]

Hi Lynne,

Thank you for your reply!

I live in Sydney

I pretty much understand now that the sweating is a symptom of PSP and the only thing I can do is to make sure the staff change mum's wet clothes and keep her hydrated.

I sometimes feel that as a family that we should have tried harder to keep mum at home longer. Given my dad's advanced age (now 88) his frailty and his lack of patience ,that it wasn't really an option- but the guilt is there just the same.

Hats off to you for all that you do for your husband and the time that you spend with him.

I was just at nursing home. Today was not a good day for mum- sweating profusely with laboured breathing. Her vitals were checked and all ok. The RN observed: "it's a symptom of the Parkinsons, not much we can do, but we'll keep checking on her".

I've given up correcting the staff. PSP seems to be too much of a mouthful, and equally as difficult to understand. I just want her care to be optimum, and I'll ignore the misnomer.

On another note, l'll be giving my two cents worth in The Royal Commission into Aged Care Quality and Safety, asking for, amongst a bunch of other things, more education for the carers and nurses.

All the best to you and your husband.

Regards,

Maria

[sonikaKharb]

Hi ,

I think sweating is normal in PSP. It can be cause of medicine or something else ..Exactly i dnt knw...In earlier stage my Father also suffered from this....but now in winters there is no problem...

Thanks

Sonika

[Mzacc]

Hey Sonika,

Thank you for your reply.

Mum is in the latter stages of the disease. I guess each sufferer will experience common symptoms but not necessarily in any particular time frame.

From the responses here (and a helpful google link), the sweating is caused by a problem with the hypothalamus in the brain- another issue brought on by PSP.

I wish you all the best for you and your father

Kind regards,

Maria