Sweating

[Charliesyoungest]

My dad is in stage 3-4 of PSP. There are time he is clammy for no reason. Blood sugar ok and he's not diabetic, no temperature, no excessive activity ...just curious if any others experience this? Also, recent labs showing no infection

Thanks

[iris2]

This sweating is part of PSP, it is caused by a problem with the hypothalamus in the brain. It has nothing to do with fever or infection. My husband had profuse sweating especially at meal times. His skin and clothing would be wet. This sweating got worse as the disease progressed.

Doctors and other health care staff don't understand this issue in PSP. It is important to replace the fluid loss but I well understand that swallowing fluids is also a problem.

Hope this is a little bit helpful

Good luck

Rita

[nomansland]

Madeline is in year 10 or so ,the worst sweating was in years 4 to 7 but it still happens,it seems to be in cycles,Rollie

[MaddyS]

Hi charliesjoungest

Hubby has excessive sweating, especially at night, sometimes more than once. It leaves him very uncomfortable so his PJs and sheets have to be changed. So far this has not occurred during the day. I'm sure it's another PSP problems.

Maddy

[Charliesyoungest]

I knew PSP worked on the hypothalamus with some but didn't know it affected all PSP patients. Thank you all for your responses.

I do have another question...does anyone's PSP loved one use a voice computer to talk with? Some are controlled thru touch of a keyboard while others are controlled by turning of the head,etc. my dad is trying one today and just eager to know if anyone else has an experience to share?

Thank you all!

[PUTLAND in reply to Charliesyoungest]

Yes my husband has Ipod which he types what he wants to say, presses a button and it speaks. It is very helpful, but I wish my husband would use it more.

[mthteach]

People on here have told me there is no such thing as stages, but I keep seeing people talking about it. Am I missing something?

[Eurohop in reply to mthteach]

That is what I would like to know all I get from my doctor is its progressive. Tell me something I don't know. Would be interested in any replies to your question.

[jimandsharynp in reply to mthteach]

I've posted this several times on this site but I'll post it again because I think it is worth knowing. PSP is not a one-size-fits-all disease. Each patient is different in how quickly or slowly the disease progresses. Each patient is different in the symptoms they have. Each patient can have the same symptom as another patient but to a lesser or greater degree. As far as "stages" are concerned they just don't matter at all. There are supposedly four "stages". However, your loved one could have a bad fall with brain damage or broken hip and die in any "stage". They could aspirate, get pneumonia and die in any "stage", even "stage 1". They could get a serious UTI that causes hospitalization and death. Like all of us there are no guarantees in this life. THINKING you know the "stage" can be very disappointing if you are thinking "stage 4" and the person lives another three years. As caregiver and loved one you'd be better spending your time on care and love. There are no predictable certainties in PSP! Things might be bad and then the loved one rallies and gets better for months. There are some "level" spots (good or bad) often in PSP for some patients. Bottom line it is an unpredictable disease with an unpredictable length of life. My dear wife and I took one day at a time literally not thinking about what is ahead, what "stage" she was in, what symptom might be next, etc. Worry about "stages" robs your peace for today and doesn't change what comes tomorrow. Many neurologists avoid talking about "stages". Ours would never respond to a question "What stage is Sharyn (my wife) in. IMHO Jimbo

[NannaB in reply to jimandsharynp]

Amen Jimbo. I agree with everything you have said.

Nanna B

[JudyJ in reply to mthteach]

I'm a few days shy of 56 having been diagnosed with PSP 2 years ago. For multiple reasons too much to go in to right now, he believes I had PSP for at least an additional 2 years up to 5 years before I was diagnosed.

I, too, was very confused about the whole 'stage' business. I researched and pressed him for answers. It's all quite confusing.

However, my Doc has always been forthright but keeps it simple. He works in 3 stages so it seems; early, mid, and end. I'm 'mid'.

After too many sleepless nights to mention, I decided I liked and accepted his approach. Knowing all of the nitty-gritty and tracking what particular stage I was in from my research stopped me from living and appreciating what I have now, what I can do.

No mystery to me what the end stage is like. So, I'm focusing on making this mid stage last as long as possible.

Perhaps I'm over-simplifying this for you in this moment, but I lived the experience of hunting like a dog what 'stage' I was in. Drove myself crazy.

There's still a lot of vague info out there to really rely on it. My Doc insists some persons with PSP can exhibit some end stage symptoms early in the disease but it doesn't mean they are actually in 'end-stage'...different for everyone.

Hope this helps, even a little.

Best wishes and good luck to you going forward.

[Hidden in reply to JudyJ]

well written post. my wife has just passed 57 and is probably in the same boat as you,

jmbb

[clauitur]

I don't know if this is similar to what you are experiencing but my mom would get terribly warm and a little sweaty at night. I thought maybe it was a hormone thing. A cool washcloth on her forehead seemed to help.

[jimandsharynp]

My beloved Sharyn did not have any sweating that was not normal. Another symptom she was not forced to endure in this wicked disease. Jimbo

[jillannf6]

hi i myself have been in stage 2 since dxs but my speech balance and bowel and bladder probs are much worse then when i was lst dxd

you can find the stages if you google it

lol jILL

[Jeannyg]

My husband is in the later stages of PSP and he has exactly the same problem. I do not know why - no infection either

[Hidden]

medscape.com/viewarticle/47...

try this, sweating can be an autonomic dysfunction seen in parkinsons and PSP.

keep going, and best wishes

jmbb

[JudyJ]

Hi Charliesyoungest:

I've been experiencing heat intolerance/sweating for over a year. My Doc assures me this is to be expected with PSP and is also an issue with persons with Parkinson's.

It's quite uncomfortable as it's occurring, exhausting in itself, and sometimes inconvenient. I have AC and yet I experience at least one round of feeling overheated/sweating for at least an hour every day. Or night. And that's indoors and without exertion.

Just do your best to change his bedding/pajamas at night. Even if you have AC, a fan or cooling pads may also bring him comfort as well as keeping him hydrated during the overheating events. These ideas may allow him and you to sleep for longer periods of time. Quality sleep is essential for both of you.

Best regards,

Judy

MN

USA

[Peter3]

My husband has had excessive sweating even before he received a diagnosis of psp, most nights he needs a change of PJ's and bedding because of it. Ensuring dehydration doesn't occur is so important, my husband gets very tired and refuses to drink too much just at the time he needs more. Can be a bit of a battle.

Like others I have given up trying to decide what stage he is at because his overall well being can vary from day to day and even hour to hour.

Best wishes

Peter3.

[Charliesyoungest]

Thank you all for the responses to my question.

[pankaj911]

Hey all! My mom was diagnosed with PSP in December 2015. It's an extremely tough time for us as a family. She doesn't speak much and her physical activity has gone down. Sometimes, I just want to run away and cry - It's extremely difficult to see her in so much pain.

I have a question > > She sweats a lot at night. When we wake her up in the morning, she's completely drenched. I have read replies above and I think that this is something that's to be expected. We wrap her with a blanket or a light quilt. It's winters and we don't want her to catch cold. We don't use a central heating system or anything - We just use warm bedding. What do we do to keep her cool during the night? Is there a way?

[Hidden in reply to pankaj911]

I was just doing some research and came across your post.

This post is from 3 years ago.But welcome to the group no one wants to belong to.

Dee in BC