Hello everyone! I take care of MIL and she was recently diagnosed with PSP. It has become increasingly hard to understand this disease there always seems to be something new. I want to know if it’s common for them to make a humming noise constantly or just repeat a word or phrase over and over again? She also has a lot of issues with incontinence and UTI’s. It has come to the point I have to basically shower with her to make sure she doesn’t fall. We have a shower that’s a step in and it has the grab bars and a bench but she doesn’t comprehend that she should be holding the bar or sitting and sitting on the bench. So I just help her shower it just gives me the peace of mind that she will make it out safely. Does anyone have any tips that may help especially with the incontinence. Should I get a commode for the bedroom? Or a bedpan? Please help! Thank you!
Trying to learn more about PSP and its sym... - PSP Association
Trying to learn more about PSP and its symptoms
Unfortunately, falls and incontinence are part and parcel of PSP. I can point you to a video lecture in which a neurologist talks in-depth about PSP here: youtu.be/ocS6FLBseTY.
Also, I can point you to a paper written by Professor Rowe et al, which can be found here: pn.bmj.com/content/21/5/376.
The PSP Association, which you can search online, has a good synopsis of PSP, as does the NHS website.
Having just said it takes too long to reply, my daughter typed the reply above - perhaps that's the answer, but I don't like to impose
Thank you I will check out the video.
Dear Teerae95
I’m sorry to hear you’ve had to join our group, I hope you can find help and support on this hard journey.
First - the humming is common enough - it can stop or get worse, don’t let it upset you. The repeated words is called something like “echolalia” and is quite typical. I find myself still repeating key words because it became part of my husband’s language.
Toileting difficulties are very typical for PSP however it’s important to still get a checkup to eliminate other causes, and be vigilant about UTIs. Get a pack of home testing strips so that it’s easy to check.
Depending on what’s the main problem - I believe there is a device that can “wick away” and gather any urine incontinence at night for a female. I’ve not got experience of this - the equivalent option for men would be Convene (condom catheter). Both help, in that it’s not necessary to rush to the toilet, and that they stay dry and comfortable.
During daytime, pull-ups adult nappies are helpful. As you already recognise, hygiene becomes really important, safety in the shower becomes difficult - and skincare is vital.
You’ll need lots of patience, and acceptance. They cannot help it when the brain signals don’t get through to the body. Be kind to yourself, ask for help - and as many have said before me: ditch the guilt.
PSPA can help with lots of information and support - similarly CurePSP. Continue to ask question here, and look up previous posts and answers.
Best wishes, hope and hugs 🌻🤗
You can ask your local medical professionals about urine management e.g. Purewick
Hi Teerae95,
Welcome to the group that nobody wants to be part off.
I’m in the UK and our health care system is very different from yours. If you have access to an Occupational Therapist they can advise on what equipment is suitable.
On your specific question of a commode, the OT suppled one for my wife. This certainly helped at first as one of the very many symptoms is the time between wanting to go, and going becomes very short. It even meant that sometimes she could go without waking me up.
She has since moved downstairs into a new bedroom and wetroom. She still uses the commode, but she usually cannot get out of bed by herself. We have a baby monitor and a ‘hotel reception’ type bell which brings me hurtling downstairs, where I usually get there in time.
Only other tip I can give is to try and find a local group of PSP sufferers, you could ask on this forum (there are other members from the States) or there may be other American specific forums. Just to sit down with a coffee with people who understand can itself be a relief
Pspuser, Hi.
..She has since moved downstairs into a new bedroom and wetroom. She still uses the commode, but she usually cannot get out of bed by herself..
Please be careful. Such patients because of impulsive behaviour try to rise all by themselves and then fall which could mean immediately going to A&E..... Such patients must never be left unattended. 24×7 fully devoted care is a must. Best wishes and regards to you and your dear PSP sufferer.
Hi, I’m a PSP sufferer myself. Don’t hum but toileting is an issue. I can’t move without support from a carer, so may be different from your MIL. Anyway - here goes. I have a commode both downstairs and up. I can usually hold urine until I’m sitting on the commode - but not always. Sometimes it’s almost as soon as I acknowledge the need to go, I go. It’s not yet often enough that I have to wear pull ups during the day. I do, however, wear them at night so I don’t have to have anyone on hand to assist me to the commode in the middle of the night. I also have Kylie sheets on my bed in case of accidents, as happened this morning. I find I leak if I’m laid on my side - I think the urine seeps through the leg hole before it can be absorbed. This morning was different though. I moved onto my back in time, so it was due to volume, over which I have absolutely no control. I’m woken every weekday morning by my carer. She wipes between my legs with baby wipes plus a cleansing foam called Steri-something. I have a bath twice a week so that no one needs to shower with me, as would be necessary. I have a bath chair to lower me into the water. Have been doing all this for almost a year now but realise things may (probably will) change.
Keep exercising, sing, hug, act normal as poss ....and especially 'core strength' exercises. I am 83, male, PSP diag 6-7 yrs ago, and still active and mobile. PSP = Please Stay Positive! Right now moving house with partner! TimbowPSP
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