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PSP Association
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Is incontience part of Psp?

Just wondering if incontience is part of Psp

I think it is!!

My dad suffers terribly with constantly needing a "pee"

Dad has enlarged prostate too!!

Dad wears pull up's (bless his heart)

We have an incontience nurse (mum doesn't like him)

Dad has tried convenes unsuccessfully hence the pull ups

I might have addressed this before but after reading and reply to so many posts I'm confusing myself!!

I feel incredibly sorry for my dad having this awful issue and it seriously affects every day, ie can't go out (further than 10 minutes In the car)

Can't visit friends because dad gets embarrassed and equally can't use their stairs for the toilet

We mainly use a bottle indoors, for ease, but all dignity gone!

We have q bathroom downstairs but the walking is a massive problem therefore the bottle is easier!

I'm just having another rant really but any comments/ideas would be very useful


15 Replies

Sorry to say yes it is. And they tend to get something called night voiding. Wich means they need to urinate more at night.

My Brian is now double incontinent so we have now gone pass the stage of worries about toilet visits. It is a cruel desease and you have to cope as best as you can. Janexx


What jzygirl said! Incontinence or not able to go is a PSP thing! however the inability to go is also a prostate thing so I don't know if the prostate problem makes it harder for the PDP problem but I'm sure it is!

Tamsilousin is what B takes. It does help for night voiding though he does have a tendency to stand longer than the regular person. His prostate is normal. You might ask dr. about this drug for your dad! How long has he had it ...I know you told me but.....



yes. The indignity is very hard, but he uses the depends with a guard inside and that works pretty well during the day, so he can manage to go out. He is increasingly using the bottle at home during the day, as it is becoming more difficult for him to walk to the bathroom, but that works okay - less random splashing about! It's the night voiding that gives us the harder time, but layered pads on the bed keep trouble to a minimum - I change the depends (and guards) and the pads a couple of times a night and he tries to use the bottle a few times. We are hoping to try an external catheter. The insurance is giving us fits about it, but the nurse thinks it will work out. Worth a try for us, just in hope of some sleep.

Hang on. Best wishes, Easterncedar


Hi - please check with a urologist also - one doctor warned me never to use external or internal catheter for my dad since it can lead to infections - so please check


Thanks, Sammy. The urologist has prescribed the external catheter and we have a nurse who is hoping to help us manage it, when the pharmacy obtains it.


We have been using convenes, ( an external sheath, ) day and night for almost two years. Changing daily, using proper soap for washing and light adhesive spray has changed our lives and given my husband back his dignity as we have no fear of accidents when out. We also use a wheelchair much more . My husband has had no infections due to the sheaths only one after a visit to the hospital when they inserted a probe.The situation may change I know, but for now we can go out and also to bed relaxed in the knowledge that it will be dry the next day. I put the bed bag into a plastic waste bin and peg it at the top with washing pegs for safety.I do hope you get the proper advice, we had similar problems but Convenes have been a great help. X



Just read your post re your dad pee probs

. That is my hubby prob always looking for toilet does very little wee when he goes , but goes often . Scared to drink too much in case he has to go 30 times instead of 20 ! So since we've seen the continence nurse at clinic , I have been taught to use a cateter on him . He doesn't have to wear it all the time , but will use one if going out for long day , or before visiting friends , and before going to bed , it just drains the excess pee that he can't pass .it was explained to us being a psp patient , the muscle above the bladder doesn't work properly , squeezes a little then stops that's why he can't pass his pee properly . Plus he has enlarged prostate . It's working for him at moment ( the cateter ) nurse say he may only need it every other day . The catheters r a once only job then thrown away , we get funding for them from Medicare up to $580 which is a big help . My hubby says there no pain using them .

Good luck xxchrism


Well hello there,

Yes, you're right - incontinence comes with the hand we've been dealt. However, I'm lucky because in Elizabeth's case it's not consistant - just every now and then for 2 or 3 days per month. Nevertheless, the 2 or 3 days are never the same each month. The meds she takes cause constipation so I give her daily doses of a mild stool softener and a mild laxative every other day. This helps me to manage it most of the time, providing she has a bowel movement every other day. When she doesn't, I get twitchy. I'm hovering around her saying, 'everything alright is it lover ?' or, 'do you -um- need the loo at all yet darling ?' She's lost almost all her speech ability and can barely move her neck enough to nod or shake her head and, to be honest, I can't tell the diference between her yes or no or a nod or shake of the head anyway. Mind you, when she is able to say , 'i need the loo,' it's a blues and twos job and our cats are fighting each other to reach a place of safety through the cat flap. It's about a 15 second run from our dinning room to the loo and I can usually make it in time, but if she's out of the wheelchair in her riser chair in the sitting room the odds are stacked against me and I've failed a few times but only just. 'Oh dear never mind', is what I say, but I'm thinking 'what have I done to pith you off God - why me ?'

I've got a bells and whistles, singing dancing bidet seat fitted to the loo and when I've got her on in time my job is done - it even blow dries with warm air. Just fo info' you can pick standard bidet seats up from the net for £40 or £50, don't forget we're VAT exempt for this sort of equipment. I got the high tech one because it has a turbo wash setting that helps when constipated in a way similar to an enema.

Anyway, that's enough from me and

Hugs to all


Oh, the cats line made us laugh! Thanks for that. You have to laugh, don't you? The bidet seat is a good idea. Thanks for that, too! You are clearly a stalwart warrior, Chris. Hugs back to you, Easterncedar

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Awww shucks, you say the nicest things - thank you for your kind words.


I am sorry honey this disease robs us all of dignity, esp our loved ones. the bottle is a good idea, this is part of the disease, the urologist may prescribe some medicines for enlarged prostate that may help. Also try elevating legs in the day, esp if the problem is worse at night. What happens is water pools in legs and when we lie down at night the kidneys process this water and make pee and hence the problem gets worse at night/ this is how a urologist explained it to me. The disease does affect the nerves that will also give your poor Dad the false sense of urgency, hopefully this will pass soon.


Hi Satt. My husband F is mid 60's so enlarged prostate is normal. He was going for a peek a lot, it was exhausting for him. Up a lot in the night. Going out is difficult as it takes ages in the loo. Queue forming outside. Then GP put him on Tamsulosin. It still takes a while to see but not so often. There are still moments when he needs to get there fast and we have backups. This usually happens when he's very tired. Bearing in mind he has crossover frontal lobe/cbd/psp it seems that the multiple Neuro probs cause this same issue. We are waiting for a urology appointment, ooh a day out! Don't forget that some foods irritate the bladder, saccharine is one and some colouring and favouring. Good luck.


As always thx u for all your replies

For additional info

My dad is 76

Had prostate probs for over 5 years, is on combodart to help

Gets up continually throughout the night with help!!!!!

Psp was diagonosed just over a year ago

Thx u all for your continued support

Big love x


Hi, I know this sound awful but once he gets over giving in to the urge when wearing protective pants life will get a whole lot easier for everybody. No up all nights and dangerous trips to the loo (and broken ones I've heard about on this site!). You will be able to take trips without stopping to go or disturbing others in films etc. Just double up and add guards which can be discreetly removed or added to as you go along. And for safety sake bring along a change of clothes just in case. They make side tab ones that can be removed without taking off your pants and shoes & socks. Also there is a urinal that attaches to a collection bag that can hang by the bed as well. We used one for a year. Good ones don't spill and my husband was able to use it himself without waking me up all night. I know it hurts the pride but like a wheelchair it increases your

freedom to do things. Hope this helped and good luck to your Dad!


Also forgot to mention that my husband also has prostate issues. Apparently scar tissue makes it more difficult to hold and control the flow. He does take medication and we were told surgery would help but I do not want to subject him to that if it is not 100% necessary. My husband did not like the condom catheter and has had several urinary infections so we are not going to do a catheter as it can increase the amount and severity of bladder infections.

And as everyone else mentioned it is a PSP thing!


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