Is incontinence another effect of PSP? My husband is having more & more problems with this. It is becoming difficult for him to be out of the home for long without an accident. He is also diabetic, so this could be a result of his diabetes.

His walking is rapidly becoming more difficult. He is so unsteady & shuffles greatly. It is so sad to see him having such difficulties. He is declining before my eyes.

18 Replies

  • I'm sorry you and your husband have to deal with this, but, yes, incontinence is a common problem with psp. We have have tried all manner of drugs, even biofeedback therapy, with no real help. There is lots of advice on this site, and if you search back through the archives you may find some more information. The convene (I think?) system, a condom with a tube, essentially, has been helpful for some. Hang in there. Easterncedar

  • Yes incontinence is a common issue. Chris had occasional accidents then started with regular urinary incontinence at night in June this year - four years after onset of first symptoms. In October the incontinence spread to day time as well. Our neurologist was shocked as she felt it was 'early' for the onset of incontinence. It has been really difficult for him to adjust to wearing padded pants all the time but he is now coming to terms with it, although we still seem to make an awful lot of toilet trips when out - I now have a reputation for hanging around outside Gents toilets! Disabled toilets are quite rare here in Turkey and we also can't get convenes. I always vowed we would never have twin beds but the incontinence has persuaded me otherwise as it makes washing sheets, etc., so much more manageable. Yet another horrible part of PSP for both the patient and the carer. Hang on in there.

  • Unfortunately, yes, it is all part of PSP. Like Pattz I said I would never buy single beds but I did. My husband now wears convenes and it has made things so much easier. We can go out without worrying about where the toilets are or soggy pads. I take a 750 ml Comfort bottle everywhere I go so I can empty the bag when necessary and as that size bottle has a coloured cover, no one can see what's in the bottle. Before the convene I'd take the bottle so he could pee in it in an emergency and when he was no longer able to stand alone.

    I do hope you find a suitable solution acceptable to your husband and you as there are ways to make life a little bit easier.

    Nanna B

  • Hi, I am afraid, we are all there! My husband keeps having problems. Started a long time before diagnoses! Every so often he has to wear pads. So far, each time, once we accept that he has to put a pad on before bed or going out, after a week, he is back in control. Going through it again now, it's taking a bit longer this time, so I don't know if he will get control back this time. But I am finding, if you worry about and make a fuss, it makes matters worse. So you have to go with the flow, oh, excuse the pun!!!!

    If you are in the UK, we do have bladder clinics. Which a specialised nurse will be able to give lots of advice. Get your doctor to refer you.

    I agree, it is very sad what this disease is doing to our loved ones and there is nothing you can do to stop the decline. What we can do, is make their lives as interesting and fulfilled as is possible and keep fighting this blasted disease, to keep the symptoms at bay for as long as is possible!!!

    Lots of love


  • Thankfully at the moment this hasn't reared its ugly head at us. However as my husband is aware it is likely to occur as a sympton he tends to go to the bathroom much more often, and an enormous number of times during the night as he is afraid of it happening whilst he is asleep! Consequently nights are a real bind as, although, he can still get himself up from the bed, when he comes back to bed its a case of thump himself down so I am obviously woken. He does have balance issues and shuffles too, but if I can get him to stop the 'silly steps' as I call them and look ahead he can walk so much better, unfortunately this does not make him feel confident and insists he must watch his feet so he doesn't fall. So at the moment, until I find my way its a case of constant tiredness, headaches and being grouchy. The difference this weekend to last when he enjoyed a trip to a concert in Cardiff is startling.

  • Hi Gilljan At the moment my husband has not had the symptons, god I am hating the day,

    he is such a proud person Its going to be a terrible situation for him. It take every dignity from a person


  • hi im bait late replying to your post but for what its worth u can gert med ication for the bladder problem which has reduced jmy going to the loo form every hour to 2/3 imes a night well worth trying - they incontinence nurse recommend d it to me and it doews work SOLEFENACIN is its name and i take small dose at night - time and it certainly works for me

    lol jill

  • Sorry to learn of your increasing difficulties and all I can add is that 'Kylie' sheets were a help in addition to pads for nighttime cover. I have no experience of 'conveens' (that may be a trade name) as it was my wife who had PSP, but from an online search they seem a most useful addition to making life more convenient all round. Best wishes, Jerry.

  • Yes it is. We are at the beginning of coping. Usually he manages if there are no delays. So he usually wears pull-up joggers. We found the delay in struggling with zips was too much. He doesn't cope well with pads. We have an appointment at the incontinence clinic in Feb. I think we will need it by then. He has only wet the bed once so far.

    I have found it best, as with most things, to use humour to deflect from the feeling of shame. We try to see it as another problem to battle together.

    Its a really challenging disease, isn't it ? Jean

  • Hi Doglinton, My husband is a very proud man, and I know this situation would be so hard for him. I know someday we will come up with this situation but i dread it. I know its another battle.

  • Hello, Putland. Yes . My husband is a proud man who was always smart and it is so humiliating for him. I think it is more difficult for men, not having had to cope with body functions in the way women do. At one stage I said "get a grip. 12 year old girls have to cope with periods ! " But I think that was a bit unfair as he is 80 and sees it as wearing nappies like a baby. He was being secretive about it but I say we just have to pull together to keep him clean and sweet-smelling as long as possible and not be beaten by P.S.P.

    I try to emphasize we are fighting this together.

    It does feel lonely being a carer, though. Jean

  • I was wondering if this was a symptom. I'm my mums primary carer and she now wears pull up pants to bed, more in an attempt to minimise trips to the bathroom and potential falls. She's also on Tropsium chloride which is supposed to help with frequent urination depebding on the issue. This is mixed results, but has unexpected bonus of causing dry mouth which actually is a positive as its helper with the choking on excess phlegm/saliva. Mum has had a few accidents in public of both kinds and now also has commode in room. It can be difficult as mother and daughter to empty commodes and change night knickers and mop up accidents, especially as I'm very weak stomached. I've never had children so don't really have the experience of these matters! The continence advisory service which I self referred my mum for have been really helpful. I think mum needs to wear pads in the daytime too but I've not broached the issue fully as yet.... Mum is also up several times a night, I've installed a doorbell for her to ring and as her mobility is pretty poor I have to get up every time she needs to so to be honest I'm exhausted! This this impacts on my patience and mood but I'm going to look at alternative help and ideas in the new year. For now the main thing is to have a lovely Christmas everyone :)

  • My mother MJ had all the above symptoms that you talk of. For two years she wanted to go to the bathroom ALL the time. It was almost every twenty minutes. With each trip to the bathroom there were significant fall risks. She was finally catheterized which made a huge difference for both her and caregivers. Home health care came once a month and changed the cath. It was a difficult decision but when weighing the odds of falls it became easier to see the benefits of a catheter.

  • Yes, sorry to say it definitely is a real problem with PSP. Dad had massive trouble with this towards the latter stages. He had many accidents, sudden urge to go, sometimes felt like he needed to go but couldn't when he got to the loo. Dad was diabetic too. The OT provided us with plastic urinal bottles which we kept near his bed at night-time. A commode was also provided. When he was in hospital at the end stage he had to gave a catheter fitted as he kept giving trouble. His confidence went down with every accudent and get felt embarrassed too. But we never ever made him feel silly. Dad was very old school, never liked to talk about it.

  • I'm afraid it is part and parcel psp and depending upon where the tangles are depends when it starts to be a problem. Brian started off with just haveing to get up loads at night but ok in the day but as his mobility worsened he has become more and more incontinent. Was told that most psp people empty there bladders at night without knowing about it. It is vary rare that Brian knows if he is wet now and it seems as if he doesn't know if he needs the bathroom. I now have a (care home) routine. I toilet him at set times before meals and before and after bed naps. At least that way I know he is not sitting to long in a wet pad. After his afternon nap I do make him sit and I have to tell him to sit and push so he will have his bowels open.

    it is sad to think that he is aware of so much that is going on around him and can comprehend when he is having his pad changed that he is wet/soiled but there is no sensation that he needs to go or has been.

    And there is no time scale as to whether it will be early on or later in the psp timetable it just depends on where and when the tangles tangle in the part of the brain that controls what.


  • Jzgirl, My god its such a horrible disease, I understand that he is aware of what is going on. My husband at the moment is controling his toileting during the night, I know the day is coming when he wont be able for this. Its such a lonely life for the carer.

  • I think my husband is nearly at that stage unfortunately. He is making more & more trips to the toilet during the night, and fell twice in the night with such a crash I was instantly awake & sprang out of bed. Luckily he doesn't appear to have hurt himself. He is so difficult to deal with as he resents help most of the time, so I'm dreading yet another step to come. His mobility is now so much worse in the latter part of the day, but he has got more restless in the last couple of weeks, so tries to move about more often & then falls as a result. I feel I need eyes in the back of my head ! I suspect he realises things are rapidly deteriorating, but he won't communicate with me, so it's so hard to know what his thoughts are.

    I moved into the bedroom right next to his a few weeks ago, because he was so restless & made such thumps as he got back to bed, that sleep became a huge issue for me. He resents this very much, but at least this way I can get an hour or two even with having to deal with the sudden crashes.

  • Hi Auntiemary, I'm struggling to keep my eyes this morning! S was up every half hour last night. Nearly fell off the bed with his bottle, then decided, that he needed to get up to actually go to the toilet, so was on tender hooks most of the night. So never managed to sleep in between his awakenings! I don't know if it would be safe to actually leave him and sleep elsewhere. At the moment he is nursing yet another sore elbow, just gone "skating" on the carpet!

    Now I have to get him and me ready to go and face the supermarket!!!

    Lots of love


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