PSP Association
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Well hi again everyone. Still living the nightmare that is PSP....

I have a rather uncomfortable subject to ask here it goes.

Dad is getting pretty bad lately, slowing down, lots of falls, exhaustion, eye problems, a bit of confusion, etc etc. The one I am concerned with the most is his inability to go to the bathroom without a great deal of pain. His stools are so HUGE (about the size of a soda can!!!). He regularly takes stool softeners and senokot, but that isnt working anymore. Yesterday, after coming out of the bathroom, he was sweating so bad and was sooooooooo pale, it was scary. It is nothing for him to plug the toilet 4 times a week.

Any suggestions would be appreciated.

Sorry for the subject matter, but we could really use the help.

Thanks again,


13 Replies

Sorry Mark, This is not something I have come across with my husband. Good luck (have experienced all the other symptoms!)

San x


hi mary j

i too have bowel probelms and bladder problems otoo

being addressed by thei incontinence nurse

(was said to be having too much fibre ) reallly??

but am now backj on t he red wine and chocolate which makes it a bit easeir

do nto worry about puttign personal things on this site

we r allg oign thro it 1 wayh or another

and my p=ile sand cionstipation hav ebeeen doing me in

not shiftign from the toilet m uch of hte ngiht and day at times

lol Jill




My late husband had bladder problems too. Here in the states it seems that the first thing the doctors want to do is insert a cathater.....not always a pleasant solution. So, My husband never had one but I used depends and it really helped him alot. He never felt threatened to travel, go out on the town, or whatever as long as he had on the depends. He was unable to control his bladder 50% or more of the time.....we worked together to keep him from having to have a catherter put in. So, if you haven't tried it do so. It will set you free.

God Bless, Ileen


Hi Everyone,

My husband recently has started to have bowel and bladder problems, the bladder problems started first. When he was a little bit more independent he would go to the toilet but then urinate on the floor. He would then either use the toilet roll and place a large pile of paper on the mess or just leave it for me to find sometime later. Now he needs more assistance this problem has stopped. Now what happens is, if I don't respond immediately to his call, he is unable to hold his urine and hence urinates where ever he is at the time. He has been given Oxybutinin to help this problem and things have improved, but he does still have accidents.

The bowel problems have just started and sound very similar to MJ's dad. We have found senokot, increased dietary fibre and doubling the quantity of fluid he drinks has been fairly successful.

What indignities sufferes have to endure with psp and I think we are still in the relatively early stages of the disease.

Love to all



Hi MJ, is he seeing a dietician? Must have plenty of fibre in the diet. Mum takes alot of pills and she has diabetes. I give her : wholemeal bread, steamed vegies including brocoli carrots green beans whatever vegies u can find she has a soup bowl full twice a day, try cofee with no milk, try hearbal tea, i give mum a nutri slim tea and too much gives her diareah so in moderation but it works, rye bread - only max 2 slices a day, also try half a glass of vegitable oil. Sounds like he really needs to change his diet. Good luck with it hope some of this works for u. Bananss and potatoe will make it worse cut it out for a while. Xx Mia


Impacted bowels can be a major problem with PSP. My husband suffered terribly and I can say that he too had the same exact problem as your Dad and you must be careful about the way he becomes physically, sweating, pale, weak.....that means his blood pressure is dropping and he could pass out - like my husband almost did. This is caused from exerting yourself trying "to go". The Hospice nurse gave us two things for him to take and he never had another problem with bowel movements. She prescribed Senna which is a pill - he took 2 pills 3 times a day. Also, Lactulose which is liquid and he took at first 2 tablespoons 3 times a day then one tablespoon 3 times a day. My husband was so happy to have resolved this problem. Ask your doctor to prescribe this and I guarantee he will not have to deal with this any longer. Let me know how it works. If you do nothing I guarantee you he will get impacted bowels like my husband did and that is just awful.....he would need to have a Hospice nurse (if he is inHospice) or a medical staff at an emergency room dig out his stool. It is not comfortable! So call your doctor as soon as possible. I tried chaning his diet - that did not help. PsP affects the muscels in the bowels so they don't work but these meds will resolve the problem. Please let me know how this works out.



I was a carer but constipation has been a problem for me for all my life till December. ( I now have Diverticulitis)

I took Bisacodyl, a small yellow tablet, which gives ONE bowel movement. The user may get slight pains in lower abdomen and that is usually a sign to head for the toilet! It is also marketed as Dulcolax, but I found the loose ones in a bottle on prescription from the chemist were slightly less explosive.

The other is Fybogel, a sachet, orange flavour husks, which gives additional fibre. Empty sachet in cup add water and drink. This does thicken quickly so you need to balance how good swallowing is. ie more water if user is slow drinker. Do be careful if there is swalllowing problems as husks may stick in throat. I take half sachet after every meal.

Personally I do not like senna as the smell and accidental staining were too much for me. If I can be of further help, just ask.


Hi late husband had really terrible trouble with his bowels. Please see your GP & ask for a referral to the Incontinence nurse. There are numerous things she can recommend. Frank tried Fybogel, Senokot, more fibre in his diet to name a few. He still struggled & on a couple of occasions actually went 2wks without emptying his bowels. He had to have an enema a few times but the nurse was going to try Anal irrigation & we had the equipment delivered. This isn't a pleasant procedure so please get medical help before it gets any worse. Some of the remedies mentioned by others may well work for your Dad but help is definitely needed & sooner rather than later. I speak from experience. Good luck. Take care & try to keep smiling. Love Hazel B xx


My husband uses Movicol. These are sachets mixed with water. These have definitely helped him. If he is having great difficulties he has three/four sachets that wrk within 36 hours. He won't take the, daily, only when he is bound. Senocot and dulcalax don't work fr him. I hope this helps.


Wow...I am touched by the number of responses. THANK YOU. I have written them all down and will be discussing them withnhis doctor.

Keep sending ideas all......we could use all the help we can get it.

Not sure how long the list of indignities is going to be for PSP just seems like one thing after another. Horrendous disease.....

Thanks again EVERYONE



Been there -done that . . . I used to tell my dad - - -well "shit happens". My dad went through the same stage where he could just go a ton. We used the senna and we also used Miralax -Miralax is great because it doesn't engage the stomach so there are really no side effects -like cramping. The only draw back is that it doesn't thicken. It will also thin out yogurt. We found that applesauce or pudding works the best to put it in. Try that and see if it can't help get some regulation.


Mum has fibrogel which works well but I think it is a pain if you are having swallowing issues as it may not be something they like. Lactulose is really nice and easy to take and gentle. You

take a spoonful morning and evening. It is very sweet and thickish but more pleasant than tablets too.


I should add that you can buy lactulose over the counter. Also be aware that if you leave constipation, it in itself can cause a major setback-mum had this and a UTI and we nearly lost her last month. It has taken her 6 weeks to get back to where she was before that happened.


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