Dorothy-Thompson
This seems to be another thing that goes with PSP, a nurse told me that it goes with inactivity.
Anyway, does anyone have any helpful suggestions apart from more fibre, more fruit, more liquids which my husband has in abundance. We're reluctant to use laxatives for obvious reasons.
happy christmas
dorothy-thompson
Hi Dorothy
From my experience constipation is a problem with PSP. It may well get worse as the condition gets worse, have a chat with your GP and see what can be prescribed. In the long run laxative may well be the only answer. There are various products available on prescription, it may be worth seeking medical advice to see what is available and initially taking a laxative once or twice a year.
With best wishes for Christmas and the New Year.
Love Jenni XXXXXXXX
sorry, mean laxatives once or twice a week, not year!!!!!
Well...we have been using senna s (2 pills am and 1 pm) and surprisingly enough three sticks of black licorice daily. It must have some natural laxative. It turns the stool green so don't be surprised if you try using it. It really does help.
I found Movicol worked well, it comes in sachet form and is easily adjusted to needs. One a day , two halves a day etc., it is a case of trial and error. The thing I don't like about senna is, if there is an accident it is very staining and smelly.
hi yes i agree
movicol is difficult as i have had a couple of accidents with it and the poo is v smelly and difficult to remove1
nuff said
lol jill
and a 
for the day
Metamucil is good but i'm not sure if you can buy it in the UK. Because it is non-medicinal,(just a fiber) I take it every day.
Hi , We use Psyllium husk 2 teaspoons mixed in breakfast everyday in (yoghut,porridge ect) also now we are using Movical i a day, it's still touch and go? you have to work out the dose by how often they go so keep a chart? but it works oh and you may have many a laugh when using the Psyllium husk? keep trying good luck
We use a stool softner product. Senicot S I believe it's called. Our Neurologist says you can use a stool softner every day if you like without a problem. Senicot S is not a laxative just a softner which works great for us.
jimandsharynp aka jimbo
Bladder control can also be an issue with PSP along with constipation. We are just entering the bladder control issue after almost two years with PSP. Always something new with PSP. Just when you think you are on top of things something gets tossed your way. Just have to take them all in stride and one day at a time.
jimandsharynp aka Jimbo
Hi Dorothy,
Like several other responders we have found the stool softeners work well. We use Movicol and have found one sachet a day just about keeps Mum regular but if necessary we will give her an extra sachet to help "move things along"!! The nice thing about the softeners as opposed to laxatives is that you don't get the unpleasant cramping sensation that you get with some laxatives.
Good luck!
love Kathy x
Hi Dorothy,
Similar to what several other people have said my husband has senna 2 tablets at night and these seem to keep things moving, however, he does pass very large stools and has on occasions blocked the loo. Another problem to sort out. My husband is on cocodamol which has the side effect of making the person constipated. It's very much treat one symptom and create another.
Good luck
Peter3.
Hi Dorothy,
The nurses recommended senna tablets (stool softener) and I always supplement with a 250 magnesium as a precaution---gentle muscle relaxant. ( I take a magnesium tablet myself to counter the calcium.) Really helps. Good luck!
HI Dorothy
I don't mean to cause any distress but I don't think I took my husband's constipation seriously enough. He was using Laxido and lactulose. He was diagnosed with anaemia on top of his PSP and was prescribed iron which did not help his constipation. He had a bowel movement almost every day but obviously was not clearing his bowel and on 23rd December he was in a great deal of discomfort and the District Nurses used suppositories and I was to give him 8 sachets of Laxido over 6 hours as they said he had faecal impaction. He had had a heart attack 6 years previously and after 4 hours of trying to clear his bowel (I was told the muscle tone in PSP patients is diminshed) and the discomfort he was in, his heart gave up and he died. He was getting towards the latter stages of the disease with his eyes and speech being badly affected but I was not prepared for him to go. I console myself with the fact that he won't have to suffer the final stages of PSP but we never had any family and I feel completely lost without him.
I am so sorry to hear this. However it highlights the seriousness of constipation. Mum also nearly died of constipation as she began vomiting profusely and was unable to even hold down fluids back in August. This was almost the end for her but for the consultant in A&E who was the first and last person we have met in the hospital system (apart from our neurologist) who had heard of PSP and understood it. He flagged this up and she was treated accordingly along with the UTI she had and within 3 days was sitting up eating breakfast after being at death's door when she went in!
dorothy-thompson
Thank you all for your helpful suggestions, we are experimenting with various concoctions, victory is not in sight yet though, but watch this space!.
Hi Dorothy, yes it is a constant issue for Mum and there is often 'overflow' when constipation occurs which may lead you to think it has changed to diarrhoea but our PSP advisor recenlty told us that they have researched and discovered that Flaxseed is proving to be effective. You can buy it at Health shops. It is in capsule form but large, but there is also the powder version that can be sprinkled onto food. It is not too expensive but there are often bargains eg BOGOF etc and I believe the Channel Island health suppplement suppliers can prove to be cheaper. (You would need to get a phone number or use a search engine to find out more.)We are waiting for our GP to agree to try it as with mum in a care home it has to be officially approved when anything is changed. But it has apparently transpired that remedies such as Senna can interfere with the natural rhythm of the bowels in people with PSP- (not sure if it affects those with CBD)
i been there for 11 years because they damage my back in a surgery now is psp i use glycerin suppositories and help a little bit . be strong I been there since 2007 and no hope , but i try the glycerin suppositories and help a little bit. when you have cauda equina that is the nerves at the end of your spine that looks like a horse main tail , i have 2 nerve damage the bladder and the colon , i get use to that but no the PSp sorry Good luck
Davunetide clinical trials.Has anyone ever heard of Slippery Sam bed sheets? Apparently they are used in NZ and Aus to enable the carer to move the patient aroundHelpAs like most of us, 99.9% of the time I am on my own caring for my husband and, again like most of it , find it very to move him when he isMy husband's right hand is very stiff and he cannot open his fingers. It started off with just one finger, sort of like 'trigger' finger
