Sleep and Constipation with PSP - PSP Association

PSP Association

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Sleep and Constipation with PSP

Karynleitner
Karynleitner

My husbands PSP is as advanced, yet I don’t think he’s in the final stage. He seems to be sleeping later in the morning . I put him into bed very early now due to pressure sores. He has a alternating pressure mattress which helps. He is non-verbal. I am wondering if he is just sleeping more, or if he is awake during the night and I am not aware. Any ideas ?

Also, I am concerned that he has a difficult time having a bowel movement. His stools are soft and often realease when he is transferred (not good and difficult) . Sometimes it is a week or more. Nurse has suggested stool softeners, but the problem seems to be in his body’s ability to move his bowels. This is not a pleasant subject, thanks for reading. You are all wonderful.

26 Replies
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Larry has in the last week or so started to get up for the day at 3am saying he’s been awake most of the night. He sleeps a good deal of the day and he may be awake most of the night. I think he sleeps more in bed then he thinks he does.

As for bowels I’ve been using stool softeners on him as well with intermittent success. Seems thing are getting back to normal then he is off again. Am having to adjust the laxatives to keep things soft but not too soft.

It’s an endless battle.

Karynleitner
Karynleitner in reply to Jeff166

Thank you. Yes it sure is an endless battle. I try hard to take things in stride, but something always has me worried or stressed. Thanks for the help.

JubileeRanch
JubileeRanch in reply to Jeff166

Hello Jeff166

My husband has gotten up at all hours of the night insisting he needs to shave or shower and dresses wonders around and then undresses gets back in bed then gets up and does the whole routine over again....he says he is scared of the dark???

Was Larry ever exposed to any toxins? I am trying to see how many on here have had exposure like my husband? Bob was fine until he used a commercial only Herbicide for a prolonged period of time with no protection....after 3 months of doing this every weekend at our ranch he began to have balance problems and now we are in full blown PSP.....I am filled with anxiety so unfair to him after a life time of work he retires and this happens....

Any of you reading this that have had your loved one exposed to chemicals of any kind however long ago please let me know, I am sure there is a link....we have no recourse because Bob used zero protection but the Dr.’s research can make giant steps in the right direction if they know the source....as of now there are no answers for this thing!

Jeff166
Jeff166 in reply to JubileeRanch

Larry grew up 5 miles south of Pittsburgh PA surrounded by steel mills and coal mines. His parent grew up there as well. No idea how much toxic materials he was exposed to or ingested. He told me he had no idea streams and rivers weren’t suppose to be orange until he went to college in Michigan. I’m sure environmental pollution played a big part in his getting this disease. His father exhibited neurological symptoms as well. I only figured that out after I started to read what they were. His cousin who live 10 miles from him developed something called primary lateral sclerosis. She has since died. Herbicides are very dangerous. I only use them as a last resort sparingly.

Hidden
Hidden in reply to JubileeRanch

My dad is in the final stages of aggressive PSP and has worked with toner fluid and photocopiers all his life. A colleague who joined the same company with him back in the 1960s also has PSP. I had thought that it is the exposure to the chemicals that has triggered this disease.

JubileeRanch
JubileeRanch in reply to Hidden

I believe with all my heart that chemicals cause this problem in most possibly not all of people suffering from PSP...

We bought a Ranch that had belonged to my in-laws years ago, we had always loved it and finally it went up for sale and we were able to get it.

My husband Bob began to clear brush and decided to poison cactus himself instead of hiring someone, he got a license to use horrible deadly stuff and began spraying cactus on a weekly basis for months (there was a lot of it)....he did not wear a mask or protective clothing.....even though he was told to!!! Within about six months he began to complain about his balance being off.....he then had trouble concentrating and forming his thoughts. He has been to 2 of the top Neurologists in Texas, he has had 6 MRI's which all came back normal...finally I insisted he get a PET scan and there it was 3 small spots on his right frontal lob! He went to the Brain Center in Dallas and that is were they diagnosed him with PSP.

I told every Doctor about the poison to no avail, they just don't buy it! My belief is if a poison will kill something organic then it can potentially kill us or at the very least cause a desease.

We have done tons of detoxing and homeopathic supplements of which I do believe have helped him.....he is going into his 6th year and still eats well, goes for walks and goes to exercise with me (he is not as vigorous as he used to be) and is doing remarkably better than most on this site with the same timeline. He has a very hard time forming his thoughts and trying to communicate but for the most part he is hanging in there.....he does not drive, that I hate because I get tired of it.

He has had a few falls that is something I really try to watch, when he gets up from a chair I stand in front of him with my back to him, he puts his arms around my waist and I pull forward and he holds on, we laugh about it!

He is 69 and in pictures he looks like the picture of health. Communication is the big thing for him.....he does seem tired a lot which is sad because he was so active before.

To make this long story shorter.....YES, I think chemicals are totally to blame for my husbands problems!

I hope this is helpful...

xoxo

Hi can’t comment on the sleep thing, as everyone is so different. But as for the bowels, yes Colin has now lost his ability to be in control of his bowels, can no longer push a poo out, just have to wait for it to come out by it self, often it happens when he is turned, as Colin no longer can sit or move much he is in his hospital bed 24 hours, another muscle not working.

Love and hugs

Helen xxx

Thanks . Is Colin able to sit up in the hospital bed? Can you tell me what events led to him being bed bound. Dan is getting more difficult to transfer . When we move him to a wheelchair it is tough because he does not bend well to sit. We use an electric Stand Aid ( 2 person transfer) and have been told if/when that does work we’ll need a Hoyer lift.

The constipation is now worrying me. It’s always something with this disease. Everyday a new stress.

Best of luck to you. Sounds like your life is challenging to say the least.

The most amazing lady I know (my mom) was named Helen. I lost her five years ago. She was almost 98. I am also blessed with an 8 year old granddaughter named after her.

Thank you again.

Sorry for the loss of you Mum I lost mine 3 years ago, tough time.

Colin now can’t sit up, 6 months ago I was able to transfer from bed to commode with stand aid, but almost overnight he could not bear weight in his legs so became very hard, we decided not to have a hoist although it was offered, Colin didn’t want it.

So now he is in bed all the time, cannot move himself hardly at all, cannot hold things, no controlled movement in his arms or legs. He has quiet a lot of spasms and has pain in his ankles, heels, shoulders and now neck.

As for constipation Colin has that, I give him extra laxatives everyday, loads of drinks, lots of fibre but still comes out hard, it’s more muscles not working than constipation I think as he cannot push it out anymore, just have to wait for it to appear.

Love and hugs to you, hard times

Helen xxx

It does not sound good. I worry about not moving Dan as when he does not sit up, he get more and more rigid. In bed he just cannot seem to sit steady, He tends to slide. I put the feet up etc, it’s weird. Does he talk? How about eating and swallowing? I hope Dan does not have pain. We can often only tell by his facial grimaces. Sometimes he will make noise when his arm is bent etc, but rarely.

I hope you have help, support and love around you. This disease presents challenge and it’s sounds like it’s trying to kick your bum. May each new day give both you and Colin a renewed strength and peace. 💜

Yes Colin can still talk although slurred still understandable, and he can still eat and swallow, luckily as he enjoys sweet foods, only thing that gives him pleasure now.

Love and hugs xxx

I recall Kevin’s post regarding food and the wonderful pleasure and even memories it can spark. Thanks. I’m overwhelmed and information is very comforting.

💜

Cwolpe
Cwolpe in reply to Helen119

Thanks for sharing this. As unpleasant as it is I thought I was going nuts. I started noticing it about 3 or 4 weeks ago, but my siblings who help with caring for her well 1 says they noticed it and our brother I think is just in denial. Hugs and prayers to you and your husband.

Helen119
Helen119 in reply to Cwolpe

Xx

My husband had trouble with his bowels for last 2 years of his life he was still able to stand and would sit on the toilet for a couple of hrs and keep standing up and sitting down with sweat poring off of him all over , we eventually controlled it with Laxido. Got a little too loose towards final few months , my daughter told me it was better out than in .If I can call it lucky he hardly ever woke me at night he’d sometimes go to bed at 6pm And not get up until 8 am , sometimes he’d want to go back to bed as soon as he’d been showered and fed I tried not to let him if possible , but he end up sliding onto floor to and after getting him up few times I’d give in and put him to bed where I knew he was safe

Karynleitner
Karynleitner in reply to lindaD_

It sounds like he passed before the disease progressed to the late stage. When they still want to move and fall it is a very frustrating and scary life. I’m very sorry for all you both went through. It’s tough.

💜

My Mum did use a combination of a bulker, Laxido and a softener, Ducosate but that was a capsule which she found hard to take and she now has a tiny pill, Bisacodyl and Laxido. It's not perfect but works enough at the moment.Have you spoken to your Bowel & Bladder nurse, they may have some suggestions to help.

Good luck with it, bowels are so tricky aren't they, not to go too far one way or the other.

Karynleitner
Karynleitner in reply to AJK2001

Thanks. I am in the US. We just have one general nurse.

She suggested medication which I will do now , it I am concerned because his stools are not hard. If he starts getting diarrhea will will be difficult. I cannot move him alone from his life chair during the day. He already has serious problems with pressure sores and if he has bacteria by his bum that would be awful.

I appreciate your positive response to my post. This is not something I ever thought I’d be posting about.

There is no subject off topic. Thanks for keeping it real.

Tim xx

Thank you, Karynleitner, for opening this topic. My husband is somewhere on the late-early to early-middle stages (my clumsy description) and he takes Ducoset daily. For the past month he has also had bouts of diarrhea and we are trying to figure out why. My thought is that this is just the confused muscles, but maybe there is some other reason. I'm in the US, and just learning the medical help that might be available. I have not heard of a Bowel/Bladder nurse here.

Sally

Hidden
Hidden

It's not pleasant subject but it's our reality as well.I give my husband Clearlax every morning.His bm are always loose and we have a few days where nothing happens but it's way better than constipation.Miralax or its called GaviLax, GIALAX, GlycoLax, Smooth LAX, Vita Health.I had doubt when emergency doc told me to use it but it has been working well.

Dee

My John is the same I say he is on the cusp, when I think what he was like just six months ago, but you just have to take each step thrown at you and try to find a comfortable way around it. His constipation has developed over the last four months, we have tried what the Dr prescribed, Laxido sachets, but couldn't find the right balance, also John won't drink water as you know you need a glass full. I have introduced a teaspoon of linseed mixed in his cereal also plenty of fruit and veg, although he says very little, which has helped, but still not regular, I don't think they can be with PSP, unfortunately he gets the feeling of wanting to go several times in a day which I have to take him to the bathroom, to no avail, nothing but violent wind, (apologies) which is very exhausting for both of us. He also sleeps a lot (thankfully) bed at 7 pm and up at 8am, and always snooze through the day, he can talk quietly but not a conversation. we try to enjoy each day together but we're both scared what's next, our bedroom is gradually filling up with apparatus. Our children have booked a 3day family trip away in a disabled cottage to be together over the Christmas period, I'm sure they think it might be the last, but I especially is so looking forward to the family break.

wish you every love and strength, keep up the hugs xxx Jean

Thanks Jean, I think you are right all around. I’m happy to hear of Johns sleeping schedule. I am very happy Dan seems to sleep all night. By early evening he is very tired. I hope you have a wonderful stay with your children over the Christmas season. It sounds great .💜

Hi, I read your post and the replies. I’m kind of speechless with what to say bc it’s too real and sad, but mostly it’s frightening. Depending on how much sleep us caregivers have had it can be downright frustrating and very overwhelming. As I write this I’m trying to breathe and stay somewhat sane. Your post helps me to focus and review symptoms. Recently we added stool softeners to the nightly cocktail and this seems to have helped. Prior to your post I had not convinced myself that this was a symptom. Now I know. Thank you for posting. I have so much to learn!

You are right. I’m feeling very similar. My biggest frustration is never knowing what’s best. Sadly, my husband lost his ability to communicate early. I have now given him a mild stool softener (half dose ). I think it may be a good solution.

So glad everyone is here for support .

A suggestion concerning weather or not he sleeps, you might want to get a “Nest” camera and set it up in his room, you can look at it anytime on your phone....they are very simple if you have wifi.

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