Confused

[Darlingtonian]

I understand that PSP symptoms are random but I’ve just witnessed my husband pooing pellets on the floor. We’re struggling with his bladder already and he’s now on new medication, and he refuses to wear convenes, but this takes it to a completely different distressing level. Is this PSP normal?

[carehope]

Dear D , Since you didn't clarify the circumstances related to your husband's actions , I cannot address that. However. if you consult PSP. org and other sources of in depth information on how PSP can affect behavior, personality, and bodily functions , you'll find answers and reasons that I'm sure will explain what you're witnessing.

But a few shortcut facts related to PSP and bowel and bladder function: As PSP progresses , neurogenic bowel and bladder symptoms are common. From the behavioral effects aspect of PSP : disinhibition , apathy , and decreased empathy and ability to relate to others may occur. Since there is much more to PSP : possible combinations with other disorders, the interplay of personality and life experiences, and all neuro degenerative illnesses than meets the eye , every symptom requires an individualized and usually multi faceted approach . Very challenging for everyone involved !

Wishing you and your husband all the best, and I know that utilizing this site to look up topics can help a lot in your quest for answers / input related to pretty much anything related to PSP solutions /care.

This also proves invaluable when dealing with the medical community. Fact based assertiveness can help you and your husband get what you may need !

Love, Elise

[daddyt in reply to carehope]

Great summation, Elise.

Tim

[David750]

Hi Darlingtonian, this is a distressing read, I do feel for you. In addition to the valuable information you will find here, as you are in the UK, if you have not already done so please contact the PSP Association's (pspassociation.org.uk) Helpline and talk to their Health Care Navigator for your area. She will be able to give you advice on all the support available to you in your area and what the PSPA can do directly. All my very best wishes to you on this difficult journey. I lived it with my wife PSP.

[StockLover]

Hello Darlingtonian.

You have my total empathy. My husband has lost his continence recently which has affected his bladder function first then his bowel function. This has caused us both great distress and has limited where we go out greatly. Luckily we have local hospice support which includes the support of an admiral nurse who has been really helpful.

The district nurses have become involved now and a palliative nurse from the hospital who visits us at our home after a hospital stays because of bowel issues.

The hospice staff have been the professionals who have found the support we need. It is really difficult trying to care for someone with PSP and my heart goes out to you for the challenges you are facing.

PSPA are also really supportive and proactive in finding the local support that you may need.

Take special care of yourself.

[MullerRice]

I'm afraid bladder and bowel problems are both common with PSP and, through my therapist, I have recently been referred to an incontinent specialist, who is part of the same team. My problem is I take extra fibre (Macrogol/Strigol/CosmoCol) to help with my constipation and finding the right balance whether to to take 1 or 2 sachets daily (it takes several hours to take effect) is difficult and l tend to have the odd accident. Do you have access to an incontinent specialist?

[salamandaX]

Hi Darlingtonian, I really feel for you. What you describe sounds a bit like my mum when she’s constipated (the pellets). Like MullerRice mentioned mum has Cosmocol but I’m quite conservative with it as the idea of diarrhoea is worse 😬. I give her 1 sachet a day in the morning for 2-3 days and it usually works sufficiently. Last week I gave her a sachet for 2 days and missed a day and gave another and then yesterday she had 4-5 bowel movements. Luckily she’s willing to wear incontinence pants, but it’s still stressful dealing with the clean up. I know the lunchtime visit to the loo put me off eating for a couple of hours - fortunately a carer came shortly after and I went for a short walk round the block.

If you have carers coming in make sure you tell them you want to know when there’s a bowel movement and if it’s normal so you can give some medication to help when necessary. Not sure how you can get your husband to accept the need for incontinence pants. Maybe someone out there could suggest good brands/fits for men.

Stay strong. Not every day will be so challenging.

[LuisRodicioRodicio]

Hi Darlingtonian !

These are our particular experiences and informations from other caregivers hoping to be useful:

• The patient has had some episodes of constipation.

MarkJ9 point out: “The brain is unable to control the sphincter muscles. Food won't move through the system smoothly as the brain loses ability to push the food through the alimentary canal (peristalsis). That might result in constipation and also often fluid build up”.

Seleonore93 point out about the importance of following up on inconsistent bowel movement, "Patient was really trying to get a bowel movement and we were in there for 20-30 minutes and she was sweating quite a bit. Unfortunately communication has suffered tremendously from PSP. I noticed patient was having trouble, but wasn't telling me what was happening. Patient was standing up and I was asking her what was going on and patient wasn't speaking. Then eyes began to roll back and she lost control of her body and began to collapse. Patient lost consciousness and was unresponsive. We drove patient to the hospital and the doctor did a check up and determined that the collapse was because of her constipation and trying to force a bowel movement. We got a prescription for an enema and some medication to help with bowel movement.

It was quite terrifying to see her lose consciousness like that."

On our case, constipation have been corrected by applying an intensive Mediterranean diet based on fruits and vegetables, abundant liquids (In particular, around 100 c.c. liquid before breakfast- always with thickeners) and helped when difficulties by the drug Duphalac (lactulose, an oral osmotic laxative), but on some patients it produces annoying internal gases. As an alternative to Duphalac we are testing "Movicol" (polietilenglicol and various salts) which is notably more active and does not produce gases. The problem is to find the right dose per day to achieve a regularity. At this time we are trying around 4g Movicol in the morning at breakfast alternating with a doce (1 gram) of “Plantaben” (seed shells of Plantago ovata- Ispaghula husk) with success (although there are some days that do nothing that lead to days to do much). (Higher doses of Movicol (6g / day, etc.) could produced too intense effects but, over time it will be necessary to increase the dose. Yogurts with pieces of plum (at lunch) have been of special help and maintenance. Avoiding lemon juice, chocolate, bananas and rice, helps.

Keep in mind that some opioid analgesics as well as antitussives that contain codeine favor constipation.

Staying quiet favors constipation. A program of gymnastic exercises, especially walking, favor regularity. If it is not possible to walk, a walk, even in a wheelchair, always helps.

In case of not “open bowels” in 2 or 3 days, it is interesting to consider the apply a Micralax cannula (citrate / lauryl sulfoacetate) rectally or in persistent cases a lavative.

Daddyt point out: “Any constipation that lasts over 3 days becomes a serious health concern. There may be an obstruction in the digestive tract, that can lead to a rupture followed by sepsis. This needs to be investigated further. And, it may also be the digestive system slowing down due disease progression”. Ask physician.

It is normal that when the PSP disease advances the problems with "open bowls" are more complicated.

About three months ago and after living with PSP for 8 years, we perceived that the remedies that I have outlined in the previous paragraphs to achieve a regular "open bowles" begun to fail. After that, two or three times a month and despite regularly providing "Movicol" or "Plantaben" periods of two days are given without evacuation. On the third day we apply "Micralax" which generally works. If in spite of everything in three days have NOT evacuated, we apply a 250 ml "Enema Casen" (rectal solution) containing 139 mg / mL and 32 mg / mL of anhydrous sodium dihydrogen phosphate / anhydrous disodium hydrogen phosphate which, so far It has resolved the situation.

timbowPSP suggest as a good remedy: “soaked-in-water linseeds”. “For bowels 'stuck' try 2 good spoonfuls of linseeds soaked in glass of water for 12 hours (hot water speeds it up). When the seeds get gelatinous drink down part or all the mixture. Maybe not instant success, so repeat the performance, and within a day or two the crap will leave you!”

In our case when there are cases of delays in "open bowles" that result in greater anxiety and nervousness than some alleviate with infusions of relaxants or an extra dose of CBD Oil.

It could later be the reverse too as episodes of fecal incontience.

Hug and luck.

Luis