PSP - agitation and bowel problems

[A-nnie]

Hello, my Dad is going into the later stages of PSP. We have had a horrendous journey. Lots of falls, broken bones, black eyes, UTI infections, swallowing problems, vision problems, communication, bad care, impossible multi disciplinary teams, GP's not knowing what to do, numerous hospital visits and stays, inadequate respite care, urinary and bowel incontinence. Dad has had a catheter fitted, but the issue is his bowels, stiffness and agitation at the moment. In the morning wakes up covered in poo. There is so much of it. It's everywhere! Does anyone know of any meds that can stop or at least solidify a bit more so it is easier to manage? For the agitation Dad is jot to bad in the morning but around 3 (a bit like sundowning) he gets agitated. The mental health nurse came and the g.p and they have done nothing. He can't sit still and he falls out of his bucket chair. We have to have it constantly in the recline position so he does not fall out. Anyone know of any meds to keep him calm and more relaxed? He is so stiff all the time now any advice I would be truly grateful 🙏 thanks

[Millidog]

Hi I'm so sorry to hear of your struggles. I hope others can help more than I can. But in meantime some thoughts. For agitation, is you father on any antidepressants? My husband is on Sertaline prescribed by neurologist and is calming. I think others on here are prescribed other meds so may be abke to advise. Regarding bowels have you git a Bowel and Bladder Nurse or ask GP to refer you to one for bowel advice and ask for advice on both 1. Review if any current meds may be contributing to bowel issues, many meds do cause loose stools and 2. If there are any meds that may firm stools. Also on dietary advice for helping control bowels. They may be able to refer to a dietician.

[Rose1sunflower]

So sorry to hear of all your problems, it’s so difficult and tiring to have one thing after the other.

My husband had open vowels for about 6 months. After a lot of cancelled and re-arranged appointments (from the hospital side) we got a gastroenterologist appointment and my husband was told to take flax. In some ways odd as it is given to people with constipation but it worked! Oh not having to clean that up, him and bedding everyday! Thinking of you, I know it’s hard work. Now he has faecal incontinence occasionally, or when I don’t get him to the bathroom quick enough, or when he’s waiting for a blocked catheter to be changed. Things are much better than they were. He wears pads. I think he is losing control over it but the daily loose stools are not like they were last year.

On your other point, he has been taking Sertraline since his diagnosis.

Good luck.

[Harshacceptance]

concur with all these replies.

Do you have a palliative care team engaged whether that is NHS or via a hostel?

They are very knowledgeable on all these areas.

My dad is on sertraline, I feel it’s important to be on a mood stabiliser for many reasons. It does help his mental state but also his anxiety increases his stiffness / pain / tremors.

My dad has to wear a pad as he can only be moved by carers from bed to chair to commode, he has been catheterised for over a year now.

Thoughts are with you 🙏 I understand how horrific this is.

[LuisRodicioRodicio]

Hi A-nnie!

These are our experiences about agitation on PSP patients:

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

Regarding fluid stools: Including moderate amounts of lemon juice, chocolate, bananas and rice in the diet helps.

Hug, luck and courage.

Luis