Is it normal for my husband to gain weight and his speech improve? My husband has been battling PSP since 2019 he is bed bound

[Robertdonna]

he was diagnosed Early in 2022

his symptoms have progressed slowly until August of 2023

At that time a medication changed caused him to pee away his potassium. He was hospitalized for 3 weeks. It took a while to get the potassium up and the results were weakness needing a rehab center for 2 weeks then released home. He began to fall even with the walker and hurt his knees and was hospitalized for 1 week after which he came home not being able to stand due to damage to his front thigh. He made it home 2 weeks and I am told the new medication has given him diarrhea. He started vomiting so back to a different hospital who shares information with the first. Potassium again dangerously low. 2 weeks to build it back up. He came home with his legs cramped and his feet twisted inward. Now he could only use one arm as the other arm was now cramped with his hand turned in. I had him home for a week and the vomiting started. I went through his medication and found the dose on one had been doubled. I cut it back and the vomiting tapered off. He has since continued to loose weight with no appetite 140lbs since early Aug. the diarrhea is Back and his muscles seem to atrophy every day more. He went back to the hospital to be rehydrated and his diarrhea treated. Home the next day. He is bed bound but with a hoist we can put him in his recliner for a few hours each day. His speech at this point he could only softly get out a word or two. The doctors put him into the Hospice program at home. ( end of life care.) Pain meds and got rid of most of his medication. This week, 4 weeks later his appetite is improving and he legs and arms are filling out. The diarrhea is only 1 time every 2 -3 days. His speech is noticeably improved although I still have to relay everything. ????????

[Bergenser]

I'm sorry to hear what your husband and yourself have been going through.I think it is difficult to generalise what is "normal" with PSP.

What you describe sounds partly like something several specialists have described - that sometimes the best option is to give less/fewer medicines, particularly when the benefits are uncertain and the side effects are troubling. It is definitely possible to rally - for a short or long time - when coming off medication that has stopped helping.

I wish you the very best, sending virtual hugs and hope 🫂🌻

[Rose1sunflower]

So sorry to hear what you both have been going through. Medication! Can be useful and harmful! My husband seems quite sensitive to medication, often resulting in rashes. He had diarrhoea for 5 months, eventually saw the gastroenterologist who suggested using flax seed. In a couple of days it worked for him. It must be tiring for you dealing with it.

[LFG3]

Hello,

I'm so sorry to hear your story.

My husband passed away from PSP last August. Such a difficult journey ! I wrote to tell you the US based PSP support group is at Smart patients.com. Then join the PSP and CBD discussion group. This group is UK based and they are a wonderful group but have a very different healthcare system. My heart goes out to you. Hospice at home was wonderful for us. So supportive and took very good care of my husband. Any questions feel free to direct message me. ❤️

[Martina_MP]

Being in a hospital bed with reduced activity/exercise can really affect even a well person’s fitness and mobility and muscles can waste away. It sounds like there was also a medication with side effects that he is doing better without. Also, pain meds reduce gut movement. That’s so nice that he is improving!