He has a peg tube, but also can eat some pureed foods, yogurt and puddings. Had an upper GI done, it showed nothing wrong. The tube is fine, as I suspected. It doesn't seem to matter whether he has a tube feed or takes food orally, he has severe pain. He has lost lots of weight over a very short period of time because everytime he starts to eat it hurts and he has to stop. then the pain stays with him for a long time. He says (types) that most of the time he doesn't even feel hungry. I wonder if his body is just starting to shut down, I don't know. I bluntly asked if he was giving up, he said not. Anyone have any experience or thoughts on this?
thanks, joan
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laroux
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Sorry to hear your husband is suffering pain. My Dad had tummy pain. Although his communication was practically nil, yes and no were the last words he was able to form. I asked every day if he had any pain and when the answer was yes, I would ask him to point. It was always in the stomach area. Food didn't seem to help but due to the communication I have no idea if it made it worse. Going to the loo didn't ease it, neither did paracetamol or antacids. I have no idea what caused it. When he stopped eating altogether I also asked him if it was because he was ready to give up and he also said no. Even when he stopped eating altogether he never showed any signs of being hungry or it causing him any distress at all. I hope you can get to the bottom of your husbands pain and ease it for him. xx
So I wonder then if it may be another part of this confounded disease (not really sure of that expression, maybe from my parents time) anyway I do hate to see him hurting. he only communicates through his smart phone, text to talk, or ipad. usually the doctors and nurses dont have time to wait for him to type things out. anyway, I'm glad to know he is not the only one that has had to suffer with this. not that any one should have to
Laroux, I can relate to the not wanting to eat part. My dear wife is not eating much at all these days. I've opted to only give her what she wants regardless of what it may be and what meal it's at. I think part of it is the effort that PSP patients have to go through just to eat. We probably don't realize the effort they expend because for us it's normal to eat and we think nothing of it taking time and effort. I found from experience with my first wife (rare brain disease not PSP) that you can't force them to eat, particularly with swallowing issues. It is heartbreaking to watch as they lose more and more weight in the process. It could be they are tiring of the fight plus other issues (swallowing issues, taste issues, fatigue issues, etc.). Believe me, I share your pain because I'm there at that point also. Jimbo
Thanks for your reply. Bob is in a care facility now and he text me this evening saying he was trying to eat the pureed meal they had for him, got it into his mouth,which is a struggle, but could not swallow it. The little bit he did manage to eat caused pain again. He tries to eat because that is what he supposed to do, he says he just isn't hungry, but tries and then has pain. I feel like I'm stuck behind a glass wall, where I can see everything but can't get in to fix anything.
We are in same boat. My wife has no pain but just isn't hungry so intake is low. Tough to watch as she loses weight and energy. I can relate to the glass wall. PSP can make you feel more helpless than ever in your entire life. Jimbo
hi Jim regarding your wife loosing weight ,my husband has also lost a lot of weight .he has lost over thirty kg.he now weighs sixty kg.its awful because pressure sores are becoming a big problem because he is so frail ,but what can we do!
OOPS54, Yes sores are an issue. My wife had two pop up and the Hospice nurse said to "slather" on ointment. The ointment I use is REALLY thick (thicker than tooth paste). The beginning sores went away and no new ones until yesterday. This one is in an unusual spot up high on the butt in the middle. Not where you'd normally have pressure like the butt cheeks. I've jumped on it quickly and am hoping it goes away like the others. Most over-the-counter ointments are like those for babies bottoms and just aren't thick enough to stick and stay. It is a bit of a task to wash it off but of course that means it's doing it's job. I hope you can get the sores under control. The weight is an issue because my wife doesn't eat much. Part of the is due to inactivity of course. Swallowing is slightly difficult be still working pretty good. No thickeners at this point. Keep in touch as we seem to be on similar paths. My wife started with symptoms in 2008 but we didn't know what is was. First diagnosed as PD then later PSP. I guess, best I can calculate, we are six years into this fight. How about your husband? Are you in the UK?
yes for sure he loved his food! He has had a peg tube for over a year because he couldn't chew, and was skin and bones. He could still enjoy pureed foods, but that is coming to an end also. I think his body is saying enough. not sure his mind is there yet.
Hi laroux. I'm new to this site but my husband, who was diagnosed with PSP, is also having stomach pains but he has chronic diarrhea instead of constipation. This has just started and I'm confused about what's causing this. This disease keeps throwing curveballs and I can't keep up. He's already on Baclofen. What else can we try?
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What have you found is the hardest thing to deal with when caring for someone with/ living with PSP?
My granddad had been diagnosed with PSP .He has been on syndopa since 7 months,but no benefit has been noticed.can it be stopped?
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