Has anyone heard of a mid stage psp patient getting cachexia (chronic wasting). My spouse who was diagnosed with PSP 2.5 years ago after being misdiagnosed with PD for two years has experienced sudden loss of weight in spite of having a healthy appetite. She has lost 18 pounds in three weeks.
I know this is common in end stage PSP but my wife is at least two years from that. Is this just another example of the variability of this disease? Can this be happening already? Has anyone else experienced this. This is scaring the hell out of me.
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Dickwin
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Larry lost 50 or more pounds from January 2017 to his death a month ago. The body is drawing on the reserved body fat as the brain burns up calories trying to compensate for the parts that aren’t working correctly.
I saw the same with dad that Jeff did with Larry. Drastic weight loss in the last 4-6 months, even though he was still eating. If you can have the doctor to check for muscle mass loss, it weighs the most and when it starts to be lost the weight loss seems accelerated.
My husband Mike was losing weight rapidly and we mentioned it to the neurologist who ordered a nutritionist visit. My 6ft 3in husband was down to 146 lbs and we have managed to get him back up to 158 this week. We just added avocado and grated cheese to all meals, whole milk in the oatmeal with banana, sour cream, peanut butter. And two or three whole fat yogurts a day. But who knows if this will stick. We did find the nutritionist helpful and she understood the swallowing issues. One day at a time !
I think the weight loss starts pretty early and for my husband was pretty steady throughout. He was never a large man and didn't have a lot to lose, but I'm pretty sure that he weighed less than 100 lbs when he died. He lost weight no matter what we tried. He just wasted away until there was nothing left. It was so hard to watch and not be able to do anything to prevent it.
I would get an appointment with a dietician, they can give you tips on how to bump up calories & protein (adding milk powder to milk for drinks & cereal is a good one) and may prescribe supplements to help.
One thing we've noticed with Mum is you think her legs are on the floor but when you look they are actually about an inch above, this means her abdominal muscles are constantly working & using energy. If you try to hold your feet like this you will tire quite quickly, she isn't even aware she does it.
My mother in law always has her feet and legs moving. It's slow but they go up and down while she's sitting in a chair. She's unable to walk (unless it's to the bathroom) at this point because her feet have curved inward (and that it's extremely unsafe).
Sandy lost about 30 pounds over a period of some months. I think it was about 2.5 years ago so it was not end stages. He still had an appetite and was eating the same as always. The doctors could not give us any answers, not even the movement disorder neurologist. In fact he said that wasn't a PSP symptom. I think the doctors should spend some time reading posts on this site or st least refer their patients here.
His weught stabiluzed after that. In fact he thinks he has put on a little, probably not. He lost so much muscle mass and that has continued. He hasn't been able to stand on a scale for some time now so I'm not sure what his weught is now. He still has a good appetite.
Hopefully your wife's weight loss will stop. Don't lose hope. It doesn't mean end stages.
Thank you all for your responses. I appreciate them. There has been no changes of meds and my wife really doesn’t take anything but naproxen and vitamins. She is eating well and showing no signs of a sharp drop in functionality. She does seem a little more fatigued, but is still mostly self sufficient. This seems premature. Hoping my wife’s weight loss is similar to Sandy’s and will soon cease.
EC, thanks for your concern and for reaching out. My wife's bout with rapid weight loss ended as quickly as it started a few weeks after I posted. And in the last 6 months, she has gained weight as she lost a lot of her mobility. The Doctors could not give us any answers. They just said that probably wasn't a PSP symptom.
Everything else is going along at a fairly predictable progression. Just converted my Den into a first floor bedroom with a full ADA approved open bathroom/shower room, and not a moment too soon, as my wife was really struggling with the stairs. I am retiring in a few months to take care of her full time(which feels weird to say at the age of 56, but I know it is what she wants). I was fortunate...they gave me a nice package to walk away, and most of what we have saved for retirement was for her any way I have simple needs. My only plans for retirement is to through walk the Appalachian and Pacific Crest trails.
I am scared going into this year. We are almost 4 years since the PSP diagnosis, and about 7 years since the first symptoms revealed themselves. I am guessing we are in the intermediate stages but starting to move into advanced. Her vision is severely impaired, she is very difficult to understand, falls are almost daily, even though she is in a motorized wheel chair and a lift chair 95% of the time, and while she has not had a bout of pneumonia yet, the choking on phlegm, throat clearing and horrible coughing are a near constant now. I know the next year or two are going to be really rough. But the Covid lockdown has been a blessing because we have 3 kids in High School and College, and they are all home here with us doing remote learning. So we are surrounded by family.
How are you doing? I do wonder how I am going to handle the inevitable. You seem to have done it with grace and dignity. I can only hope that I can do the same.
Hi, Dick - Thanks for replying. You and your family are way too young for what you are going through - how terrible for the children - but early retirement seems like a good idea. I often wish I had done the same. I kept working all the way through and regret the time with him that I sacrificed. My guy's weight varied a lot, but I was always trying to keep it up knowing that someday he would need it. As he did. The choking is awful to watch and experience. Have you tried Glycopyrrolate for the phlegm?
Hiking is good. I had a week in the mountains here in Maine this fall doing day hikes with an old college friend. We had such a lovely time, beautiful views and glorious crisp weather. I am past the point of wanting to carry a pack, so day hikes suit me fine. I would like to do Vermont's Long Trail, though.
Still working, maybe another year or so I think - have to help my office through this ordeal first.
Good to have family nearby. I wish you all the best.
I know this whole thread is quite old but your recent reply deserved a reply with a virtual hug for your hard time. Having to retire at 56 to look after your wife is hard!
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I have simple needs. My only plans for retirement is to through walk the Appalachian and Pacific Crest trails. 
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