PSP Association
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Hello all Charlie has been worse his eating is getting bad I'm finding myself having to feed him, his feet and legs are swollen everyday. We went to the heart dr is running tests they said he may have a clot but not sure. Tomorrow he gos for an echo then we see the dr Thursday it's not from retaining water so I'm really scared. So glad I have a place to go to talk about things.

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Marg so sorry to hear about Charlie. My husband twice had a blot clot in his leg. He had to have injections the first time for about a month and had to wear an elastic stocking up to his knee.

The second time the clot went into the deep vein so he had to have a longer stocking which he struggled with and so did I. He also had to have an injection every day on the advice of his Haematologist (he also had Leukaemia). He said he was prone to blood clots. So until a few days before he died he had an injection in his tummy each day.

As for feeding him, sadly we all get to that stage with our loved ones. I know as do others what it feels like. You are not alone though as we are all here. So do what you have always done with a bit if an adjustment to feed him. If he has a blood clot they can help. I am surprised they haven't done all tests by now but suppose I shouldn't be as everything is going down the plug hole?! Or maybe it's me? I just see things happen which wouldn't have not so long ago.

Hugs to you Marg.

Marie x


My guy's feet were often swollen until I got him off sertraline. The aide massaged his feet every day, too. The swelling never came back. I hope your Charlie's problems are so easily solved, even if not the same cause. Best, ec


Sorry you and Charlie are having such a hard time, as if PSP isn't enough to deal with another illness is thrown into the equation. Ben doesn't suffer the swollen legs but his feet are often very blue, guess this is due to fad circulation from not moving around. I have been feeding Ben for almost a year now, everything puréed and drinks thickened and spoon fed. It a long hard road to tread and others barely have an idea of what is going on behind closed doors.

Sending my love

Kate xxx


Dear Marg,

I feed Charles every day. Or let him put the spoon in when I fill it. So hard.

Each PSP patient is different. We all know that anything can happen. Take care and know we are thinking about you.



For about the last six months my Dad needed help eating. Surprisingly he went along with it better than I thought he would. He did much prefer me or a favorite care giver over someone else. I got him a few tools I guess but he never had much interest in trying them. One was a round plastic device to go around a plate that basically gave it an edge you could push against. The other was a Velcro strap that has a slot for a utensil. This allows you to hold a fork or spoon if you don't have the dexterity to grip it. If anyone on thinks either would be of some help to you I would be glad to send them. I am located in the US but would be willing to mail to the UK as I see a lot of people on the site from there.

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Hope your Dr. week goes better than you think!!!! We have a Dr. week here, too. As so many do, along with PSP, my husband is under treatment for Prostate Cancer. We have bloodwork in the works and I pretty much dread the results - hope it goes better than I think!!!!!!! I'll be thinking of you :)


Sorry you and Charlie are having such a rough time. PSP is hard enough but to have something else going on, my heart goes out to you. You know you always have your PSP family/friends here for you, you are not alone. Lots of love, Nanny857xx


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