I have been reading this blog for almost a year now but have never asked a question. First I want to thank everyone for the love and support they give to all of us.
My Dad is 77 and was diagnosed with PSP almost 4 years ago. He is at home under hospice care right now. Monday he suddenly developed a new problem the top of his left foot is swollen and the hopsice nurse says it's fluid. She also said his time is coming close to passing over. He has progressed very quickly according to his neurologist. I was just wondering if anyone or anyone's loved one had this symptom.
Thank you and love and prayers for everyone fighting this horrible disease.
Written by
ddspan
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Hi ddsspan - My mom died from PSP 2 years ago. I am a physician and I will attempt to answer your question. First I want you to know that my thoughts and prayers are with you in this difficult time. My mother also progressed quickly, in 5 years she went from healthy and vibrant to death. The disease took her too soon. It's just not fair.
The swelling is probably from your dad's heart's inability to pump efficiently any more. It might be directly related to the effects of PSP on cardiac muscle (since PSP disturbs the autonomic nervous system) or from multiple organ failure (if he's anything like my mom just before she died, he is emaciated) putting stress on the heart. Either way, the pumping of the heart can't keep up with the circulation so fluid backs up and pools in the extremities. This would mean it is closer to the end because fluid also pools in the lungs and affects breathing. There are drugs that can effectively treat this condition but I don't know if you have opted for no further medical treatment of your dad.
The condition is not painful.
I wish you and your family love and God's blessing in this time of sadness. We all must die, but why anyone should suffer so much is a mystery. Some day I hope they will find a cure for this dreadful disease so that others need not experience what we have.
Thank you so much for your response. I had thought that that's what the fluid buildup meant but hoped I was wrong. I think my Dad is getting ready to let go because he cannot do anything for himself -- so very sad. But again thanks for you kind and thoughtful response. This board has been a great help, even though I've just been a lurker for about a year.
My deepest condolences on the loss of your Mother.
ddsapn - My thoughts and prayers are with you during this time. I'm sorry to say that my dad had this about a month or so before his passing in his right foot. If it's any consolation - my father passed very peacefully from PSP and I was able to hold his hand when he took his last breath. As weird as it is to say this - his passing was very beautiful. He was ready and it was his time. I miss him terribly but glad that his suffering is now over. I tell my 6yr old that Papa now has his smile back, his laugh back and his legs back - - and probably has a new set of wings and THAT is a wonderful thing. Much love to you and your family and much peace to your father.
Thank you so much and my deepest sympathy on the loss of your father. It's wonderful the support and love on this board.
Darlean
My husband has swelling on his right foot and has had it for sometime the doc didn't seem concerned about it I assumed it was because he didn't move around a lot
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