PSP Association
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Clinical trail

Hi everyone as some of you I have been looking for a good clinical trial for my husband Charlie he has had PSP for 11 years now. Why do they have trials if they don't benifet the one going through the study. It just makes me so up set. It's like your spouse will not get better but it will help someone else in the future. Sorry if I sound selfish but when you've been with someone since your sixteen it's hard to think I will have to say goodby one day.

Marge

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Dear Marge, I would love to hear you and your husbands experience with PSP. You mention he has had it for 11 years. Was he diagnosed early and how old is he ?What stage is he at now ? The knowledge you have would be greatly appreciated to help lead me through. Althea 💛🙏

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Hello he first was diagnose having Parkinson's that was in 2006, after we changed doctors to someone in Manhattan we learned it was PSP, he tried a lithium trial we think it did do something cause up till now he was in stage four. I'm not sour what stage he is in now but I can tell you his speech, he eats very little having trouble walking in a lot of pain and takes naps. This was a man that got up at 5:am everyday went to work on the week ends worked in the yard all day. His 68 now. We are about to move in with our daughter and son in law they want us near by. cause he has a lot falls.

I hope this helps

Marge

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Thank you Marge for your input. Wishing you the support you both deserve as you move to your family.

Althea 💛🙏

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marg,

Your grief , and love for your spouse is obvious , and I'm sure you know the answer to your own question. My wife and I are in a clinical (as we speak) and it most likely wont help her but may help the next generation that gets this most horrible condition . If there are NO white mice then there is no prospect for a cure .My wife will endue as many as 5 spinal taps, countless infusions ,blood tests, and tens of thousands of miles in an airplane . Yes' there will be lots of money spent out of pocket and there will be MORE pain and suffering on her part to merely be a participant in these trials . She will donate of herself this effort to hope that they make the quality of life for a future diagnosis w/PSP better and survivable...you must digest and understand that fact ...In this world there are givers and takers ..My wife has always been a giver ..as a human , as a teacher , and as a spouse for 46 yrs . Be glad for both these clinicals and for the givers that may benefit your kids and grand kids in the future ....jeff

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Jeff your wife is a brave and self less woman. I thank her for all she is doing for the future sufferers of PSP.

Althea 💛🙏

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Thank you.......so much for recognizing that

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So frustrating! We (they?) seem to know so little about this disease that it's the best that can be done. And it will definitely help others while maybe helping our loved ones. None of this is easy. Be kind to yourself; your feelings are understandable.

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