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Anybody want to talk about Progressive Supranuclear Palsy?

Posted by Gene Ames, Jr. @gamesjr, Jan 31, 2023

Does anybody have or have anybody close with Progressive Supranuclear Palsy.? How does one navigate life with this?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

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rhfollett | @rhfollett | 1 day ago
In reply to @methel "@rhfollett I am glad to hear from you, but sorry that apparently the disease is progressing...." + (show)
Profile picture for methel @methel

@rhfollett

I am glad to hear from you, but sorry that apparently the disease is progressing. It is said that PSP is uncommon and its early symptoms somewhat nonspecific so that it is rarely an early diagnosis. Hopkins would be my choice for diagnosis and treatment of PSP (and many other disorders) too.

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@methel
Hi methel,

I take it that you live close to Hopkins. I asked the experts via a curepsp event how long people with psp should live. The answer was 8 to 10 years.

Rick

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rhfollett | @rhfollett | 1 day ago
In reply to @bentwood "PSP is very rare, no way to test it, and no way to treat it. It..." + (show)
Profile picture for bentwood @bentwood

PSP is very rare, no way to test it, and no way to treat it. It usually starts with falling, balance problems, speech problems, memory loss, confusion, and walking problems. PSP is misdiagnosed as Parkinson’s. Is there anyone who has been diagnosed with PSP?

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@bentwood
I have

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methel | @methel | 1 day ago
In reply to @rhfollett "@methel Hi methel, I take it that you live close to Hopkins. I asked the experts..." + (show)
Profile picture for rhfollett @rhfollett

@methel
Hi methel,

I take it that you live close to Hopkins. I asked the experts via a curepsp event how long people with psp should live. The answer was 8 to 10 years.

Rick

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@rhfollett

Yes, I live in Maryland and Hopkins is the best place for treating many different disorders.

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