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Progressive supranuclear palsy (PSP)

Posted by 1pspgirl @1pspgirl, Dec 22, 2024

Hi my name is Kelly
I’am 66 yrs old , bI live in Florida on the west coast
I just got diagnosed with PSP
I’ve been dealing with what I thought was Parkinson’s for one year and 3 months
I’am headed to Shane’s in Gainesville
If course I’am scared and anxious and depressed. I was born on a sunny day always out side, but now i’am in the house all the time bummer , what’s my future? Anybody else have this disease that’s stealing my walking ?

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merrychristmas | @merrychristmas | Apr 19 3:37am
In reply to @SusanEllen66 "@merrychristmas I don’t know about a trial. However, I just applied for an appointment at Mayo,..." + (show)
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@merrychristmas I don’t know about a trial. However, I just applied for an appointment at Mayo, and was turned down.
I don’t understand.

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You could ask

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merrychristmas | @merrychristmas | Apr 20 8:29am
In reply to @SusanEllen66 "@rockwood PSP, yes I’m on my way for an official diagnosis myself. I have had movement..." + (show)
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@rockwood PSP, yes I’m on my way for an official diagnosis myself.
I have had movement issues, double vision too. It is not Parkinson’s, but it is referred to as a Parkinsonism Disease because the 2 diseases have similar traits.

I also have FRONTOTEMPORAL Dementia.

There are YouTube videos that are very informative.

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Are sure that you have dementia? FTD is Frontotemporal Degeneration . PSP falls under that umbrella term (also there other diagnosis ie Alzheimers, PPA etc. ). They all can lead to dementia you can live without it for a long time and can even die before you get dementia.
You already know this. 😊

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 4 6:22am
In reply to @rockwood "Hi, is the group leader still there? My husband was diagnosed PD in 2020 but maybe..." + (show)
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Hi, is the group leader still there?

My husband was diagnosed PD in 2020 but maybe two years ago his neurologist began to suspect that he might have PSP. He was even tested by a specialist who gave him all sorts of tests and watched his eye movements, etc and concluded he did not have PSP a year ago. But a recent brain scan (March 2025) indicated loss in mid brain which is an indication of PSP. His symptoms also matched 80%, including tending to fall backwards, pain around his neck and incontinence. He also has severe problem in initiating his first steps, but once he gets started he can walk a few thousand steps outdoor without a walker. Do all the symptoms sound familiar to anyone?

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Hello @rockwood,

I see that your last post indicated that your husband was not doing well, and PSP was suspected. How is he doing now? Have there been any changes in his diagnosis or any new treatments to help the symptoms?

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cartercd | @cartercd | Aug 31 9:00am

my doctor is working me up for PSP. I had a pet scan on Thursday looking for TAU cells?
I have fallen more than I want to admit to . I am going to PT but I don’t always use what the PT person gives me I have recently started carrying a cane with me or wherever I go. Yes it is scary but I never believed I had Parkinson’s, but the PSP is something I was not prepared for.

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