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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1pspgirl | @1pspgirl | Dec 22, 2024

I just got diagnosed after having what I thought was Parkinson’s so I’am a newby

wiens1 | @wiens1 | Dec 26, 2024

I use to run marathons, play in my garden now I have to use a walker to get around . We moved from the country to the city. We live in canada

wiens1 | @wiens1 | Dec 26, 2024

In reply to @1pspgirl "I just got diagnosed after having what I thought was Parkinson’s so I’am a newby" + (show)

Do you mind if I messenger you. You are in the trial up at Mayo Clinic in Scottsdale.

wiens1 | @wiens1 | Jan 6 6:09pm

Yes I am are you a person in the trial
Tha
I could talk to.

wiens1 | @wiens1 | Jan 6 6:11pm

Yes that is me use to run marathons now I need a walker to get me around

wiens1 | @wiens1 | Jan 6 6:15pm

What do you wan my walking is terrible. I fall down all the time my speech is bad and my handwriting is unreadable.

rockwood | @rockwood | Mar 30 10:34am

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?

SusanEllen66 | @SusanEllen66 | Apr 7 12:52am

In reply to @rockwood "Hi, is the group leader still there? My husband was diagnosed PD in 2020 but maybe..." + (show)

@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.