I am a support group leader for psp aka supranuclear palsy

Hi @afoster80, welcome to Connect.
I'd like to hear more about your support group and your role as a leader. What kind of feedback or information are you looking for? It will help me connect you with other people familiar with this disease.

I was diagnosed on Nov 15/23
I was told no cure for the disease but I could join the trial clinic in the spring.

it hasn’t happened yet. I am Canadain and winter down in Yuma so am home now. Any ideas when the trial clinic is going to happen.

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

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 ?

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

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

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

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

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

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?