I am a support group leader for psp aka supranuclear palsy

Posted by afoster80 @afoster80, Mar 17, 2016

I am a support group leader for psp aka supranuclear palsy...would appreciate any feedback, help we can use for this disease...

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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.

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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.

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

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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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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

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@1pspgirl

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

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

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

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@1pspgirl

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

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@colleenyoung

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.

Jump to this post

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

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