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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, 2025
In reply to @SusanEllen66 "@merrychristmas I don’t know about a trial. However, I just applied for an appointment at Mayo,..." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@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, 2025
In reply to @SusanEllen66 "@rockwood PSP, yes I’m on my way for an official diagnosis myself. I have had movement..." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@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, 2025
In reply to @rockwood "Hi, is the group leader still there? My husband was diagnosed PD in 2020 but maybe..." + (show)
Profile picture for rockwood @rockwood

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, 2025

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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cartercd | @cartercd | Apr 19 12:12pm
In reply to @rockwood "Hi, is the group leader still there? My husband was diagnosed PD in 2020 but maybe..." + (show)
Profile picture for rockwood @rockwood

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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@rockwood hi
I was unofficially diagnosed with PSP. My neurologist is certain that that’s what I have. He’s almost 100% sure. I refuse to pay $1400 out-of-pocket for the alpha synuclein one test anyway that the whole other story but I have symptoms very similar to your husband. I’ve fall backwards. Doctor always does the pool test and he always stands behind me and like balls on my shoulders and it’s always positive I always fall. I have a good friend who is a neural ophthalmologist who tested me just unofficially and he is suspects that I have PSP. Does your husband still drive? I don’t have any problem driving except that I’ve had a couple accidents and my husband swears that I must be falling asleep. I’m not falling asleep. I tell him that all the time I’m not falling asleep. I seem to fear to the right I was on an open highway the other day and I noticed that I beer to the right. I’m having constipation issues now so I have started taking MiraLAX or Metamucil every day. My neck hurts as I lay here on my pillow in the bed. My neck hurts.. I have a hard time getting up off the toilet and I walk fine. I went to the gym yesterday and just did a few upper body exercises like for triceps biceps, etc. I’m really weak. I’ve lost a lot of strength in my upper arms when they’re starting to get flappy so that’s why I went. I hope to keep in touch with you.

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