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Progressive supranuclear palsy (PSP)
Brain & Nervous System | Last Active: Apr 19 12:12pm | Replies (15)Comment receiving replies
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?
Replies to "Hi, is the group leader still there? My husband was diagnosed PD in 2020 but maybe..."
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?
@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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@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.