Anybody want to talk about Progressive Supranuclear Palsy?

Hi Gene @gamesjr, while we wait for members to respond, I thought I would share these references which you might find helpful:

-- Progressive supranuclear palsy:
https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/diagnosis-treatment/drc-20355664
-- Progressive Supranuclear Palsy (PSP) Factsheet:
https://www.ninds.nih.gov/health-information/disorders/progressive-supranuclear-palsy-psp
-- CUREPSP (Foundation for PSP|CBD and Related Brain Diseases):
https://www.psp.org/.
-- Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care: https://www.frontiersin.org/articles/10.3389/fneur.2021.694872/full

I'm here! I just started looking for resources here on PSP and found this. I was just about to post basically the same thing you did.
My husband (53) was diagnosed about a year ago with PSP, while the onset of significant symptoms started about 2-3 years ago, in hindsight there were subtle symptoms for much longer.
What is your situation and experience with this disease?

Hello @anitah, Welcome to Connect. Hopefully @gamesjr will see your reply and share his experience with PSP. Have you done any research or seen the CUREPSP site listed above?

My experience with PSP is with a family member who developed vision, dizziness and balance problems which after about 2 years were diagnosed as PSP. With the exception of some falls, and problems driving a car and carrying things, he is doing pretty good.

My husband started complaining about his eyes and difficultly lighting a cigarette. He had a history of concussions going back 10 years. He had three falls that resulted in concussions, and several others over the years, but could be explained as just accidents that could happen to anyone. However, it was the issues with his eyes that started the medical tests. The eye Dr saw some concerns which were first explained by high blood pressure, after doing lots of tests on his heart & regulating his HBP (they did a brain CT which showed he had a stroke at some point & degeneration) the cognitive issues began to be a greater issue. Since his first concussion his memory was never quite the same. He was always alittle eccentric but his mood, judgement, and impulsivity started to get very strange. I thought a lot of it was mental health issues & the stress over Covid-19. He complained about his job saying "I just can't do this anymore" I thought he was just unhappy, not that he really couldn't mentally handle it. He quit his job in 2020. He started to have minor car accidents (and he was always a really good driver). He had one major one - hitting a parked car, fortunately not hurting anyone.
Due to the stroke and concussions they had him start doing PT & OT and did a driving assessment which limited him to day driving, no freeways, and only within 5-miles of the house. (He no longer drives.) They also did a nuero-psych evaluation, that led to more tests. They did a lumbar puncture & MRI it showed both the Mickey Mouse & hummingbird markers, and a neuro ophthalmologist confirmed the diagnosis of PSP. It took about a year of tests to get to the diagnosis.
He does OK, but has declined a lot since the diagnosis. He walks, but needs a cane, he has incontinence, aphasia, he struggles with technology, and has issues with executive function (knowing the order in which to get dressed for instance). I work from home sometimes and we have a PCA that comes 4hrs a day two days a week.
We have found a lot of technology to help with daily life. We have a door lock that reads his fingerprints, computer touch screen, cameras around the house so I can monitor him when I am at work. He does Zoom fitness classes - adaptive yoga and tai chi. He also does Luminosity games online. His mood is generally very good and he's cooperative most of the time.
6 months ago he could still play cribbage, but now we are more at the Go Fish! stage. I'm scared at how fast this is progressing.
I'm glad to hear your family member is still doing pretty well.

PSP “ offered”me one-day lull - just one day - Is this common to happen in PSP?

Hi, Everyone!
Some weeks ago I wake up in the morning without feeling any of the symptoms of PSP. No freezing of gait, no unbalance, nothing. I felt myself a completely new person, the way I was many years before. Unfortunately, this event only last for one single day. I will speak about this next consultations with my neurologist, next month. Does anyone of you experienced such a situation? What might be a possible explanation for this event? I’m not taking any medication from beginning of January (I suspended Sinemet and Amantadine, as recommended by my neurologist due no visible effects on my condition). Many thanks for your help and support

Hi, thank you so much for your kind support.

PSP is very rare, no way to test it, and no way to treat it. It usually starts with falling, balance problems, speech problems, memory loss, confusion, and walking problems. PSP is misdiagnosed as Parkinson’s. Is there anyone who has been diagnosed with PSP?

What is different about the two?

Hello @bentwood and welcome to Mayo Connect. Mayo Clinic's website also has some information about this disorder. Here is the link to that information:

Is this disorder something you are currently dealing with?