This crazy disease

[ckb4]

hi!… My sister was dx with PSP at age 79; she lived alone , no grown children, husband deceased for several years; she contacted me when she was in Rehab after falling and breaking her thumb after not communicating/ me for several years. She agreed to move close to me ( from TX to FL) so I could help her and we found an Asstd Living facility because she already had limited mobility… needing physical therapy , already in wheel chair…….it seems she she probably had ignored many symptoms ( and her primary care doctor didn’t recognize symptoms until he referred her to a neurologist) and was even unaware they were symptoms… as her personality had changed and depression had a hold on her….

I helped her get into Asstd Living and became her P.O.A…… this disease ‘progressed’ v. Rapidly and she is now in long term care less than a year after her diagnosis.. unable to talk, bedridden past few weeks, unable to stand or walk , swallowing issues huge but she is still eating….. this is a terrible disease that desperately needs more research and public education on it.

God bless everyone who is dealing with this!

[Independenceday]

My dad has PSP and just recently had to move him to a care facility as unable to move, needs feeding, but his mind is not bad which is sometimes not a blessing, having to explain to everyone over the last 5 years including doctors what his condition is has been astonishing. More funding is desperately needed. sending hugs 🤗

[ckb4 in reply to Independenceday]

Hi!.. thank you for response.. yes.. I’ve found no one in the health care system I had contact with had heard of this disease except the neurologist and the doctor at the long term care facility…I’m a Licensed Clinical Social Worker and had never heard of this in my career… yet everyone knows of ALS… and even then the neurologist appeared to know v little about the course of the disease ..and only sees ‘maybe 5 ‘ people a year with PSP but sees ‘8 people a day’ with Parkinson’s…

Have you heard of the ‘bird on the brain’ that definitively diagnosed PSP?… it’s an outline of a bird ( hummingbird) clearly seen on the MRI of the PSP person…I was made aware of this by a wife of a man who had died from PSP… and her neurologist had pointed this out…. My sister’s neurologist had not heard this then googled it and when he saw my sister’s ’bird on the brain’ after I asked him to show me the MRI pictures..he said it was the first time he’d seen this!.. and he has been a neurologist for probably over 30 years!!!

There needs to be much much more research and public education on this disease!!

Thank you and God bless all who are dealing with this!

[Independenceday in reply to ckb4]

Not heard of bird on the brain, but I walked in on my dad’s Parkinson’s specialist as he was talking to another colleague and heard him say Mickey Mouse, then when he saw me explained that the middle bit of the brain effected looks like the shape of Mickey Mouse’s head and showed me on his scan photo

[easterncedar in reply to ckb4]

The hummingbird shadow that appears on the brain scans is often considered proof of PSP. The hummingbird is often used as a symbol of PSP.

Without that sign, PSP is diagnosed by the sum of various specific symptoms, like fixed gaze and backward falls, , and its not responding to Parkinson’s treatments, like levodopa