PSP knowledge rare

[JantheNana]

During my hubby's weeklong stay in the hospital I only came across one medical professional who knew what PSP was,and that was a speech therapist.Mostly when trying to explain to them why he can't do certain things,like roll over in bed,for instance,I told them he has Parkinson's and they can understand that.Which brings up a question in my mind again-does he have both Parkinson's and PSP? For 8 yrs the DX was Parkinson's,just a year ago DX PSP.Does he have both?

[sammy90210]

Hi JantheNana - from what I know, PSP is a particular form of "Parkinson's dementia" - which means that it's a kind of dementia (a disease that progressively causes the brain to grow weak, resulting in memory loss and body function) that shows symptoms similar to Parkinson's disease, like body stiffness and tremors

If you mention Parkinson's dementia, then some doctors would understand though

[enjoysalud]

Here in the United States A good description can be gotten from the NATIONAL INSTITUTE OF NEURLOGICAL DISORDERS AND STROKE ninds.nih.gov/Disorders/Pat...

Different people exhibit different symptoms. At the end, my son could not walk unless gotten up to a walker, could not take anything through his mouth (PEG), dress himself, talk (gibberish), etc, but managed to communicate with hand gestures...the day before his death of PSP he managed to ask me (with hand gesture) if I had paid the gardener as it was the day of the month to be paid. As far as I could see, the tragedy of my son is that his mind was intact, a prisoner of his body that no longer served a purpose......except perhaps to contain his soul. My son died at just 55 years old.

[enjoysalud in reply to enjoysalud]

The web address was partially deleted....aggggg.........GOOGLE PSP and click on the National Institute of Neurological Disorders.......

[enzo501]

JAN,

It's my belief that PSP is like a resistant mutation of 70% ALS and 20% Parkinsons and 10% unknown...In reading whats available I have very basically concluded that Parkinsons 2 most prevalent symptoms are tremors and active sometimes almost violent dreams . The ALS part is where the stiffness in joints,and tearing down of the Kenisthetics of the brain muscle movements is similar . How-ever, chemically PSP and Parkinsons react so much differently to treatments ..Park reacts to drugs like dopamines and PSP reacts consistantly with nothing . I would say if your husband has tremors that he fell on the Park side . Professional medical knowledge of PSP is literally pityful and almost insulting. 5 % of all medical Drs and 35% of neurologists know of PSP ..Out of 4 patients I personally have talked to 0 were given an initial diagnosis of PSP that includes my wife of 46 yrs . Those diagnosis's changed in 2-4 yrs to PSP.Thats 2-4 yrs! not months or weeks ...Ask for a milogram from your neurologist ( a medical test with needles and tiny electric shocks ) I think it's the best tool to find this disease ......good luck...jeff

[Liz_L]

I've found that it can be helpful to bring copies of the guide to PSP for various health folk to doctors and etc. pspassociation.org.uk/app/u...

It's handy to have because I get tired of explaining things over and over again.

[shasha]

HERE IN WALES WE HAVE FOUND THAT EVERYONE FROM OUR DR .OUR PARKINSON NURSE. FROM THE PHYSIO THERAPIST TO THE OCCUPATIONAL THERAPIST ARE ALL AWARE OF PSP AND ALL THAT ENTAILS '' SO WE ARE VERY LUCKY AS WE HAVE NEVER HAD TO EXPLAIN IT TO ANYONE ... WE ONLY MOVED HERE FROM FRANCE IN JANUARY ...

[JantheNana in reply to shasha]

Amazing-wonder why we here in the US are so behind?

[rriddle]

Technically it's possible for someone to have both Parkinson's and PSP but it's incredibly rare. So the chances are not high.