Any Cure for PSP

Is there any cure for PSP? My father was a professor and a very active person, but when he was diagnosed with PSP 4 years ago he changed alot. Lots of falling, and injuries. Now he can not walk, talk, .........

His situation is getting worse everyday. It is very bad to see him like this. If you know any treatment for this desease please let me know.

15 Replies

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  • hello anna bella im afraid its not good news to give to you but there is no known cure for psp im afraid but you never know something might just turn up out of the blue sorry to be the one with the bad news \\ im sorry about your father mate but keep YOUR HOPES UP like the rest of us with psp SYNDROME \\\\I HATE THAT WORD DESEASe YOU NEVER KNOW so keep your chin up and keep smiling i also have psp but will not go into that take care best wishes to your father peter jones brisbane australia

  • Peter did u know the definition of a syndrome = a term to cover our ignorance. And there is so much ignorance about PSP isn't there? Maybe as just as u write one day something may just trun up but not a drug in a trial that is not then available ene to thosehot took part in the trial & appeared to get some beneit like the recent one Davinda (?sp). Terrible thing to do to those people IMO marytea in Perth W A

  • well marylea of perth wa we have got to have hope have'nt we and i do know what the word sydrome means it means concurrent syndrome in diease combination oif behaviour etc but i much prefer the word syn drome to disease \\ i to have psp i was first dxd with motor neurone told to go home and get my affairs in order because i had just a few months to go

    well two years went by and i was still around im glad to say them they said i had parkinsonism which went on for a few more months so i have been on this journey a fairly long time and i know the dificulties and what it does to people with this syndrome but it wont be world shattering news when i go i had never heard of it before like so many of us\\ im sorry if i trod on your toes mate \\ i hope not\\ i do not want to offend anyone as we all have enough to get on with i just remain as cheerful as i can in the situation i find myself in all the best toi you and yours marylea petrer jones queensland australia

  • no toes trodden on here Peter - they are aussie toes so tough ones! I was diagnosed Dec 13 - 2011 ruined Christmas/NewYear did not exchange greetings with people as felt not like doing it. Had been ?motor neurone Disease in 2004 then seen by rheumatologist as ? knee replaceent but getting inflammatoryu responses to everyting - this specialist ? early parkisson so went back to Neurologist of 4 years ago. He did another MRI result not motore neurone disease nor parkinston but PSP which u know now is a clinical diagnosis so depends on skill of neurologist. He has me on sinemet + motiium for nausea due to it. I could not tolerate the 6 tabes he wanted only 3/day. specialist neuro nurse is in touch + OT from geratira city centre & have been well served by them. My GP is very good too. Regards marytea13

  • no toes trodden on here Peter - they are aussie toes so tough ones! I was diagnosed Dec 13 - 2011 ruined Christmas/NewYear did not exchange greetings with people as felt not like doing it. Had been ?motor neurone Disease in 2004 then seen by rheumatologist as ? knee replaceent but getting inflammatoryu responses to everyting - this specialist ? early parkisson so went back to Neurologist of 4 years ago. He did another MRI result not motore neurone disease nor parkinston but PSP which u know now is a clinical diagnosis so depends on skill of neurologist. He has me on sinemet + motiium for nausea due to it. I could not tolerate the 6 tabes he wanted only 3/day. specialist neuro nurse is in touch + OT from geratric city centre & have been well served by them. My GP is very good too. Regards marytea13

  • hi anna bella

    i am afraid there is no treatment at all for psp

    i am in the UK

    i was dxd dec 2010 and am 66 now but htink i have the "slow" type as i am falling 5/6 times dialy but am itll her eblogging wiht my dyslexic typign!

    lol jill

    :-)

  • hi jill hows it going i think i must have the slow version of psp to mate i fell over yesterday but that was my own fault i had a bloke cut some trees down and i thought i would give him a hand to clear the stuff away it must have been wishful thinking but never mind we live and learn im 76 years young and i will get to many more yet \\ ive seen your re;plies popping up now and again its been interesting

    keep em coming mate and dont worry about your dyslexic typing we all understand best wishes to you and yours take care peter jones brisbane australia

  • hi peter

    i know my typing is gettign worse

    but as long as i am still abel to use the computer / ro ipad i shall do so!

    gadyou have the slow type too

    lol JIll

    :-)

  • good on yer jill stick with it mate

  • The brain supplement Prevagen has made a big improvement in my Mom. The positive impact was immediate when she started taking it. She also takes krill oil and CQ10. Harvard University recently completed a study which showed that gait training slows degeneration for people with dementia. I can't duplicate the treadmill, harness, and virtual reality program they used for the study. I am saving for a Second Step Gait Harness and will use their 14 day trial to see if it helps Mom. I plan to keep her upright and using her legs as long as I can find a method.

  • I am in India.Last July I was diagnosed as having PSP.The doctor told me that there is no medicne. I fallbackwards My eyes closes a nd I have neck pain , which agravated

  • Thank you all for answering my question. I pray for you to become better each day.

    My father was diagnosed 4 years ago. At the beginning he had falls, and his speech was blur, now he can not move and talk. He lost a lot of weight, and has problem eating, he has caughing a lot . He is 78 years old. My mother is taking care of him. I am living in another country, so I am worried all the time. I hope they can find a treatment for this as soon as possible. Wish you all the best.

  • hi annna bella

    no treatment at leas tmeans no side effects like all teh parkinsons drug s seem to have

    lol JIll

    :-)

  • hi Jill your right no treatment means no side effects ]\\\ i was tried on madopar i did not have any side effects but it never done any good either but i hear that is not much good in the long run \\\but still breathing and checking the flowers from the top of the ground which is a bonus take care keep writing in mate peter jones queensland australia

  • Hi Everyone,

    Sorry I don't have any real answers for you but in my experience (as carer), I found that Sinemet made very little difference but Topiramate did help with the shaking (not everyone gets). Viscotears is a must to help prevent the eyes from getting too dry. If you suffer from excess saliva try to avoid Hyoscine Patches - they can cause hallucinations and there are other liquid drugs which are far kinder (sorry can't remember the names though) ..... and finally, Amitriptyline - this was recommended by our PSP Nurse, but it isn't suitable for everyone - it helped with sleep and mood mainly. Unfortunately my stepdad had the full works of PSP and it was quite aggressive too, we tried virtually everything offered, but very little worked - still the answer is out there somewhere and someone will find it!

    Take care all x

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