PSP

[Auddonz]

My husband was just diagnosed with Progressive supranuclear palsy, a rare brain disorder. Anyone here have it? If so are the meds helping at all? I did some research and they said the meds rarely do.

[jillannf6]

hi ia m jill and i have PSP AND LIVE IN THE UK

THERE AR ENO MEDS FOR IT A TALL BUT U CAN TRY COCONUT OIL; COQ10 AND TURMERIC WHICH MAY OR MAY NOT HELP

U MEED TO GET A SOCIAL WORKER ON YOUR CASE

ARE YOU SEEIGN A MOVEMENT DISORDERS CONSULTANT? THEY AR E THE BETTER OF HTE NEUROLOGISTS O\

.LOL JI;L;

[jillannf6 in reply to jillannf6]

HI AGAIN

I AM

SORRY ,MY TYPING IS SOOD DYSLEXIC NOW AS IN THE ABOVE POST BUT HOEP YOU CNA UNDERSTAND IT

ARE U IN THE UK OR UJSA?

T MAKES GOOD SENSE TO LOG INTO THE PSP SITE ON HEALTH UNLOCKED AND JOIN THE PSP ASSSOC IN T HE UK OR THE USA EQUIVALENT- THEY ARE V HELPFUL

LOL JILL

[Auddonz in reply to jillannf6]

TY JILL, TRYING TO GET A HOSPITAL BED HERE FOR HOME. THEY ARE HORRIBLE IN THE REHAB CENTER HE IS AT. DO YOU KNOW YOU NLY NEED ONE OR TWO LETTERS TO FIGURE OUT A WORD AND I AM VERY GOOD AT IT. DON'T WORRY ABOUT MY NOT UNDERSTANDING

[Auddonz in reply to jillannf6]

THE MOVEMENT DISORDER SPECIALIST DIAGNOSED HM YESTERDAY. I HAVE BEEN GIVING HIM COCONUT OIL FOR MONTHS NOW. THEY ARE RAISING THE AMOUNT OF SIMNET, SORRY SPELLED THAT WRONG, HE IS NOW TAKING IT AND HAS BEEN FOR ABOUT 2 MONTHS TO SEE IF THAT MAKES ANY DIFFERENCE.

[isis6361]

You need to go to the psp site on healthunlock as they are separate from Parkinson's. Psp is often under the label of Parkinson's but in reality they are very different conditions. Psp rarely respond to Parkinson's medications and although many Parkinson's nurses look after people with psp the progression and treatments are very different. In tbe UK there is a very active psp society,

[cabbagecottage]

we had our hospital bed through the district nurse along with a wheelchair . you might have to wait for quite a while though ,

we love inS Wales

[cabbagecottage]

Live and love . Lol

[jillannf6]

YES YOU HAV ENOW POSTED ON THE PSP SITE AND THER E R SOME REPLIES

LOL JILL

[Nettiepie]

I'm so sorry how terrible. I hope he will not suffer I will kept you all in my prayers.

Much love

Nettiepie