Newly diagnosed

[billyboy99]

I recently had a fall (june 12th) whllst on holiday. It was backwards down some stairs. Afterwards I felt ok for a whole week but then I started having pain in the lower back, considerable difficulty walking and generally getting about. Anyone know of it 's the delayed effects of the fall or something to do with the dianoses of PSP. I'm seeing the GP again next week but wondered if anyone had got comments meanwhile.

[SharonAB]

Dear Billyboy99,

My husband has had PSP for a number of years. Lower back pain is his number one issue that we have gone to great lengths to address. Tests and checks have not been able to locate as physical injury to explain. So where possible we do the best is to ensure he wears the right footwear, bedding, and seating and physical activilty to remain as agile as possible.

Basically I try not to skimp on what John uses.

For example I am physically OK and quite happy sitting on a modular lounge suite curled up and reading a book in everyday light. However for John he now requires an electric recliner chair, made the right size for his body (so he can get in & out of unaided) and and good density cushioning with a good strong reading light to do the same.

John also has the support of podiatrist, OT and physiotherapist who help John with strengthening exercises and techniques for getting in and out of bed.

But I am left wondering, PSP aside -

when any of us have a fall, the aftermath is quite often not felt to a few days later - so have you done yourself an injury to muscle and bone that needs a bit of further investigation and TLC?

Regards,

Alana - Western Australia

[peterjones]

HI BILLYBOY HOWS IT GOING IF I WAS YOU I WOULD WAIT AND SEE IF YOU HAVE ANYTHING WRONG WITH YOU AFTER YOU HAVE SEEN YOUR GP MATE DO NOT JUMP THE GUN AND GO OFF HALF COCKED AS THEY SAY WHEN WERE YOU DIAGNOSED WITH PSP DONT PUT THINGS IN YOUR HEAD THAT MIGHT NOT BE THERE MATE PETERJONES QUEENSLAND AUSTRALIA PSP SUFFERER GOOD LUCK AND BEST WISHES

[shasha]

YOU SAY YOU HAVE BEEN DXD WITH PSP ? WELL IF YOU DO HAVE IT IT IS ALMOST CERTAIN THAT YOUR BACKWARDS FALL IS TO DO WITH IT - I HAD ABACKWARDS FALL IN 2006/7 AND WAS NOT DXD UNTIL I CAME T0 FRANCE IN 2010 ALTHOUGH I DID HAVE OTHER SYMPTOMS SUCH AS SMALL WRITING AND STIFFNESS

[shasha]

YOU REALLY NEED TO GET SOME BETTER INFORMATION ON PSP FIR YOUR OWN PEACE OF MIND

[NannaB]

My husband's back pain has always been associated with his backwards falls. When he managed to go 2 months without falling, the second month was pain free...them wham! down he went again, landing with a thud on his back and once again he was in pain. He told me today that his pain has gone again so hope we can prevent further falls for as long as possible.

Nanna B

[Dordor]

Dear Biliy boy 99

I have recently been diagnosed PSP . I had a backward fall and two days after I was

getting pains in my leg and hip I also get pain in my lower back.I am due to have a cortazone

injection in my back soon.when I had the fall the doctor said did you fall backwards, so it seems to be that is how you fall when you have PSP.

good luck, DorDor