Being the voice for Mum this morning

[natalie304]

I wrote on here a few weeks ago about the frustration of trying to get my mums neurologist to listen and make the obvious diagnosis. I am currently waiting to go in to see him with her in outpatients. Today, I need to be strong for her. The gradual, progressive and degenerative symptoms continue (although rather more hastily than gradual). Several people and other doctors have identified with the PSP research and can see the changes so blatantly in Mum. I hope I can have the courage to be her voice this morning and try and help her in obtaining the help she so desperately needs, all i ask is that we are listened to today, its not too much to ask right?? Love to you all x

[jillannf6]

hi natalie

i realy feel 4 u

yes you r strong and hope u get tthe dagnosis

it is not hthe end of the world

i got the diagnosis dec 2010 and am still here

smiling - not all the tiem

is her gaze afffected?

and r her eyes closing?

is she falling /balance?

and can she clap 3 times/

ALL these helped m to get a diagnosis

love jill

[Kathy]

Good luck, Natalie! Do let us know how you get on xx

[natalie304]

Hi. Thanks for your comments. Gaze is affected, her left eye closes a lot, have never heard of the 3 claps thing... she can't stand at all now, she used to fall several times a day, and walked almost like a drunken swagger. She is now wheelchair bound full time as she fell in autumn 2010 and fractured her ankle, requiring surgery and a 5 month stay in hospital. This morning was brief, but I did push for her to be taken in for neurological obs, and yet more tests (another scan and spinal fluids). This will happen in about 6 weeks and they will keep her in for a few days. Another neurologist is also going to see her. I was shown her latest scan this morning and her cerebellum has shrunk significantly. There is obvious damage. it all remains a mystery but I. thank you all for your support and I will make sure I am present throughout her forthcoming stay in hospital xx

[SheilaN]

I was sorry to read your frustrations. After extensive tests the key feature of my husband's symptoms which convinced the neurologist that he has PSP was the inability to look down without moving his head. As simple as that. The neurologist should know that because that is what characterises PSP, it's what the name refers to.

Take care

SheilaN