havent been on the forum for a while as my mum now has a diagnosis of Multiple System Atrophy....they described it as on of the ugly sisters to PSP, so many parkinsons plus sysndromes but all equally as horrible. This was under Prof Lees is Queen Sq, London. But I still feel as though this PSP forum and all of you are my family, I havent really connected with the MSA forum as I feel more at home here, and all the things my mum is experiencing is all so alike to PSP sufferers. MSA affects the bladder and also heart and balance. My mum had a catheter fitted this week, she has had months of bladder infection and so finally it can all get out her system, I hope. She hates it, and thats so sad to see. She cannot turn in bed now, walk unaided and falls all the time.
However ... and this is where I wanted to share our ''good'' news...she was fast tracked last week for continuing NHS health care. I am still in shock, as readin on here how difficult it is to get this, I cant believe that the district nurses managed to get it! So I wanted to say to you all, dont ever give up hope, if you are fighting for it, just keep on keeping on and asking for help. The more people you can involve the better. eventually someone will listen.
please update me how you all are - does anyone know how Heather Edmondson is??
Much love to you all
Clara (daughter of Rosemary) xx