Hi, my name is Anne, on here, known as Heady. My husband was diagnosed with PSP back in 2013, he lost his fight with this evil disease six months ago.
I can't get involved too much, any more. I am sure you will all understand.
One thing I do want to get across, especially to those that just read and don't get involved, is how much this site has helped me.
I joined, just like you, when Steve was first diagnosed. Had never heard of PSP, consultant told us to go home and google it. That was the sum help we got from him. It went down hill from there. I fought, like the rest of you, day and night to get help for my husband. The only place I found help and support, was here. The only people who knew what we were going through, who gave advise, told me what to expect, most of all, gave me a shoulder to cry on. Basically, got me and Steve through our journey with PSP. His life was certainly helped, if not prolonged, in a liveable state, because of the knowledge I got from this site.
Even now, I am getting support. I have just had the real pleasure of meeting one of my pen pals, Sawa, from South Africa. She is over in England at the moment. We were immediately at home in each other's presence, knowing we had both been through the same wringer.
The point I am trying to get across, by just reading, you won't feel that love and support, I felt and still get from the lovely people on this site. You have to get involved, you have to be brave and answer the post, you have an opinion on. Write that post, asking the question that has been worrying you, especially at 3.00am in the morning. The very reason, they ask for a user name, is to protect your anonymity, to make it easier for you to express your real feelings, that you won't/can't tell your closest friend. Anne would never have been able to open up, admit failure, ask for help. But as Heady, I could ( God bless my grandmother, it was her nick name!) she gave me the ability to ask questions, especially the seemingly silly ones. To shout and scream, kick and rant about how crap life was. Anne, is a wonderful actress and everything is fine. I am sure you recognise that!
Please if you are like me, change your name and get on here. This site IS the only place I got help, love and support from people who knew exactly what I was going through.
You are not alone in this terrible road called PSP, there are others out there, just like you, frightened, lonely, not knowing where to turn. Only together, reaching out to each other, will you make life bearable for your loved one and yourself.
My heart goes out to you all, going through this evil journey of PSP. You can make it, you can look after your loved one, but only with help. That help is here, with your fellow carers. Please join in.
Lots of love