PSP Association

This is not a 5

My sweet Thomas was given the news on 11-11-11 that he has PSP. We feel like a train has ran straight thru our little world. I am glad I found this blog. I think I have read anything and everything on the internet that I could find on this horrible disease. We are still in shock.....still absorbing.

I am glad this forum is here......thank you

7 Replies


So sorry to hear of your recent diagnosis. I hope you have people around you supporting you. If you are not already known to physio or occupational therapy I suggest you speak to your GP about getting referred as soon as possible. You don't have to go through this on your own. We have all been there and know what you're going through. Please feel free to ask anything - you'll ALWAYS get a response!

Take Care

Love to both of you

Kathy x



here for you. my dad was diagnosed in 2009 after lots of different thoughts about what his failing capabilities could be down to. there's lots of help out there - my parents have seen lots of people and are getting very good care.

all the best

fran and family


Hi there

So sorry to hear your news. I know "exactly" how you are feeling right now. When we were first told my hubby had this dreadful illness, it took us quite some time to come to terms with the diagnosis. We both felt so very, very angry for a long time.

The anger will subside as you slowly begin to come to terms with the illness and I am really pleased that you have found this site. All the people who blog on here understand how the illness impacts on your life and if you just want to rant on here or ask questions, whatever you want to do, there is always somebody "listening" on this site. Always remember that you are not alone. We all understand.

Try to stay strong and love to you both at this very difficult time.

God Bless................SuzieQ xx



What an awful time this is. We were told my husband had Parkinson's at first - that was bad enough. Then, two years later it was changed to PSP. I will never forget how shellshocked we both were back then. Like Suzie, we cried a lot and were angry; full of dispair and grief for months.

One day, however, you will tire of that and you will want to fight back. When you feel like this, just read, read, read, as much as you can. Build up as much information on PSP as you can; become a bit of an expert and then put it all on one side, for later. Things don't usually happen too quickly but in gradual stages then settle (or plateau) for a while. If you know what MIGHT happen then you will be ready for it IF - if it should - and amazingly you do learn to adapt and accept things. Remember, no two people are the same.

Kathy is right, check what help can be obtained through your GP. Sadly you do have to find most of the information for yourself in the beginning but, once you start the ball rolling, everything else seems to fall into place.

YES it is a very scary time as we all know, but knowledge is the answer. Do stay in touch with those of us on this website. We are all here to help one another. PSP/CBD is usually a long journey and with our help, hopefully YOU WILL learn to take each stage as it comes.


Maggie x


Hi,I'm so sorry to hear your news. As others have written, the diagnosis comes as a devastating shock, but also for us there was a relief as well because it gave a reason for the strange things that my husband was doing.

Do follow the advice of the other bloggers and start getting the help of the physiotherapist, occupational therapist, speech and language therapist and we have also met the community nursing team, even though, at the moment, we do not need their help. We felt it was better to meet the team before any emergency arose.

The PSPA has been very very helpful to us and certainly supported us during the early stages following diagnosis.

Remember to take care of yourself as well as your hubby.




I'm so sorry to hear about your recent news. We all know how hard it is to absorb such information.

Every situation is different but we are all here to support and help eachother as best we can.

I wish you all the luck and wishes for this journey



Hi to you

I am so sorry to hear about the diagnosis. Its not an easy condition to deal with and I hope you get the help and support you need from people. You need to look after you as well as it can become all consuming particularly as the person you love will have good and bad days which can be an emotional roller coaster. We are here to listen and help and the PSP Association and the information they provided was one of the biggest helps for me when I first found out dads condition.

Take care and keep in touch with us all.

Love Lesley x


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