PSP Association
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PSP - a rare disease in the family

Hurrah! I did it! I was anxious and there were tears, but it's done. I did a talk for nurses and other health professionals at a training event on rare diseases. I'm relieved to have done it, and glad to have done it- if our experience can help anyone understand what PSP means, then it's a good thing.

If anyone is mad enough to want to know what I said, it's here


Now I feel I need to lie down in a darkened room for a while :)

All best wishes to you all, and many many thanks for all the support and encouraging words- it means such a lot

Fiona x

11 Replies

Well done Fiona, read it and it was my life and Mums too, so much the same.

Ann would be really proud of you...just as we are here.

Thank you, your 'little' bit is a MASSIVE help! Take care

Jan xx


hi fiona

good for you!

your mum would be so proud of you!

i wiah i had a daughter and 1 just tike you

love jill



Hello Fiona,

Well done on giving your talk. I was very moved when I read through it, how brave of you to do it. The more publicity to the health care professionals the better. Thank you.



Hi Fiona, well done, I`m sure your heart rending experience has left you raw, you`ve made a big move, one step in the right direction, your mum will be proud of you, lv Elli


Well done Fiona, you did really well and it must have been very hard, but now there are a few more professionals out there aware of this terrible illness.You are an inspiration to us all.


Lesley x


Fiona, you deserve all the accolades, "one small step for man" we are all proud of you.


Well done Fiona. Just read the full thing and it brought a tear to my eyes.

Your mum would have been proud. What an inspiration you are.



I'm blushing here!!

Thank you for all the support. We all just find our own ways of muddling through, don't we?

I can't sing, or organise events like Lesley and others can, so I'm trying to do what I can do :)


Fiona x


Hi Fiona,

Well done! A beautiful and honest account that cannot fail to move.



Dear Fiona, you are probably not looking at this site anymore, but I just came across your post, and I would like to repost it, if you don't mind. There is so much there that we all are experiencing, and I think it would be helpful for others as it is now to me. It is beautifully written, and so clear. May I copy the link to a new post on the forum?

Thanks, easterncedar


Reading your story about your mom it was as if I wrote the story about my Aunt Bev thank you for sharing and God Bless You



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