PSP - a rare disease in the family

[Fiona_McL]

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

memineandotherbits.wordpres...

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

[Jan_K]

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

[jillannf6]

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

xxxx

[Peter2]

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.

Peter2.

[Elli3]

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

[LesleyB]

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.

Love

Lesley x

[kay1]

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

[Daria]

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.

Daria.

[Fiona_McL]

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

Love,

Fiona x

[hmfsli]

Hi Fiona,

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

hmfsli

[easterncedar]

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

[kryste]

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

Kryste

[lindaD_]

yep we all relate to that from begining to end, i often wonder what happens to someone who is all alone has no one to get them to diagnoses because they dont believe anything is wrong . and then there is the fight for help we found moving from surrey to west sussex they were much more clued up on psp . well done

[kingecgberts]

I was so moved and so impressed with your talk. How brave you are to have done that. People, including medical people, have no idea what it is like to live with someone with PSP, or how hard it is for both the person suffering from it and their family. My husband has had it for six years now and the progress is very slow and yet relentless. I think of myself as an educated, sensible person but I do not think I have the courage to address an audience as you did. Your talk was so important as people do not understand and I hope it will be widely shared.Good luck with your life,

Avril.