PSP Association

still rambling on

Hi everybody, it's been months since I posted here. That's partly because I've found it difficult to be here too much, and partly because I'm not sure that I've had anything to say about PSP that hasn't been said.

But, that's not the point is it? It's ok, here, to say whatever is in our heads. We're all affected by PSP, we're all dealing with it, we're all facing the impact it's having on our lives. None of us wanted or planned to have this intruder, this thief, in our world.

My mum's PSP journey is over, but we're still living with it. Quite literally; I've been doing a wee bit of volunteering for the PSPA, so there are boxes of PSP stuff in the house- information packs, print outs, diary dates. Soon, I'll be taking over hosting the NI display stands and material- my family are beginning to wonder if there'll be room for them in the house :) Next week, I'm going to be giving a talk at a training event for nurses- the children can almost recite it by now!

As you'd expect, I have good days and bad days. Days when I get blindsided by a tv programme or a shop. Days when I'm fine. My mum died on 5 July: 5 August and 5 September were rough; but I didn't notice 5 October. Somewhere, I stopped counting the weeks. I didn't expect that.

Some links to things I've written on my personal blog- a day that went surprisingly well, and a really rubbish day. We all have them.



My thoughts are with you all, even when I'm too much of a wimp to be here.

Fiona x

6 Replies

hi fiona

i have been wondering how u r/

hang on in there = yoru mum was so dearly loved by you i know that!!

love jilll


Hi Fiona

Wonderful words both above and in your blogs as always, right from that very big heart of yours. Glad to see you back here, we've missed you and you're a million miles away from being a wimp :)

Good luck with the talk at the training event, let us know how you get on.

Keep your chin up and most of all take care of yourself

Lesley x


Hi Fiona,

Lovely to hear from you again!. Good luck with your talk :-)

3 months is still early days - take care of your self!


Kathy x


Hi Fiona, don`t leave us,you are a special person ,you have seen this through and are still learning how to cope,those of us who are still on the journey need people like you, and you are making a difference,good luck we`re behind you, lv Elli xx


Hi Fiona

Good luck with the training and your volunteering for PSP.

We do need you to stay with us! I can so understand the half n half feeling. I have thought about that too. Mum is gradually getting worse and I am still on antidepresants but coping. Part of me thinks when the worsed happens (which I know it will) I never want to hear the word or talk about PSP again....but the other half says 'get out there and share our experience, plug and raise awareness because there nust be thousands of people who are unaware that they have PSP'

Your blogs and comments have always encouraged me and given me strength..thank you!

I pray you will get stronger every day and know that through your experience and so sad, you are helping so many.

Jan xxx


Hi Fiona

I haven't read your blogs before, but you sound as though you are doing amazingly well. My Dad passed away in May 2010. It has got easier, I haven't cried for a while, but that doesn't mean I don't think about him every day. I'm a bit like you and haven't been brave enough to read the blogs, when I do it brings it all back, so I understand. I made a muchloved tribute for Dad the day after he died, it kept me going in the darkest days, but funnily enough I can't visit it as much as I find it upsetting, but I just feel happy knowing it's there. It was my personal tribute to him. Good luck with all the hard work you are doing, your Mum would be so proud of you. Best wishes, Nicola x


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