Help with advice

[AnneandChris]

Hello there

Whilst our PSP journey ended some five years ago I still keep in touch.

When you post a query, it would be most helpful if you could put the country where you are at the bottom of your post. This is because what is available to PSP patients varies from country to country and some replies, which might be relevant to the USA perhaps are not to those of us in the UK, where we have our wonderful but beleaguered NHS.

I hope this makes sense

It's a tough journey, but keep on keeping on

Anne

[Tippyleaf]

Hello Anne, I check in occasionally- like you our PSPA journey finished nearly 6 years ago. Good to see you still contributing - hope life has treated you kindly

Sending lots of love Tippy xxx

[AnneandChris in reply to Tippyleaf]

Hi Tippy

Yes, I'm fine, especially after two new knees in six months last year. Really beginning to feel the benefit so who knows where I'll go this year!

Hope you're still keeping well. I still haven't really got used to this new existence, but onwards and upwards.

Sending lots of love to you too. Anne xx

[Heady]

Hi Anne, lovely to see your name pop up again. Glad you are doing ok. Life does go on, whether you want it to or not. I’m happy and settled now, although there isn’t a day goes past that I don’t miss Steve.

My love to everyone on this terrible journey called PSP. Please remember to get every bit of help you need. It’s not failing, it’s exactly the opposite. Oh, and “Ditch the guilt”

Sending big hugs all round, especially to you Anne.

Lots of love

Anne

[AnneandChris in reply to Heady]

Thank you AnneYes, I know what you mean by missing our loved ones. Last month was full of anniversaries, so a bit hard.

Take care, Love n hugs

Anne xx

[WifeLilyRose]

I was so pleased to see the 3 contributions above from names I remember. My husband died from PSP in 2022 and I feel I learnt so much through trial and error while nursing him at home until the end. As a kind of legacy to him, I am very happy to share any useful knowledge I learnt over his long journey. He was finally diagnosed in 2020 but that's a whole other story! I live in the Greater London area. XX