Thank you

[Oliverwindsor]

Hello everyone, WOW, I didn’t expect a response like that. It’s so very kind of all of you to take the time to reply to my question. I think everyone seems to be in the same sort of ball park with their answers, as a result I’m no longer feeling quite as guilty asking for help anymore. As for “time” clearly that really is a ticking bomb. As the consultant said, obviously I have like you all, googled it and that’s why I asked the question. It’s so difficult when all you get is an “average” . Listening to you all I feel it’s best to simply put the thoughts behind me and just enjoy any remaining time we have left the best we can.

Thank you all again for your kind guidance.

[FredaE]

Oliverwindsor

glad we could help. thats rare disease for you - we all help each other.

any time you need a rant we are here.

You will gather that some of us are no longer carers but feel that being here means we can share hard earnd knowledge and put something back into the system and express our gratitude for the help and support given freely when we were in desperate need.

[Helenhooter]

True 🤗🤗🤗find something to be grateful for everyday. Think about what makes you feel good, going on the swings, listening to music, watching a good film, whatever 🤗🤗🤗