Neurodegenerative diseases

GILL 1 month ago

3 replies

Edited by GILL 1 month ago

Hello everyone, I’m Gill and I have just joined so do forgive a few daft questions while I figure out how it all works!

I have a rare neurodegenerative disease called Multiple System Atrophy (MSA). It is one the “locked in” diseases, which is to say that, on the way to the inevitable end, I can expect to progressively lose mobility, speech, control of bodily functions and more.

Sorry to be blunt, but the picture is grim! I am very aware though that I do have more time than many of you and I am grateful for that, however uncomfortable those years may be.

Is there by any chance anyone else on this forum who is experiencing something similar?

Many thanks and do take care, everyone

admin 1 month ago

Hello Gill, 

Welcome and thank you for joining our Online Community. Please ask as many questions as you like. 

We’re sorry to read about your diagnosis and all you’re going through. Knowing that you may lose your mobility, speech and control of your bodily functions must be worrying. Have you spoken to anyone about how you’re feeling?

We hope that others will see your post and share their experiences with you too.

Take good care,

Marie Curie Online Community Team

GILL 1 month ago

Many thanks. Yes indeed - lots of support from the MSA Trust. I didn’t realise myself until relatively recently that Marie Curie had a much wider remit than cancer and it would have been lovely if others facing specifically ‘locked in’ issues were participants in this forum. I will keep my fingers crossed.

admin 1 month ago

We’re so pleased to hear that you’re getting lots of support from the MSA Trust, Gill and that you recently found our forum too. 

We are aware our Online Community isn’t as active as we would like it to be at the moment. We’re currently working to improve the experience of our Online Community and would like to hear from people like yourself about what you would like to see from the platform. If you would like to share your experience and help shape our Online Community, please get in touch with us at moderators@mariecurie.org.uk – we would love to hear from you.

Marie Curie Online Community Team