Welcomes and introductions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Hi, my name is february29!I have a condition calledMultiple System Atrophy which is very isolating

february29february29 Member Posts: 3 Listener
It’s similar to Parkinson but very debilitating. There is no cure and little medication that helps.

Replies

  • Tori_ScopeTori_Scope Posts: 5,002

    Scope community team

    Welcome to the community @february29 :) I'm sorry to hear that you've been feeling isolated due to your MSA diagnosis. Do you receive any support at all? 

    I don't recall seeing many members on here who've said that they live with MSA, but many of our members can relate to the experience of feeling isolated due to their condition.

    The MSA trust have lots of useful information on their website- are you familiar with them? They have information about support groups (in non-coronavirus times) and other helpful resources and sources of support. 

    If you'd like to chat to our members more casually, you might like to visit the coffee lounge. Please feel free to jump straight into any discussions that interest you, or even start your own.

    Please don't hesitate to give us a shout if you need anything!
    Online Community Coordinator, she/her

    Want to give us feedback? Complete our feedback form now.
  • chiariedschiarieds Community Co-Production Group Posts: 9,129 Disability Gamechanger
    Hi @february29 - welcome to the community, & thank you for joining. I hope by joining this group of some really friendly, lovely people you may feel less alone. We have many different conditions between us, yet share much in common with some of our symptoms, & how these affect us, & everyone is very supportive. For this reason I am very pleased you've joined us, & look forward to hearing from you, or seeing you around the community. :)
  • february29february29 Member Posts: 3 Listener
    Thankyou for yourwelcome . I live in Norfolk on a new estate and wish we had never moved as I cannot get out like I used to
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Hello @february29

    Welcome to the community, sorry to hear you've felt isolated but I hope the community can help ease that. 

    How long ago did you move to your new place? It's a shame that you aren't happy there, is moving again not an option?
    Online Community Coordinator

    Talk to our chatbot and give us feedback on the community.
  • february29february29 Member Posts: 3 Listener
    No option to move as this condition means I’ll be bed bound soon.
  • chiariedschiarieds Community Co-Production Group Posts: 9,129 Disability Gamechanger
    Hi @february29 - I'm so sorry to read how MSA is affecting you. I'm hoping your GP is supportive, & you are getting all the help & care needed.
Sign in or join us to comment.