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

february29
february29 Online Community Member Posts: 3 Listener
in Start here and say hello!
It’s similar to Parkinson but very debilitating. There is no cure and little medication that helps.

Comments

  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    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!
  • chiarieds
    chiarieds Online Community Member Posts: 16,807 Championing
    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. :)
  • february29
    february29 Online Community 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_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    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?
  • february29
    february29 Online Community Member Posts: 3 Listener
    No option to move as this condition means I’ll be bed bound soon.
  • chiarieds
    chiarieds Online Community Member Posts: 16,807 Championing
    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.

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