Hi, my name is february29!I have a condition calledMultiple System Atrophy which is very isolating
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february29
Community member Posts: 3 Listener
It’s similar to Parkinson but very debilitating. There is no cure and little medication that helps.
Comments
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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! -
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.
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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
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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 CoordinatorConcerned about another member's safety or wellbeing? Flag your concerns with us.
Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it. -
No option to move as this condition means I’ll be bed bound soon.
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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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