My Husband has MSA and I can’t find any forums about this horrid condition
Sometimes I need to compare notes as I feel so Isolated
Any help finding a group will be appreciated
P.s I love reading your posts but feel the need for more specific info / chat on MSA
I joined this group when we thought hubby had PD
Much love to you all
So sorry to hear that you’ve been feeling isolated with your husband’s condition. MSA is a type of Parkinsonism so I’m sure you’ll receive support here on the forum from those that can relate to your husband’s symptoms.
For additional support and for some neutral but informed discussion about your personal circumstances, you can always give our helpline a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
You can also speak to a local adviser which you search for via our search tool here - https://www.parkinsons.org.uk/information-and-support/our-support-services
I hope you find this helpful.
Hello have you tried the msa trust? Link above. It may be the type of support you are looking for. I wish you and your husband well and hope you get the support you need.
I’ll have a look
When you get time, I would be interested to know if this site has been useful to you. I only know of it not had occasion to use it but it looks like it could be a good resource or starting point at any rate.
The MSA Trust Forum is a useful source of support [https://www.msatrust.org.uk/forums/]. There are also varous Facebook based Groups mainly based in the USA.[ MSA Coalition; Cure MSA;Defeat MSA; PSP etc etc]. These are either open or closed groups [which you need to join to access the posts]
Hope this helps you