I was diagnosed with MSA about a week or so ago. I am still walking (albeit unsteadily) and driving. I am very scared. Can you help me? Is there a group I can talk to to allay my fears. I have so many questions. How? When? Why? Angela
Hi Angela – Just being diagnosed I can understand your being scared and having many questions. The ones you have already “How -When- Why? still have no answers that researchers have found yet. They are learning more about MSA but these are still unanswered.
Beside this forum that John has , there are some other ones set up that you can join where you will find others who are either diagnosed with it or are carepartners to a loved one that has been diagnosed. They are shy-drager online yahoo group , it has over 1500 members on there from all over the world http://health.groups.yahoo.com/group/shydrager/ another one that has only been started a few months ago is a facebook site for those who live in Australia & NZ https://www.facebook.com/#!/groups/MSAOZNZ/ . Last the Parkinson Victoria group is involved with MSA & PSP patients and maybe able to give you pamphlets on the disorder or may know of support meetings where the patients attend with MSA – this is their link http://www.parkinsonsvic.org.au/our-services/support-groups.htm.
I’m not a patient but like John who has this site I was a carepartner to my husband Fred who was diagnosed with MSA. I also help with the SDS/MSA Support Group in the USA . Know your not alone , you have many here that understand.