My late husband passed away in 1998 after a 9 year long and horrific battle with MSA. He was 49 years of age with 4 beautiful small children and a devastated young wife. Back in the 90’s there were limited services and living out of the city, services were extremely scarce. The Neurologist was incredible to give us as much information as possible. At least now with the internet and services online, it is easier to navigate the system. Sad to see that research has still not come up with a cure as the devastation of a person’s life continues.
I am now working as a Community Liaison Officer supporting families to bridge that gap of service when discharged from hospital to home or rehabilitation.
One service that is working with Brain Disorders and Neurological Diseases is BrainLink. Check them out and add them to your directory. It’s a Statewide Service.
Suzanne – thank you for your post and telling me about BrainLink – when I get back home from my holiday, I will include a link to BrainLink and if you would like to send me some relevant information, I will happily include that as well.