In 2005, I was diagnosed with Cerebellar Atrophy or OPCA. In August 2012, that diagnosis was changed to Multiple System Atrophy-C (by neuro-specialist in Ataxia.)
I know first hand the frustration of tracking down info. via phone….my speech is hard to understand and the listener and I are both frustrated.
I currently live in a retirement community and lead an independent life. However, MSA will progress and I want to be proactive now. I must use the internet (speech being what it is)….but I want to contact residential communities that are sensitive to needs of MSA patients.
I have no family or caregiver. I want to make some good decisions, but I’m stuck!!
Many residential places are trying to learn about MSA. Look for some that work with Parkinson patients or ALS. These will know how to handle an MSA patients as it has a little of both these other disorders. You may want to contact the local hospital to speak with a social worker, as they may be able to suggest some place for you .