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What a Cure Would Mean: Multiple System Atrophy

Tocatlian, Patricia C.

doi: 10.1097/01.NNN.0000429048.33690.fd
Departments: Letters

Ogdensburg, NY

In “From the Editor” (February/March 2013), Dr. Robin Brey asked readers to share what a cure would mean to them ( I am 69 years old and have multiple system atrophy (MSA). Since I was diagnosed in 2002, I have lived 11 years, which is considered very lucky because the average is five years.

My legs ache at night fiercely. I can no longer walk more than three or four steps without a walker. I need help bathing and grooming myself. Sometimes it's hard to fill my days; I used to be a quilter, but since my manual dexterity is failing, I can't quilt anymore. Even writing to you is difficult.

This is not to say I want your sympathy. After all, I already have made it six years longer than expected. I think there are reasons I have lived this long. For the first seven years, I went to the gym three days a week. I take the medications that have been prescribed. My family and friends have been enormously helpful, always willing to help me.

My hope is that my letter will help raise awareness of MSA and spare others from the difficulties I have experienced.

Patricia C. Tocatlian

Ogdensburg, NY

© 2013 American Academy of Neurology