Living with Ataxia

This summary that I wrote in 2014 describes life with a diagnosis of sporadic cerebellar ataxia, prior to things progressing to a probable diagnosis of multiple system atrophy in 2016.

Living with Ataxia (2014)
Hello, my name is Hazel Freeman. I am a 71-year-old grandmother. I have lived in Silsbee, Texas, since 2003. My husband, Paul grew up there, and as he says, "graduated from Silsbee High School in the dark ages." His parents were T.C. and Minta Freeman.

I expected to be one that climbed on the roof at age 102, I was so healthy for my age. Now, thanks to ataxia, I can't even walk across the room without help.

I first noticed the effects of ataxia 3 years ago in 2011. In January 2012, it had gotten worse and I took some bad falls. I then went to the doctor. I was diagnosed that summer after MRIs, blood tests, and seeing an ENT to rule out ear problems. I went from walking using a cane to using a rollator (walker) in November 2012. Now, it looks like a wheelchair is in my future.

Paul says I am drunk all the time--even though I do not drink alcohol. Ataxia affects the cerebellum, which is the part of the brain also affected by alcohol when someone drinks. It causes staggering gait, slurred speech, bladder incontinence, and peripheral neuropathy, among other things.

One concern about ataxia is that one can choke on water or one's own spit. I understand that sometimes a thickener is added to water and other liquids to keep people with ataxia from choking. So far, this hasn't been a problem for me. Also, until recently, my speech wasn't slurred too bad except when I was tired. It is getting harder and harder to talk, and especially, to be understood. Probably the thing that frustrates me most is not being able to write or print. Apparently, this is common to ataxia. I like to take notes and make lists--now I can't do either.

Depression is usual among people who have ataxia. As my small motor skills have been affected and the disorder progresses, I have been somewhat depressed over not being able to do things I have always done. For instance, I love to cook, and recently we decided that Paul needed to do most of the cooking for us. It's fortunate that he can. It is also fortunate for me that he is such a patient caregiver and cares so much.

There is no cure or treatment for ataxia. It is something to be endured, and therapy and life adjustments can help you cope. Someone on the Living with Ataxia site recently described it as walking on a boat that is going over waves. It makes you tired just to do ordinary things because it requires extra effort to keep from falling. Ataxia, while it is a rare disease, affecting 150,000 or fewer Americans, is often a hereditary disease, affecting young people and children. It can be caused by a stroke or head injury, or be a gluten reaction, or, as in my case, the cause may be unknown.
Be aware of ataxia, and remember some people are dealing with it day by day and minute by minute. Do what you can to help researchers find a cure or treatment for this condition!