Hi, I'm John

My ataxia story is more like a life story.

In 1996, my older sister was misdiagnosed with MS. One of her doctors thought the diagnosis didn’t quite fit, and research and an MRI led them in the right direction. Her and I both, out of 4 children, have hereditary ARCA1 (I was diagnosed in 1997).
At that point, there was very little information available. Everything I was told to expect was worst case scenario type stuff. Scared me s***less. Even still, I tried to live life as best I could.
In 1998, I met the woman who would soon be my 1st wife, and our son followed in 2000. By 2004, I had progressed to a point where it was truly noticeable. I couldn’t hold down a job since people often thought I was drunk. I was also married to woman who didn’t care about my health or well being unless it affected her directly and was unfit as a parent. So, in 2005, I grabbed my son and left.
Being a single parent was tough enough, but having ataxia to boot just plain sucked. We struggled to survive and make ends meet for years, but we were mostly happy.
In 2012 we met the woman who would be my 2nd wife, my son’s stepmom and the love of my life. She accepted me as I am and saw me for ME. We were married in 2014 and bough a home together in late winter of 2017.
Originally told I’d be in a wheelchair by my 30s and probably dead by 40, I’m 43 and still walking with just a cane (although that might not last much longer). I’m still progressing, but I try to keep living a happy life, focusing on the things I can still do as opposed to dwelling on the things I can’t. With the support and true love of my wife and the love of a relatively healthy son who is getting ready to begin his own adult journey, there’s not much that this ‘shaky disease’ can throw at me that I can’t face and/or handle!


Hi John. I am so happy for you that a wonderful woman came into your life. Probably the love and happiness is great medicine. Welcome! Emily

Yeah…I’ve struggled with depression my whole life because of this crap. Meeting the right person and falling head-over-heels in love…true happiness…has affected my disorder positively. And knowing that you have a partner who will stick with you through thick and thin and who will deal with new developments WITH you makes the future far less daunting.

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Hi John, welcome😊
We’re constantly reminded of how uncertain the expected progression of the various Ataxias can be. It’s good to know you’re still coping well despite what you were told😊xB

Welcome to the site John!