Louise Estabrook – Ataxia and Me

Like everyone with a type of genetic ataxia, I was born this way! Thankfully, I wasn’t aware of it until I turned 56 years old. I was on vacation and my family went tripping blissfully down the huge staircase to the beach. Me? I was terrified because there were no handrails, so I turned back and found an elevator. When I got back from vacation, I made my first of many neurology appointments.

Diagnosis for me was a very easy journey. I was always aware that my grandmother was ill and I even knew what she had! Olivopontocerebellar atrophy, the former name of spinocerebellar ataxia. I had spoken with a long-lost cousin and he told me that he had gotten tested and he had SCA3. So when my neurologist confirmed that I had ataxia, I opted to only test for that one variant, and that’s what I had… But that was the easy part!

With no cure or treatment available, I had no recourse but to stay as healthy as possible and try not to fall! I have to tell you, this didn’t sit well with me! So I began my own approach. And I found that there were lots of things to help! First, I totally revamped my diet, eliminating sugar, grains, nightshade vegetables (like tomatoes), chemical, food preservatives, and artificial colors. I began to feel so much better!

Then I added yoga and meditation, and soon I was wondering if anyone was supposed to feel THAT good! But that wasn’t enough. I started to look for adaptive sports to engage in. Now I’ve never been one to exercise but I found that as long as I stayed out of the gym, it was FUN! I started with a therapeutic form of an old passion – horseback riding. The new version was called hippo-therapy and I loved it! I soon found other outlets and I was energized and interested in life again! I started to row crew with an adaptive rowing program. I did water aerobics in a local pool. I bought a used recumbent trike so I could zip around my neighborhood. Little kids stopped me to say what a sweet ride I had! I began an adaptive rock climbing program. Adaptive golf and boxing are new passions and I’ve rekindled an old love of line dancing, but like most of what I do, it’s adaptive for people with mobility issues. I even joined an adaptive SCUBA program and earned my certification as an open water diver! I may not be able to walk to the back end of a boat, but just watch me dive! I have found that there is no ataxia under the sea!

I did a lot of public speaking in my career. After I retired, I wanted to continue speaking, this time about ataxia awareness. But honestly, it wasn’t a very juicy topic, so I speak regularly about other topics that I am passionate about, and always manage to sneak a little ataxia awareness in! I speak about therapeutic gardening, service dogs (I always bring mine along), and adaptive sports!

Of course, there’s more than diet and exercise. I play WII and online computer games. I attend two separate Toastmasters groups; one is a speechcraft program for brain injury survivors. I’m an avid reader and I sing (poorly, but who cares?) in an online therapeutic choir. I spend a lot of quality time with my Goldendoodle service dog, Henri. He’s my best friend!

If there’s one piece of advice that I would have appreciated hearing when I was first diagnosed, it’s this: When looking for programs for you in your community, don’t restrict yourself to searching for anything that specifically says “ataxia” in the title. There probably won’t be any! Instead, look for Parkinson’s programs, MS, general neurological, or even just senior programs! They will all welcome you into their groups!

If you would have asked someone to describe me nine years ago, pre-diagnosis, they might have used the words “couch potato”. Today, that same person might use the words “adrenaline junky”.

We’ve all heard the old adage that a leopard can’t change his (or her) spots, but I’m here to tell you, that’s not true. If once my motto was a milder, meeker “who’s going to let me?”, now it’s a louder, fiercer “who’s going to stop me!”.