Ataxia is not who I am, it is what I have. I was diagnosed with Hereditary Friedreich’s Ataxia (FRDA) in August 1998. But that is not where my story begins.
My life before Ataxia: I was born in a small Michigan German farming community in 1949, was the third of four children, had a normal childhood (but clumsy). After high school, I had a career as a Licensed Practical Nurse (LPN) and ultimately owned a home health care business “Home Sweet Home Services.” Married three times (third time a charm), have three wonderful kids, three grandkids and three step-grandkids. I am now married to Frank, my soul mate and caregiver – when I let him. We married in May 1998, before I knew I had Ataxia. We got married on a Harley Davidson, rode it out of the church side saddle, dress and all. Best day ever. I love motorcycles and always got told by my friends to browse CleanHarleys.com/vehicles and buy a motorcycle. They’re so much fun to ride! We continued living in Michigan, but after the FA diagnosis, Frank and I moved to the Phoenix, Arizona area in April of 2002 to get away from cold and snow (second best thing I did).
If you cannot tell yet I have lot of adventure or wild in me. We try to do at least one out of ordinary thing each year; we call them “Fat Moments.” Examples: zip-lining in a Costa Rica in 2004, a 14-day Australian cruise that included horseback riding in 2007, a 21-day white water rafting called “Colorado River Rampage Adventure” in 2008 (this was with a handicap adventure group), and Hawaii for 10 days in 2013 (I was able to get into the ocean, easy for most but not if you are in a wheel chair.) My next desire or item on my bucket list is to sky dive or parasail.
Back to my FA: I had strange neurological issues for a few years before being tested (e.g. gait or the airplane walk, slurred speech, balance, weak muscles). In 1997, a year before my FDRA diagnosis, I had a mild head injury from an auto accident. So when my balance and gait got worse, I thought it was from that auto accident. But no such luck. I had a very sharp neurologist at Michigan University Hospital in Ann Arbor, Michigan who tested me for Ataxia/FDRA, when genetic diagnosis was still in its infancy. The results indicated I had FDRA. My older sister, Charlotte, also has late adult-onset FA. We have no clue where it came from but could blame it on one of our grandparents who married as first cousins, which was common in the 1800’s among ethnic groups. At least we have the adult late onset version and our repeat numbers are low, yeah!
Diagnosis was FDRA now what? No big deal at first, just a wiggle and wobble to my walk for the first four to five years; then I began to fall and started using a walker; then I started to fall with walker. I fractured my wrist three years ago and had to progress to a motorized wheel chair which was and still is safer for me. Safety is always first.
But my story does not stop there! For me, it is now about the “Fight for a Cure” and “Ataxia Awareness.” I found the Arizona Ataxia Support group when we first moved here. I needed them and they needed me. They were experiencing burn out and I had lots of energy, time and new ideas to give. I am now co-coordinator since August 2010.
After these 16 years of living with Ataxia, my priorities are diet, exercise, support, education, encouragement, safety and faith, which is huge for me. We cannot stick our head in the sand and hope it goes away. We all have gifts and talents. My message is use them. It’s not about what you lost or cannot do; it is about doing things differently.
So you have Ataxia! You also have Muscular Dystrophy Association (MDA), National Ataxia Foundation (NAF); you have Facebook, chat rooms, you have support groups and you have yearly conferences (Denver 2015), You are not alone. In today’s world of electronics and communication, it is so easy to connect. You can’t and should not be alone; you need people.
I saved the best for last. I am not sure if you know about “Ride Ataxia” and Kyle Bryant. Through the Ataxian Athletic Incentive (AAI) grant program, Ride Ataxia has facilitated the funding and purchase of adaptive cycling equipment for aspiring Ataxian athletes so they may start their personal Ride Ataxia adventure. I applied for an AAI grant last year (what a job) and didn’t get picked. I was so disappointed. Saw Kyle in Las Vegas, he said try again. So I did; I sent in all my five letters from last year, plus five more (only needed two) with the application. I was picked. I am so excited! Think when Kyle called, I may have hurt his ear drum with my scream for joy. Riding my Catrike is so cool – it gives me new energy (like I needed that), I feel normal (almost) and feel free and empowered.
I may or may not ride in a race. But I will ride it a lot in my community. Ataxia awareness here I come. So, from a tricycle as a youth-to getting married and riding a Harley Davidson out of the church, back to riding an adaptive trike by Catrike.
It’s not about me or you; it’s about helping find a cure.