From riding a tricycle to a Harley to a trike
Mary Fuchs, Special for The Republic | azcentral.com 7:38 a.m. MST August 17, 2016
(Photo: Mary Fuchs)
Ataxia is not who I am, it is what I have.
I was diagnosed with Hereditary Friedreich’s Ataxia (FDRA) in 1998, but that is not where my story begins.
I was born in a small Michigan German farming community in 1949, the third of four children. I had a normal childhood, if a bit clumsy.
After high school, I became a nurse, owned a home health care business, married three times. Third time’s a charm. I have three wonderful kids and grandkids.
My husband Frank is my soul mate and caregiver – when I let him. We married in May 1998, three months 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.
After the diagnosis, Frank and I moved to Chandler in 2002 to get away from cold and snow. Second best thing I ever did.
If you cannot tell yet, I have lot of adventure or “wild” in me. We try to do at least one out-of-the-ordinary thing each year, we call them “Fat Moments.” There was zip lining in Costa Rica in 2004, a 14-day Australian cruise in 2007, a 21-day white water rafting trip with a handicap adventure group in 2008 and Hawaii for 10 days in 2013. I was able to get into ocean, easy for most but not if you are in a wheel chair. The next item on my bucket list is to skydive or parasail.
Mary and Frank Fuchs were married on a Harley Davidson.
Mary and Frank Fuchs were married on a Harley Davidson. (Photo: Mary Fuchs)
About my ataxia
I had strange neurological issues for a few years before being tested. There was my unsteady gait or the airplane walk, slurred speech, balance issues and weak muscles. In 1997, I had a mild head injury from an auto accident. So as my balance and gait got worse, I blamed it on the auto accident. No such luck.
A sharp neurologist at Michigan University Hospital 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 ataxia. 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 1800s among ethnic groups. At least we have the adult late-onset version and our repeat numbers are low. Yeah!
My story doesn’t stop with diagnosis
The diagnosis was no big deal at first, just a wiggle and wobble to my walk for the first 4-5 years. Eventually, I began to fall and started using a walker. Then I started to fall even with the walker. I fractured my wrist three years ago and had to progress to a motorized wheel chair, which is safer for me. Safety is always first.
But my story does not stop there! Now it’s about the fight for a cure and ataxia awareness.
I found the AZ 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’ve been co-coordinator since August 2010.
Sure, I have ataxia. I also have Muscular Dystrophy Association, National Ataxia Foundation, Facebook, chat rooms, support groups and yearly conferences. We are not alone. In today’s world of electronics and communication it is so easy to connect. And we shouldn’t be alone, we need people.
After 16 years 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’s about doing things differently.
And sometimes, kind of coming full circle.
About that trike
I’ve gone from riding a tricycle as a youth to getting married on a motorcycle, and now, back to riding an adaptive trike by Cattrike.
I am not sure if you know Kyle Bryant’s RideAtaxia, but the organization supports research and makes grants, including funds to help people purchase adaptive cycling equipment. I applied for a grant in 2013 but didn’t get picked. I was so disappointed. Then I saw Bryant in Las Vegas and he encouraged me to try again. I did. I sent in five letters from the past application, plus five more. Only two were required.
I was so excited when I was picked. I may have hurt Bryant’s ear drum with my scream of joy when he called to tell me.
Riding my Catrike is so cool and gives me new energy. Like I needed that. I feel normal (almost), free and empowered.
I may or may not ride in any race, but I ride it a lot in my community. Ataxia awareness here I come.
It’s not about me or you it’s about helping find a cure.
If you go
What: The Arizona Ataxia Support Group is hosting an Ataxia Awareness Extravaganza. The free family event includes craft, health and travel vendors, a silent auction, raffle, children’s activity area and local talent demos in karate, yoga and ballet. All proceeds will go to research.
When: 10 a.m. to 2 p.m. Saturday, Sept. 24
Where: Former St. Xavier University building, 92 W. Vaughn Ave., Gilbert.
More info: Email firstname.lastname@example.org.