It’s amazing to see the adventures Frank Orlowski gets up to. Despite having an unknown Ataxia, he continues to get out and about in nature.
“Okay, this is a little weird,” I thought at the time. Must have been about seven years ago, as I was attempting to do a quick jog across the street. For some reason, though, my leg just wouldn’t cooperate by going into a running mode. Had to be some type of injury, I thought, as I’d dealt with a torn ACL for years, and had a very physical job operating a salvage/used merchandise store. Little did I realize at that time, this was an early indication of the neurological condition that would soon come to greatly impact my life.
Over the next few years, the symptoms grew and expanded – a hitch in the leg while walking, increasing imbalance, odd stiffness of the limbs, shakiness when agitated. Several doctor visits, MRIs, genetic testing, nerve conductivity tests, none of which came up with a definitive diagnosis. The only thing I knew for sure was the symptoms were not retreating but becoming more troublesome.
Balance and mobility proved the biggest problems. I went from a limp and occasional stumble to relying on a walking stick, then using a pair of trekking poles, to finally needing a rollator full time. That’s where I am now.
That physically challenging job of running the salvage store was given up soon after the noticeable symptoms began. Having a good deal of sales experience, as well as being a freelance writer, soon afterward I took a job working for a local publishing/media company. I retain that job today after five years, though my diminishing vocal abilities may put an end to that soon. Having a part-time job to rely on while combatting the effects of this disorder has, for me, been important.
A history of being active and in good shape prior to the onset of this disorder has helped immensely, too. I was able to continue my workouts at my gym, with having to modify those workouts as time, and the disorder progressed. Though it was frustrating to see my strength and abilities slip away, I know my activity level and gym work has helped quite a bit in facing this affliction, both physically and mentally.
As a longtime hiker, skier and bicyclist, losing the ability to take part in those activities was heartbreaking. Just when it seems we have nowhere to turn, a life-enhancing opportunity turns up, however. In 2018 I learned of the Ataxian Athlete Initiative, giving folks such as myself the chance to obtain a grant to get a recumbent bicycle. I was fortunate to win such an award, and for the past two years, I’ve ridden my bike throughout the country, experiencing nature and the open road, and all the enhancements to mind, body, and spirit that entails.
Perhaps most importantly, over the past few years, I’ve chronicled my journey with ataxia through posts and essays, read by those dealing with this disorder, and others. Many have told me my words and experiences have helped them deal with the hardship of living with this affliction. That, more than anything, has both gratified and humbled me. If I can, through words and actions, offer others some measure of inspiration, fortitude, and peace, well, I feel my purpose and mission in life is achieved. Thanks to all of you who’ve gained some satisfaction through my writings – your responses have bolstered my spirits, and given me encouragement.
Thanks for sharing your story Frank Orlowski!
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