MDF Magazine Issue 61 April 2020 (2)

People
“How Muscular Dystrophy Changed my Life”:
A Diagnosis that Led to an Incredible Cross-Country Journey
By Jon Olson
Originally published online by
The Muscular Dystrophy Association
21 August 2019
but by the time I was 50, my steps had become
heavy, my footing less sure, and my hands had
become so weak I struggled to open a new jar of
peanut butter or mayonnaise.
I thought I had arthritis and went to see a hand
doctor. He did a simple test — spreading my
index finger and pushing it toward the others,
while I pushed back. It closed immediately. I
could not resist it. In the parking lot of the hand
doctor’s office, I had the frightening thought
that maybe all my ailments — hands, feet, the
increasingly gravelly character of my voice —
were connected. I felt instinctively that this was
true but didn’t know how it could be possible.
In May 2019, Jon Olson set out from Astoria,
Oregon to bike across the US. He’s
dedicating his miles to MDA, the research and
care it supports, and the community it — and
Jon — represents. So far, he’s raised more than
$10,000. He’s ridden more than 2,500 miles and
has about 1,000 left to reach New York City.
I first felt the effects of muscular dystrophy when
I was in my 40s, almost a decade before I had
a name for it. At the time, I was working as a
journalist and was building an office in my
garage, a place where I could work from home
without interruption. In putting it together —
studs, insulation, drywall, electricity, heat,
internet — I sometimes had to hold a hammer
with two hands to pound a nail. And, clenching
a tool, I often found it hard to open my fingers
to release it.
The hand doctor referred me to a neurologist.
The neurologist confirmed my fears. He said I
had muscular dystrophy — myotonic dystrophy,
to be specific, affecting extremities: fingers,
ankles, throats. I said, “But I want to ride my
bike across the country!” — the ne plus ultra of
long-distance riders, the thing you want to do,
just to prove you can do it.
The doctor said, “Well, you better go now,
because you’ll never be stronger than you are
today.”
I’d led a pretty active life. I’d played hockey and
baseball as a kid. I biked to school and back,
and then got a better bike and went farther. After
high school graduation, I rode, fully loaded, with
two friends, from Seattle to San Diego, 1,800
miles in 28 riding days. And every year for many
years I logged thousands of miles in day rides
and bike-camping trips throughout the Midwest.
I trained for and competed in two marathons,
22