Still Running: A decade living with Multiple Sclerosis: Giving Back, Not Giving Up

The Rustic Riders Are Born

Following my diagnosis, I tried to become as educated as I could about current research and treatments for MS. I became a member of the National MS Society, as did my parents. They provide information about current research, stories of personal struggles and triumphs, and strategies for handling all sorts of MS symptoms on their website and in their quarterly publication, Momentum. Local chapters provide support groups for individuals with MS and their families, and educational opportunities for people wanting to learn more about the disease. While learning about all of the resources available to us, my mother discovered the Bike MS fundraiser.

The Bike MS fundraiser in Eastern NY at the time was a 2-day, 150 mile supported ride through the foothills of the Adirondack Mountains. It was the perfect fundraiser for several reasons: 1- I had done a 5 day, 270 mile ride in 2000 to raise money for Huntington's disease and fell in love with road biking. 2- While my legs were still a little "lazy" sometimes (one foot would drag a little when I walked or ran), I could still clip into my pedals and ride as though nothing was wrong. My parents, my boyfriend Steve, and I decided to form a team.

To form a team for the MS Bike ride, you needed to decide on a name for the team. Being ever critical of anything my parents said, I nixed all of their ideas (even though I didn't have any good ideas to offer). Being the outsider (of sorts), Steve came to the rescue with the name "Rustic Riders". We had a team! Several other family friends joined us in our fundraising efforts and through phone calls, letters, coffee houses, and some door-to-door we were able to raise a lot of money for the National MS Society.

Now it just so happens that my parents had an unnamed band at the time. They performed mostly covers, but a few original tunes by one of the band members. They had tossed around name ideas for a while, but they kept getting nixed by one band member (I guess he and I had something in common...). When my parents mentioned the team name "Rustic Riders", he thought it would make a great band name. While the band changed over the years, most notably when my mother began writing and performing her own songs, the band name stuck. The Rustic Riders will be performing, among other places, at this year's Bike MS, the Hudson River Ramble.

MS Strikes Again

While training and fundraising for the MS ride, I was also taking summer classes at Geneseo. For the first time I was not living in a dorm or my parents' house. I had a tiny furnished room with a shared bathroom and kitchen. It was here that I first noticed the signs of another MS attack. Once again, I had numbness, but primarily on one side of my body. This was coupled with a change in how I sensed hot and cold. I began to have trouble telling if something was hot, until it was too late and I burned myself. I continue to struggle with this symptom now, frequently burning myself on the stove and oven. Cold didn't feel cool or pleasant (as it should have in the summer heat), instead I experienced pain. Taking a shower was not a fun experience. The little droplets cooled on their way to my skin, and when they hit me it felt like hundreds of needle pricks. Along with this irritating change of sensation came increased difficulty walking. What I like to call having a lazy leg.

Fortunately for me, I could have a nurse come to my apartment to deliver the IV of prednisone. This saved me 3 trips to Rochester and allowed me to attend all of my classes. Thankfully the prednisone worked its magic quickly and I quickly regained my full mobility. This time though, I did not have a full recovery. The sensitivity and some of the numbness hung on, and continue to this day.

It was this inability to fully recover that really struck me. I wasn't invincible. I really did have this disease and really was going to be feeling the effects of this for the rest of my life. I could have crawled into a hole of depression over this realization. But for some reason, my upbringing, my supportive family and friends, my inborn resilience, whatever it was, I chose to make the best of what was handed to me. I chose to take care of my body, stay physically active for as long as possible, and to give back to the MS community that had already given me so much support.

When it was time for the MS bike ride, I was ready, or at least ready enough. My parents, Steve and I all completed that first MS ride healthy and full of the kind of pride that comes from helping others. I think we even signed up for the next ride that weekend. The tradition of riding the Bike MS ride had begun.

I can't find any pictures from that first ride-maybe we were all too exhausted! Here are a few from the 2006 ride.