By Julie Kiefer and Juliann Fritz
Rachel Taylor, 55, has reduced mobility in her left leg and occasional numbness in her left arm. Yet she does not look or acts like someone suffering from a chronic illness.
In 2000, she discovered she has multiple sclerosis. While on an overseas trip, she experienced dimming eyesight in her left eye. Taylor was already familiar with the symptoms of MS because, oddly enough, she and her husband Pete were regular participants in, and volunteers for the annual Utah Bike MS ride. In fact, Pete, who owned a sporting goods store at the time, was recruited to organize the first Utah tour in 1986, and has ridden and been involved ever since.
After returning home from their trip, a formal diagnosis confirmed her fears. “I remember being filled with terror because I didn't know what direction my life was going to take,” she recalled. Taylor, who had an active lifestyle – runner, biker, outdoor enthusiast – was determined to do something about her disease and also not let it slow her down.
Now with a new perspective, Taylor joins close to 3,000 cyclists the last weekend of every June in Cache Valley for Bike MS: Harmons Best Dam Bike Ride. Many of the participants ride for the fun and the personal challenge like she once did but learn more about the disease and become eager to support the cause.
“I encourage everybody to participate in this ride,” shared Taylor. “It’s great for beginners and for serious riders too. Plus, it’s the best organized ride available, and has something magical about it that will keep bringing you back.” In fact, her own Bike MS team – Team Brain , keeps growing year after year as friends share with others how they enjoyed it. In 2012, Team Brain had 60 members, including eight riding with MS.
Bike MS 2014 takes place the weekend of June 28-29 and participants have the option to ride up to 175-miles (various route options from 40 to 100 miles) over the course of the two days. The routes take cyclists past beautiful farms and mountain vistas, through canyons and into Idaho.
While it is a critical fundraiser for the Society – raising $1.6 million for MS research and local support for people impacted by the disease, it also is described as “a party with a bike ride” by many. That sentiment hails from the camaraderie felt out on the road, at the various festive rest stops along the way and back at the event’s home base, the Cache County Fairgrounds, where teams gather and camp during the weekend.
Taylor has participated in a mix of ways from riding a tandem bike with her husband and doing a shorter route to pedalling on her own and finishing her first century last year. Depending on the state of her MS – symptoms can be aggravated by exertion and summer heat, she’s training to ride 100 miles again this year and will sport a special “I Ride with MS” bike jersey. The jersey program, provided by Genzyme and MS One to One, celebrates those riding with MS while also connecting all cyclists, inspiring and empowering them to pedal a bit harder along their journey.
“For someone like me who doesn’t have MS, I look at everyone riding with MS and think to myself ‘If they can do this, I can do it too’,” explained Safia Keller who plans to ride 75 miles on Saturday and 40 miles on Sunday.
While Keller is inspired by her friend, chances are you also know someone with MS. It’s believed 1 in 300 Utahns has MS, giving the state one of the highest incidence rates in the country. The disease arises when the body's immune system attacks its own central nervous system, the brain and spinal cord. The most common sites of damage are myelin, an insulating layer that coats nerve fibers, and the nerves themselves. As a result, nerve impulses are crippled or blocked. Many of the disease’s variable symptoms – including tingling, numbness, pain, and paralysis in different parts of the body – are not immediately obvious to others.
“Many patients do quite well, and can continue working at their jobs and participate in a bikeathon. Others accumulate physical disabilities over time and may end up in a wheelchair,” said John Rose, M.D., an MS specialist and professor of neurology at the University of Utah. He noted that what is often most difficult for new patients is the unpredictability of the illness.
MS results from multiple causes which may help explain why the disease's course can vary widely between individuals. Though the causes are still unknown, there are clues that will help researchers to one day determine what they are. Women with MS outnumber men nearly 3 to 1. It is most prevalent in people of northern European descent, and is more common in northern locales far from the equator. “There are clearly environmental factors involved,” said Rose. “Susceptibility to MS is also due to numerous genetic factors.”
With so many different factors at play, MS can be a difficult illness to treat. Today, there are 10 FDA approved drugs – the 10th just approved in March – that can slow or stop the onset of new symptoms. One patient may respond best to drug A, and another to drug B, or to a combination, but there are many with MS for whom currently available drug therapies are ineffective. Money raised through Bike MS helps to fund research toward new therapies for alleviating MS as well as programs to help people manage the symptoms of MS.
“If you can’t ride, sponsor someone who is,” says Taylor. We are making real progress through the fundraising we do at these events. In 2000 when I was diagnosed, I had only three options for an MS therapy and all of them injectibles.” In just the last three years, the first oral treatments were approved by the FDA adding to the MS treatment arsenal. “That’s real, measurable progress, and it’s making a huge impact in the quality of life for so many of us with MS.”
Taylor's motivation for riding Bike MS has changed from when she first started riding. “Before my diagnosis, riding the tour was about physical achievement. Now it's spiritual, physical, emotional – the works.”
For more information:
Bike MS: Harmons Best Dam Bike Ride
June 28 – 29 2014
800-Fight-MS (344-4867), #2