Team Brain: moving past adversity
by Julie Kiefer
“We are the new generation of Multiple Sclerosis. Some of us master black diamond runs, mountain bike races, river running - anything that keeps us moving. We keep moving because we still can,” said Jane Bjorklund. Standing by her side were four others with the disease – Ruth Flanagan, Simon Hanrahan, Katrina Lund, and Rachel Taylor – who, together with 50 others, comprise Team Brain. Along with 158 participating teams, Team Brain helped garner $1.5 million for Utah Bike MS, the National Multiple Sclerosis Society (NMSS) Utah state chapter’s biggest fundraiser. About half the money will go toward MS research, and half toward programs and services to benefit Utahns affected by MS.
Team Brain, a unique mix of patients, clinicians, researchers, staff, friends, and family, was honored at the 31st annual Dinner of Champions held on September 16 at the Grand America Hotel, Salt Lake City. Organized by the Utah chapter, the gala celebrates local civic and sports luminaries. The team, which had more riders with MS than any other, earned the Living with Hope award for exemplifying the importance of a supportive network for staying active.
Co-sponsored by University of Utah’s Brain Institute (BI) and Clinical Neurosciences Center (CNC), Team Brain reflects the collaborative philosophy of its academic counterparts. The BI and CNC each gather scientists from various disciplines to research and treat neurological disorders, respectively.
MS is a major research focus of the Brain Institute, which holds education seminars on the disease and creates awareness through groups like Team Brain. “One of our governing philosophies is that researchers need to interact with the community of patients and the community at large,” said John White, Ph.D., executive director of the BI.
Facing uncertainty
What’s striking about the Team Brain members with MS is that none of them fit the stereotype of someone battling a chronic illness. They are healthy, physically fit, and strong.
“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., BI investigator, and CNC faculty. Also a world-renowned MS-specialist, Rose treats three of the team members with MS, and leads clinical trials in which the other two take part.
MS arises when the body’s immune system attacks its own central nervous system, the brain and spinal cord. Resulting damage can cripple or block nerve impulses, producing variable symptoms including tingling, numbness, pain, and paralysis in different parts of the body. In early stages of MS, about 85% of people experience attacks intermittently, while the minority undergoes a steady worsening of the disease. Rose noted that what is often most difficult for the new patient is the unpredictability of the illness.
Oddly enough, Taylor, development director for the Utah chapter, volunteered with NMSS years before learning she had the disease. She started biking with the tour when her husband, who managed a sporting goods store, was recruited to organize the first Utah Bike MS in 1986 (then called Utah’s Best Dam MS Bike Tour). Soon she became a top fundraiser and an organizer. Neither had previously known anyone with the disease.
On a fateful day nine years ago, Taylor experienced dimming eyesight in her left eye. A formal diagnosis confirmed her fears. “I just remember pacing around my yard filled with terror because I didn’t know what direction my life was going to take.”
Today, her symptoms include numbness in her left arm, and reduced mobility in her left leg. “I often have survivor’s guilt because there are so many with MS that aren’t so lucky. Before my diagnosis, biking the tour was about physical achievement. Now its spiritual, physical, emotional, the works.”
Looking ahead
MS results from multiple causes, which helps explain why the disease’s course can vary widely between individuals. Although the causes remain a mystery, there are clues that will help researchers to determine what they are. Women with MS outnumber men nearly 3 to 1. MS is most prevalent in people of northern European descent. The disease is more common in northern locales far from the equator. The latter two elements combine to give Utah one of the highest incidence rates in the country, estimated at 1 in 300. “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 six FDA approved drugs that can slow or stop the onset of new symptoms. One patient may respond best to drug A, and another to drug B, or a combination of drugs. There are many with MS for whom currently available drug therapies are ineffective.
Rose conducts clinical trials to test and compare new medicines to treat MS. “Each time we get a new drug, we can treat a few more patients who could not be treated before,” explained Rose. New treatments may also benefit patients who do not respond fully to currently available medications, or who suffer unpleasant side effects.
“The exciting thing about working in MS research and having the disease is that I’m looking at what will be the next generation of medications.” Upon learning she had MS, Bjorklund became a certified clinical research coordinator, and now works with Rose at the CNC. “MS could take a path over the long term for which I might need that new line of therapy.”
Rose receives the largest funding from NMSS of any researcher in the state. The largest private funder of MS research worldwide, NMSS also finances BI investigator Andrea White Ph.D., FACSM, research associate professor of Exercise and Sport Science. “The Brain Institute and NMSS have common goals to help the MS community,” said president of the Utah chapter, Annette Royle. “It’s a win-win partnership.”
Building communities
Last June 27, each one of the over 3,000 riders assembled in Cache Valley had their own reason for riding Bike MS. Some wore bibs that stated, “Riding with MS”, while others’ announced, “I ride for ____”, the blank space filled in with “my mom”, “my husband”, “my friend”. Diagnosed with MS a year and a half ago, Lund was new to the event. “It was incredible to have this big group of people with whom you have an automatic acceptance,” she said.
There is no organized MS network in Moab, where Lund lives. Bjorklund, who is research coordinator for a clinical trial in which Lund is participating, recruited her to Team Brain. Lund hoped the ride would connect her with the MS community. It did. “When I saw that Jane and Ruth and other members of Team Brain were at the finish line to cheer me on, tears started streaming down my cheeks.” Lund plans to recreate the supportive friendships she made on Team Brain in her own hometown. “The experience transforms us into better people, making us want to do more and give more.”
“Just as important as raising funds for research is the opportunity to create community,” said Jason Youngstrom, the BI’s communication and research services manager, and this year’s Team Brain captain. The team, now in its second year, has more than tripled in size, and raised over $32,000. “We’ve got patients and study coordinators who built a bond through that relationship and now have the ridership bond. It’s one strand that reinforces a relationship.”
Exercise heals
A long bike ride on a summer day can cause MS symptoms to flare by raising core body temperature through ambient heat, exercise, and stress. Many cyclists try to keep symptoms at bay by wearing a special vest to cool themselves as they ride. But it doesn’t always work.
Twenty years ago, MS patients were advised to abstain from exercise. That all changed when a hallmark study conducted at the U of U and published in 1996 showed that in exchange for a transient worsening of symptoms during workouts, patients became physically fit, stronger, happier and more proactive.
“Typically people with MS live as long as those without,” said Andrea White, an author of the study. “The number one killer is still heart disease, and regular exercise can decrease risk factors. So we should all be exercising on a regular basis.” She has biked with Team Brain for two years.
A goal of regular exercise can be easier said than done when symptoms are unrelenting. Hanrahan has felt a burning sensation in his left leg since 2002. “I never let it get me down,” he said. “I approach the pain like a bulldozer. I just work through it.” His main motivation for participating in Bike MS was the physical challenge. “I like to prove to myself that everything is still working, and that I can still do the same things that I used to.”
Taking control
Fatigue can also make exercise difficult. Andrea White recently completed a pilot study showing that during and directly after 25 minutes of moderate exercise, MS patients felt 4 to 8 times more fatigued than control subjects, and continued to feel just as tired a day later. “Think of professional cyclist Lance Armstrong, whose trainer makes him go faster and harder even though he is already tired from training,” she said. “People with MS are like elite athletes. They train themselves to cope with it.”
Six hours of sleep at night used to be enough for Flanagan. But since the onset of MS, she is exhausted and has trouble concentrating the next day if she doesn’t sleep at least nine hours. An avid skier and mountain bike racer, her symptoms prevent her from being as competitive as she used to be. “I realized that it didn’t matter if I come in last. My satisfaction comes from finishing,” she said. Nevertheless, she always pushes herself to perform her best. She cycled 175 miles – the maximum distance – at Bike MS.
At the awards dinner, the five at the podium seemed slightly uncomfortable to be honored alongside the likes of legendary ice climber Jeff Lowe, who has a condition similar to MS, and Spence Fox Eccles, head of numerous charitable organizations. Flanagan remarked, “I’m not sure I deserve an award just because I have gremlins running around my body.”
Some of their achievements are intangible, but extend lessons that are invaluable to anyone. “I hope I can show people that whether you have a chronic disease or another trauma in life, you have to take control of your own destiny,” said Hanrahan.
“If you fit in well with society despite the symptoms of MS, you can effectively slip in under the radar. Getting the award is recognition for what I’ve been through, and a chance to be a public role model.”
