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Riding for Remission, Collecting for a Cure

By Katie Hawkins

On September 10 and 11, Sharon Dodge, along with her 17-year-old son and her 12-year-old twin girls, will join 2,000 cyclists on a ride along the scenic figure-eight courses of the National Multiple Sclerosis Society (NMSS), Greater Northwest Chapter’s Bike MS Ride and fundraiser. They will cross the lovely Deception Pass Bridge, take in the picturesque views along Chuckanut Drive, and experience the peace of the forests and farms of Mount Vernon, Wash.

Some of the members of Team Navy during last year's ride.

During the tour, there will be a time when Sharon Dodge’s body will tire. Her breath will become harder and harder to catch, and her legs will feel more pain with every push of the pedals. Just when she thinks she can’t go on, her head will drop, and she will see a bandana tied around her handlebars. Written on it is her father’s name, and it will give her the strength to push forward and cross the finish line.

Sharon Dodge has multiple sclerosis — a disease to which her father, Walt Rogers, a former Navy A-4 Skyhawk and American Airlines pilot, lost his fight at the young age of 48. This time, her father isn’t the only one who is missing. Her husband, or “wingman,” is in Afghanistan, and for the first time in five years he will not be riding beside her during the event. But she can take comfort in knowing that, across the world, Navy Commander Bill Dodge will be on a bike at exactly the same time. Just like her father, he is with her in spirit.

“[The weekend of the ride] is always emotional for me, and this year will be even more so,” says Sharon.

In the U.S., someone is diagnosed with MS every hour. It is an unpredictable disease that affects the central nervous system, which interrupts the flow of information between the brain and the body. Symptoms range from numbness and tingling to blindness, and even paralysis. In other words, it stops people from moving.

There are four different types of MS:

* Relapsing-Remitting — clearly defined exacerbations (episodes of acute worsening of neurologic function) followed by partial or complete recovery periods and are free from disease progression. This is the most common form of the disease.

* Primary-Progressive — a slow but continuous worsening of the disease, with no distinct relapses and remissions. There may be minor improvements.

Riding in tandem on a long ride.

* Secondary-Progressive — an initial period of relapsing-remitting MS, followed by a steady worsening of the disease with or without occasional exacerbations. About half of those who start out with relapsing-remitting are diagnosed with secondary-progressive within 10 to 20 years of the initial diagnosis.

* Progressive-Relapsing — a steadily worsening disease from the onset with subsequent acute exacerbations, with or without recovery.

The Pacific Northwest has, for unknown reasons, more people diagnosed with the disease. Data shows that MS occurs with much greater frequency in higher latitudes (above 40°) away from the equator. For example, Washington state lies between the 46° and 49° parallel and has an estimated prevalence rate of 180/100,000 persons. States closer to the equator, such as Florida and Texas, have an estimated prevalence rate of 68/100,000 persons. Researchers are currently studying the role of Vitamin D, environmental factors and genetic predisposition.

Although MS is not directly inherited, studies indicate that genetic factors may make certain individuals susceptible to the disease. Unlike her father who suffered from primary-progressive MS, Sharon was diagnosed with relapsing-remitting MS in 1996. She struggles most with fatigue. She is an active person, which helps, but has learned to understand her limits.

“During last year’s Bike MS Ride, I got into an accident because I attempted to push too hard,” she remembers. It was raining hard on the second day of the event, but her crew, Team Navy, wanted to continue through it. They rode up to the Burlington Northern train tracks, which were extremely slippery because of the rain. “My front tire slipped, and people say they saw my helmet bounce off of the rail. I was unconscious for seven minutes and had to go to the hospital. After that, I learned to listen to my body.”

According to Maureen Manley, a pro-cyclist who has been riding for 20 years with MS, this is the most important thing to do if you are cycling with the disease (see sidebar).

Bill and Sharon Dodge.

400,000 people in the U.S. and 2.5 million worldwide are affected by the condition, and so far, a cure has not been found. However, fundraisers like the Bike MS Ride brings a remedy one step closer to becoming a reality.

“A friend of ours gave a prayer last year before we started, reminding everyone how powerful a group can be when they join together for a cause,” says Dodge. Team Navy fluxes between 20 to 25 participants annually, and since their first tour in 2006, has continued to grab the highest pledge average award per cyclist. Excluding this season’s pledges, they have brought in over $200,000. In order to be eligible to ride in Bike MS, participants must raise a minimum of $250; to join Team Navy, members are required to secure at least $1,000.

Their contributions have certainly made a difference. In 2010 the Washington Bike MS Ride garnered $1.5 million. The goal this year is $1.75 million and $2.12 million Chapter-wide to support more than 12,000 people with MS and 72,000 others affected, including family, friends and caregivers throughout Alaska, Montana, and Washington. The Chapter, which expanded a year ago to include Alaska and Montana, now holds three Bike MS Rides annually, one in Billings, Mont. (Aug. 27-28) and another in Girdwood, Alaska (Sept. 10-11), in addition to the Washington event.

“Coming together [with Alaska and Montana] allows us to pool our resources and offer better access to our programs and services, whether in a rural area or a metropolitan city,” explains Rosanna Snyder, communications manager for the Greater Northwest Chapter. “We strive to give everyone the same experience no matter where they are.”

During the last 65 years, the NMSS has been at the core of virtually every major breakthrough in treating and understanding the disease. Since the society’s founding in 1946, it has contributed more than $721 million to advance research. Approximately 66 percent of its revenue comes from special events like the Bike MS Rides, and that money has funded innovative research that has helped accelerate the development of new disease modifying therapies to slow the affliction’s progression.

“Money raised now will go toward research that will help to stop disease activity and prevent further progression, restore all function that has already been lost to nervous system damage and to end MS forever by finding a cure,” says Snyder. The goal of the national research initiative launched this year is to raise $250 million by the end of 2015.

To get there, some serious fundraising must be done, and those participating in the Bike MS Ride are ready to contribute. The event includes individual riders and teams. But why bicycling events?

The family of Team Navy.

First of all, cycling is an excellent way to exercise for those who have MS. Maureen Manley explains that it helps with proprioception and improving balance, as well as with the nervous system. But it isn’t just the health benefits of the sport that gets people excited about joining.

“Cycling reaches those who are disconnected from MS. It has an appeal because it is a challenge,” comments Snyder on the combined 150-mile ride. “People can train and prepare, and when they come they meet and hear the personal stories of those with the disease. They walk away feeling connected, and they keep coming back. That is why we have amazing growth. People start as individual riders, come back forming teams, and the teams keep growing.”

Some groups have more than 100 riders. Several corporate companies put together squads for team building and camaraderie, as well as to make a difference. Though donations are always accepted, some may want to actively fundraise online.

“There are a lot of reasons to get involved — whether it is to boost company morale, or to ride for a loved one,” says Snyder. “People walk away understanding the prevalence of MS in our region, and they feel like they helped.”

People can even participate as virtual riders if they aren’t able to physically be there. Virtual riders, just like their active counterparts, still register, are given their own personal fundraising page, and if they choose, can join in by riding a stationary bike or cycling at the same time as the event but in a different location.

Bill Dodge will be doing just that at Camp Phoenix, a NATO/Joint base near Kabul in eastern Afghanistan.

“The base doesn’t have enough space to ride, so I’ll be using a stationary bike,” says Commander Dodge. Because of the 11-and-a-half hour time difference, he will be pedaling from 7:30 p.m. to midnight, accompanied with a bandana to remind him of his wife back home. He will also be raising money for the event on the military base, and even doing some recruiting.

“My good friend has a sister with MS. He doesn’t know it yet, but he is riding with me,” jokes Dodge, who will return from his one-year unaccompanied tour in January. But even though he laughs, he seriously admits that he will be missing home.

“There is no place better to ride than the Pacific Northwest,” says Dodge. And of course, it is difficult to be away from his family. “The separation is hard. I’m hoping this will be the last time I leave.”

Sharon Dodge also hopes that she will be the final member in her family who will have to cope with this disease: “I really want to be sure that my kids do not sit in a neurologist’s office and hear, ‘You have MS, you have the same disease your mother had.’ It’s not a good thing to go through. I want to spare them that.”

It is fundraisers like the Bike MS Ride that help bring researchers closer to a cure and to prevent this conversation.

On event day, the first wave begins at 7:30 a.m. and the course will close at 5 p.m. The organization provides six full meals, generous amenities, stocked rest stops, and festivities with music and a beer garden at the end of the day. Everyone is welcome to come support the riders. Registration is open until Friday at 8 p.m. on site, and pledges are collected until a month after the ride has concluded. For more information, visit www.bikewas.nationalmssociety.org.

Biking with MS: Advice from Maureen Manley

The number one thing you must do when cycling with MS is to listen to your body. This is a key factor that should be taken into account when following the points below:

- Safety. The first thing you should ask yourself is how well you can balance. MS often affects proprioception. Get the right bike for you — whether it be a mountain bike because the wheels are thicker, or a recumbent bike with three wheels.

- Set Goals. Start small by riding on a safe trail. Next, set some goals for yourself in terms of time spent on the bike or distance, and work your way up. If you exhaust yourself right away, you won’t want to get back out there. Success builds off of success. Take note of how long it takes you to recover after a ride. This will let you know if you are ready to speed up or increase mileage.

- Keep yourself cool. Humidity can lock in heat and raise core temperature, which is difficult for those with MS. Use ice packs on your neck during water breaks, pour water over your head — whatever you need to do to cool down. Also, try to exercise in the morning when it’s cooler outside.

- Take time to recover. After an exacerbation (or what Manley calls an “MS Smackdown”), take a few days off. When you feel ready to get back out there, ride slowly and for shorter distances. Manley admits that it usually takes her about 3 to 4 weeks to get back up to speed.

In motivational speeches, Manley discusses what she believes is “The Path of a Champion”: Act, Reflect, Adjust, and Act Again. Tune into your body, recognize your limits, and you will improve with time.