Lawrence resident Valerie Hawley isn’t a bicyclist, but she plans to ride 38 miles from Olathe to Lawrence to raise awareness about multiple sclerosis, a disease she was diagnosed with one and a half years ago at age 30.
She will join more than 2,100 bicyclists who will be participating in the “Bike MS: Kansas City” ride on Sept. 22-23 in hopes of funding a cure for the chronic, often disabling, disease that affects 400,000 Americans.
Every week, 200 people are diagnosed.
For Hawley, the symptoms began with numbness and tingling her feet that then moved to her legs.
“The whole lower half of my body was feeling that way, but I could still walk and do everything. Then it kind of moved up into my shoulder and then down into my hands and it got to the point where I couldn’t move my hands very well.”
It had been a couple of months since she first noticed the symptoms in her feet, and so she decided to call her primary care doctor who ordered lab work. Everything looked normal so she was sent to see Dr. John Clark, a Lawrence neurologist. A magnetic resonance imaging test, or MRI, showed four lesions on her brain. She had multiple sclerosis, commonly called MS.
“I was in complete shock, but my doctor was really positive and that helped,” she said.
Multiple sclerosis is an autoimmune disease that affects the central nervous system, which is made up of the brain, spinal cord and optic nerves. The disease is commonly diagnosed between the ages of 20 and 40, but can be seen at any age, and it affects everyone differently.
Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.
Clark said MS is not the disabling disease that it once was because of medications that have been developed since the mid-1990s.
“We used to see patients in the hospital all of the time but since these medications have come out, there are much fewer patients who need hospitalization and much fewer patients who are disabled long-term,” he said.
Clark said it’s critical for patients to be diagnosed as early as possible, so they can start taking medications to alleviate symptoms and help prevent more lesions. He said most patients take injections of medicine — ranging from daily to weekly. Others undergo a monthly infusion of drugs. There’s even a new pill.
“There potential problems with any mediation you choose, but as long as you are familiar with the potential side effects and you monitor them closely, then they are typically safe,” he said.
Clark said there’s a lot of research under way in the treatment of MS. “It’s pretty exciting,” he said.
Hawley takes three injections of medicine a week, and she said it’s hard to decipher between the symptoms of the disease and the side effects of the medications. She mostly suffers from headaches and fatigue. She said exercise — yoga, swimming and running — help curb the fatigue, but she can’t overdo it or the numbness will return in her hands and legs.
She said it has taken a year to understand the disease, learn how to live with it and come to peace with it. “I feel like I’m getting back to normal, a new normal,” she said.
Hawley, who works in Kansas University’s School of Social Welfare as a communications coordinator, feels lucky because she was diagnosed right away and received support from family, friends, colleagues and others with MS.
She said it helped to talk to others about the disease and her experiences with family and friends, especially about whether to tell them about the diagnosis. Hawley said she received different reactions from people. Some were suddenly scared to talk to her because they didn’t know how to respond while others called crying. “They were thinking my life was over,” she said. Others didn’t think anything of it and treated her no differently.
Last year, her husband, Theron, a firefighter in Overland Park, rode 75 miles in the Bike MS: Kansas City event, which was cold and rainy and canceled the second day because of bad weather. He also raised $1,600 for the National MS Society, which funds research and programs and services for patients, like his wife.
“She had just been diagnosed, so I rode to support her,” he said.
This year, Hawley will join him in the two-day event, which consists of several routes: 38 miles, 73 miles and 101 miles. Her longest bicycle ride has been 10 miles, but she’s determined to finish at least 38 miles.
“If I can ride, I should ride,” she said. “There are so many people so worse off than me that have MS that I have to do it. We need a cure.”
SUPPORT THE CAUSE
“Bike MS: Kansas City” is a two-day ride, Sept. 22-23, that begins in Topeka and Olathe and stops in Lawrence’s South Park where there will be a “Gears & Grooves For MS” festival from noon to 9 p.m. Sept. 22, which is open to anyone. The festival will include music, children’s activities and food vendors. On Sunday, cyclists will ride from South Park to Olathe.
There are various distances to pick from each day: 38, 73 and 101 miles. Each rider needs to raise a minimum of $200. Cyclists can ride individually or as a team.
More than 2,100 cyclists are expected to participate, and hotels are booked in Lawrence.
Event organizers are seeking volunteers. The event requires about 800 volunteers to help with a variety of tasks like serving food, loading equipment, decorating, setting up routes and monitoring rest stops. Volunteers get meals and a T-shirt.
Last year’s event, raised $1.4 million for the National Multiple Sclerosis Society, which funds research and provides services for people with MS and their families.
To participate, volunteer or learn more:
• Call 913-432-3926. To volunteer, call 816-448-2195.
• Visit bike.msmidamerica.org.
• Stop by the Mid America chapter office at 7611 State Line Road, Suite 100 in Kansas City, Mo.
• E-mail firstname.lastname@example.org.