Neurology News: Raising awareness of Parkinson's and multiple sclerosis.

Neurology Now
October/November 2011
Volume 7(5)
p 21
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Marise Rinkel was diagnosed with multiple sclerosis (MS) in 1988, after developing optic neuritis (a sudden inflammation of the nerve connecting the eye and the brain) and weakness in her right arm and leg that led to several falls while running.

Figure. Ankie Nielsen (left) and Marise Rinkel (center) walking from Woodland, CA, to Bakersfield, CA, in February, 2011.

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Five years later, Rinkel and her husband, Bert, met Ankie Nielsen in Colorado Springs, CO. Nielsen was born 10 miles away from Rinkel in their native Netherlands. The two women also share the experience of living with a neurologic disease: Nielsen received a diagnosis of Parkinson's disease (PD) in 2009, after being misdiagnosed with essential tremor for four years. And in 2010, she decided to undergo deep brain stimulation (DBS).

“Tough as she is, the thought of having her brain ‘messed with’ scared her,” Rinkel says about her friend's treatment. “It made me angry that someone as independent as Ankie was struck with PD; it made me want to help her fight the disease.”

Rinkel loves to walk—with the help of her walker and leg brace—and this gave her an idea: She would walk from Northern to Southern California to raise awareness and funds for PD and MS research. Why? Well, activism is “in my genes,” she says. Her parents helped save 36 Jewish lives during the Holocaust by opening their home in the Netherlands as a safe haven. Their actions became a strong moral precedent in Rinkel's own life.

However, she admits that developing Walk One Step at a Time was not entirely selfless. “I was going through a transition and needed a purpose. The very thought of a fundraising walk gave me a huge lift,” Rinkel recalls.

Rinkel chose to donate money raised to the American Academy of Neurology Foundation (AANF), which met her two essential criteria: funds would go specifically for PD and MS research, and there would be very little or no overhead.

To prepare, she did exercises in the pool twice a day. When it became cooler outside, she started to walk—gradually increasing her route to five miles a day, and always including a stop at McDonald's for coffee.

Walk One Step at a Time raised almost $8,000 for research in Parkinson's disease and multiple sclerosis.

Initially, Rinkel did not expect Nielsen to physically participate in the Walk—“she is single, works to make a living, and was facing DBS surgery.” But after hearing the plan, Nielsen volunteered.

Rinkel saw her hard work rewarded when, on the “kick-off” day for Walk One Step at a Time, more than 100 people showed up to walk in the opening 5K.

After that, “every day was different. Every morning we had to make adjustments,” Rinkel says. She and Nielsen listened carefully to the weather and their bodies. “We didn't always walk far, but we kept our focus on the goal,” Rinkel says. She had initially planned to walk the full 450 miles, but found instead that supporters around the world were walking on their behalf and “donating their miles” to the final count.

Although they didn't meet their initial goal of $50,000 for the AANF, they raised almost $8,000. Rinkel says she realized their accomplishments couldn't be calculated in terms of dollars raised without taking into account the “inspiration [the Walk provided] to those who needed it.” Walk One Step at a Time served to remind people, Rinkel says, “that research continues—and that there is hope for a cure.”

Rinkel and Nielsen have gleaned many lessons from organizing their first Walk and are excited to continue their work in 2012. Already, they are busy drafting plans for upcoming fundraising events (a dinner and a spot in the Woodland, CA Christmas parade), as well as two more walkathons—in California and Colorado.

For more information on Rinkel and Nielsen's efforts, go to walkonestepatatime.com . To learn more about the American Academy of Neurology Foundation's commitment to education and research to improve patient care and quality of life, visit: aan.com/foundation .

—Olga Rukovets

Marise Rinkel's advice for aspiring advocates:

BE FLEXIBLE Your dream may need to be adjusted—many times.

GET A TEAM TO WORK WITH YOU. I'm not a detail person—the three people on my team are, and I need that!

PLAN AHEAD. Realize that if you do a walkathon, or other-athon, food or gift donations from stores or businesses usually require at least six weeks' notice to get their main headquarters to okay them.

THINK LOGISTICS. You may need to acquire permits, insurance, and a nonprofit tax number.

STAY FOCUSED. Continue to ask yourself, “Why am I doing this? What is my goal?”

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