An avid traveler, Debra Winsor epitomizes the term citizen of the world. The Minnesota native and recent Boulder resident is currently enjoying life in Costa Rica, the latest stop on a journey that has been defined much more by adventure than epilepsy as she declares, “I do not let epilepsy run my life.” Her travels have not only taken her to all 50 states but also numerous countries throughout the world, including many in southeast Asia, Africa, the Caribbean and Central America.
Debra Winsor in Costa Rica.
Debra is not completely sure when her seizures began but has been told her first seizure was caused by a fever at the age of two. Her first grand mal seizure was at the age of 16 and it was at this time she was diagnosed with epilepsy. Currently she has Petite Mal (absence) and Grand Mal seizures. While the frequency of the Petite Mal seizures varies greatly, from none on a good day to more than 50 on a bad day, the rate of the Grand Mal seizures has been increasing from roughly once a decade to at least one a year.
While pondering the question of whether epilepsy has been a primary source of difficulty / challenge, Debra offers that she has, “never seen it that way.” Because of this, she lists her medication regimen and dealing with “people’s misunderstanding and reactions when they first find out” she has epilepsy as the biggest hurdles. Furthermore, a constant challenge for Debra has been finding a good neurologist. “In the almost 30 years of having [epilepsy] I can honestly say I have only ever had one good neurologist!” she exclaims. Additionally, because of epilepsy Debra was unable to join the Peace Corps. However, through her travels she has been able to see how different cultures handle seizures, and she has been able to meet other people with epilepsy. “In many cultures,” Debra explains, “people with epilepsy are considered Shamans. I really like this idea.”
Doctors and Treatment
While Debra does declare she has had difficultly finding a neurologist she can trust there was one doctor who undoubtedly helped her. Debra says “She was real with me and upfront” and that she “encouraged me to do what I wanted but with some light caution.” This stands in direct contrast to another neurologist who attempted to treat her solely with varying drugs despite not doing blood work or exploring other options. Debra has a Vagus Nerve Stimulator and currently takes two medications, Keppra XR and Lamotrigine although she has “pretty much had them all but stopped because of the side effects.” Debra also says “being active is key in my life. If I am not active I feel like it stresses my body out and the result is seizures.”
“If I am not active I feel like it stresses my body out and the result is seizures.”
In Debra’s words both her family and friends have been an “amazing” source of support. “I really feel lucky because my family never treated me differently because of my seizures.” Her friends, who witnessed many of her seizures are also helpful as they kept her “centered and unlimited. Even if they have concerns they will say it in a manner that doesn’t offend me.” This is especially important in light of some of the negative doctors she has seen. Debra states that as the doctors were telling her “no” her friends and family “kept me in the zone that I can do whatever I put my mind to!” They have also allowed her to keep a positive attitude when the struggles of epilepsy appear. Debra also started to get involved with Outdoor Mindset prior to leaving for Costa Rica.
Tips and Tricks
Debra cites humor as a great help “because it makes it easier for people to ask questions and feel at ease.” Furthermore, Debra stresses her belief that epilepsy is “not a condition that rules my life.” While admitting she was scared when she was first diagnosed she was determined to continue to experience the world around her and “realized that I can do anything I put my mind to.” This is evidenced by the impressive list of things Debra has done. In addition to the travel that would leave a writer for Lonely Planet in awe she has sky dived three times and climbed Mt. Kilimanjaro as well as other high mountains. Additionally she has gone white water rafting, zip-lining, hang gliding and cliff jumping. Her desire and ability to confront fear is further evidenced in another activity she enjoys – rock climbing. “I climbed Devil’s Tower, which was scary,” she says. “I got interested because of my fear of heights.” She continues “when I have a fear I try to conquer it.”
Despite the challenges of epilepsy Debra leads an active and adventurous life. It is not only from this lifestyle but also through an upbeat and positive attitude that Debra continues conquer the hurdles of epilepsy.
Seth serves as the Finance Director on the Seize The World board and he met Debra Winsor while volunteering at Strides For Epilepsy – an annual 5k Run/Walk hosted by the Epilepsy Foundation of Colorado in Denver. Seth was excited to feature Debra’s story through the Share Your Story program, and even though Debra was traveling in Central America during the months of August/September, she stepped up to do an interview with Seth by phone and email in order to publish the feature!