Conquering Your Fear

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.

Adversity

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.”

Support

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 Friedman

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!

Epilepsy is Not Who You Are

Jake Quigley is 39 years old and lives in Hanover, New Hampshire with his wife Jeanie.  He is a non-profit consultant and he owns a personal & professional coaching firm called Inspired Shifts.  Jake has epilepsy, but he subscribes to the idea that, “epilepsy is something you have, it’s not who you are.”  Jake lives this idea.  Six months after having brain surgery on December 23, 2010,  he departed to go on a multi-week trekking expedition to the Himalayas with his wife Jeanie.  They spent a month hiking and camping at elevations between 15,000 and 20,000 feet.  When he is not busy helping clients in his coaching business, Jake can usually be found hiking, running, riding mountain bikes, and most-importantly, spending time with his wife and his family.

Jake Quigley had brain surgery to treat his epilepsy on December 23, 2010, six months before departing to go on an expedition to the Himalayas.

Jake is a founding board member of the Boulder, CO – based nonprofit organization Outdoor Mindset.  He is currently working on setting up roots for the Foundation in New Hampshire.   Jake and Jeanie have been building strong connections within the neurology department at Dartmouth Hitchcock Medical Center.  They live close to the center because Jeanie is in medical school at Dartmouth.  Jake sees the proximity to Dartmouth Hitchcock as a great opportunity for Outdoor Mindset, as it provides a hub for the organization on the east coast.  The organization’s tagline reads like this: “Outdoor Mindset unites and inspires people affected by neurological challenges through a common passion for the outdoors.”  Their primary program is called the Guide program and it is based entirely on this idea.  It seems no wonder that Jake would be involved in such a project, coming from strong backgrounds in personal coaching as well as consulting, and being a person with a genuine love for the outdoors.

ADVERSITY

Since age eleven, seizures have been a part of Jake’s life.  During the past three years, however, epilepsy really began to gain the upper hand.  Seizures started happening practically on weekly basis, causing cognitive complications, memory failure, and anxiety attacks. Jake’s post-ictal amnesia devolved into terrifying confusion.  He realized in 2008 that it was important to make a big change and began to consult with doctors at the University of Colorado Neurosciences Center, a Level 4 Epilepsy Center.  They suggested the idea of brain surgery.

Jake is getting prepped for his first of two surgeries with support from his father and from his wife, Jeanie. He is fresh off the slopes of Breckenridge in this photo, where he spent several days skiing just before his operation.

SUPPORT

On support, Jake says, “My biggest support network was definitely my wife and my family – they were always incredibly supportive of whatever decision I made.”  He values the fact that his family was never overly protective and that they were always supportive of his independence and his decisions.

When he was considering surgery, Jake turned to Outdoor Mindset and that is how he met his Guide, Diane Van Deren.  Diane has a remarkable story herself, being a North Face sponsored endurance runner who has epilepsy.  She was a tremendous help for Jake because she had gone through the exact same surgery that Jake was facing ten years previously.  Jake recalls, “It wouldn’t have been possible to go through the whole process without having a person to tell me what it was like from a first hand perspective – a person who is a friend, an advocate, a champion…  That is Diane.”  Diane is still Jake’s Guide today, and he speaks with her regularly about his seizures and about important decisions – such as his upcoming consideration of whether or not to go off of medication.   “It makes a huge difference to have that resource.”  For more information about Outdoor Mindset and the Guide program, please visit the Foundation’s website at www.outdoormindset.org.

DOCTORS AND TREATMENT

Jake has had complex partial and absence seizures for most of his adult years.  He also had a few tonic clonic (grand mal) seizures during his childhood.  Doctors thought for a time that Jake might have had juvenile epilepsy, and outgrow his seizures, but that was not the case.  He took Tegratol into his early thirties and by the time he was 38 he had been through four different medications.  His doctors advised him to consider surgery in 2009.

Jake decided to go for it the following year and he had surgery in 2010 at the University of Colorado Hospital in Aurora.  Jake recalls, “I couldn’t have asked for a better outcome.”  He has been seizure free since the operation and is considering going off of medication – though he is thinking long and hard about that step.

Jake’s surgery was an intense process that began with a series tests.  First, Jake had take several EEG tests, one of which involved cutting away pieces of skull tissue behind his ears to place electrodes directly onto his brain.  Another test involved injecting dye into his brain by way of his bloodstream.  His doctors did this by inserting a catheter into his femoral artery and threading it up through his heart and carotid artery until it reached his cranial space.

The tests took a long time and they were not pleasant, but they allowed Jake’s doctors to be 100% sure about the origin point of Jake’s seizures – his right temporal lobe.   This knowledge was important because it allowed Jake’ doctors to precisely target the source of his epilepsy.  It was also important because the right temporal lobe is a somewhat less-complex side of the brain, not responsible for functions such as speech and language.  Surgery would be relatively low-risk and it would be easy to target the correct area.  That said, it was still brain surgery and Jake did not treat the experience lightly.  He spent about two weeks in the hospital total.  Jake recalls of the experience, “I recuperated for five days [after the surgery] at a small house next to the flatirons [in Boulder], relaxing.  I was up and walking out the backdoor on local trails within a few days.”

TIPS TRICKS AND ADVICE

Jake has a few pointers about epilepsy in terms of recovery, travel, and being active.  He also has advice for parents.

Jake’s thoughts for parents?  “Be to be careful to limit what kids can and can’t do with epilepsy.  Kids are impressionable.  They look up to what adults do as important and true.  If an adult diagnosed with epilepsy keeps a positive approach to things, that keeps things positive.”

On recovery and travel?  “What I needed the most was a goal to recover – both emotionally and physically.  What [Jeanie and I] eventually settled on was that we were going to go on a trip in the Himalayas.”  The pair traveled to the remote Ladakh region of Northern India where they spent three weeks trekking between the cities of Leh and Srinagar.  Most of their trip was spent at elevations between 15,000 and 17,000 feet, with their highest camp approaching 20,000 feet when they visited the advanced base camp for Nun Peak, India’s highest summit of 23,450 ft.

Jake and his wife Jeanie trekked for a month in the Ladakh region of India’s Himalaya Mountains, hiking and camping at elevations between 15,000 and 20,000 feet.

Jake was worried about the trip initially.  He departed only months after his surgery, and he checked in regularly with his neurologist, who, incidentally, was Napalese, and therefore familiar with the ins and outs of high altitude.  She gave him the OK for the trip, saying that she was more concerned about food poisoning than altitude.

Jake recalls that his trip was, “Amazing,” and explained that, “It proved to me that I could do it.”  Jake saw the journey as a part of a way to regain the upper hand with epilepsy.

When asked about how epilepsy has affected his life and his adventures, Jake remarked,

“I made the decision a long time ago that I would never let my neurological disorder lead my life. Setting a goal of fully recovering was my main motivation, and planning this adventure was a way to do that.”

Today, Jake is learning strategies on how to improve his cognitive functioning.  He is also thankful for the significant decrease in his anxiety since the successful surgery.  Jake is aware that epilepsy may remain a part of his life going forward, but he gives the strong impression that epilepsy is only one of many components in a life full of activity and happiness.