Nathan Alexander: SEIZ ure LIFE

Thirty year old Nathan Alexander of Knoxville, Tennessee has always been athletic, whether it was kayaking in the Gulf of Mexico, swimming or hiking.  After having his first seizure in 2009 he worried that those days might be behind him.  However, not only has he been able to continue his athletic endeavors, he has been able to incorporate epilepsy advocacy into the events in which he participates in order to inspire others and also raise funds to aid in epilepsy research.

Nathan Alexander at the Rock 'n' Roll Marathon in Savannah, GA

Nathan Alexander at the Rock ‘n’ Roll Marathon in Savannah, GA

Adversity

When Nathan first began to take to take medication for his seizures, it actually worked so well that he began to stop taking it because he believed that he didn’t need it anymore.  Then, in November of 2011, Nathan very nearly suffered catastrophe.  He was driving when he began to experience what he knew were signs that he was about to have a seizure, including what he describes as a “pinching behind my eye.”  These signs and symptoms are often described as auras.

Nathan’s last thought before the seizure was “I have to stop this Jeep.” Unfortunately, Nathan was overcome by a seizure before he could do so, and the next thing he remembers is waking up in the hospital unaware of what had transpired.  He only learned afterward that he had lost consciousness and that his SUV had left the road, traveling through an empty parking lot as well as a gas station—narrowly missing the pumps—before crashing into a telephone pole.  Had it not been for the telephone poll, Nathan would have careened onto a busy street.  “That was my wake up call,” Nathan says.  “When that happened, that was low point for me.”  Since the accident, Nathan has strictly adhered to his medication regimen in order to prevent anything similar from happening again.  He realizes that he was fortunate to escape major injury or possibly an even worse outcome.

Support

In a testament to how Nathan enjoys “the idea of challenges” and how he sees them as opportunities and not roadblocks, on the one year anniversary of the accident, he ran the Savannah Marathon proving to himself that he can accomplish any goal for which he strives.  He also realized that although he might not be the type that would be able to get up on a stage to spread awareness for epilepsy, he instead could to become an advocate by tapping into his athletic ability.  In support of this goal he launched a Facebook page called “SEIZ ure LIFE” in order to support the epilepsy community after deciding he could be a vehicle for change in how epilepsy is treated and perceived.  To help accomplish this he is currently aiming to raise $5,000 for the Epilepsy Foundation by the time he runs in the Philadelphia Marathon on November 17th.  The timing of the event not only coincides closely with with the second anniversary of his accident but it is also in the middle of National Epilepsy Awareness Month.  Furthermore, Nathan hopes to make this an annual event and continue the advocacy he has successfully begun.

Nathan Alexander is running to raise funding for epilepsy research.

Nathan Alexander is running to raise funding for epilepsy research.

Nathan has also created his own ‘SEIZ ure Life’ shirt that he wears during races that allows him to be an advocate during events.  Often times the shirt can start a discussion about epilepsy and help others who may not know much about epilepsy to understand the condition. Additionally it can begin conversations with those who have a loved one with seizures or who have epilepsy themselves.   He recounts a particular incident during an 18.6 mile trail run in May when he was wearing the shirt, and several miles into the run a doctor who was also running caught up with him after noticing his shirt.  She spoke about about a patient she treated who was having seizures and about how much research is still needed when it comes to understanding epilepsy.

Doctors and Treatment

Nathan’s first seizure caught him completely by surprise.  He explains that he was just “sitting on the couch, doing [his] taxes.”  And then he had a tonic-clonic seizure.  When he regained consciousness, EMTs were surrounding him and he was stiff and confused.  At that point “it was totally new to me,” he says.  Nathan had only a passing familiarity with epilepsy.  Within six months he had another seizure and it was at this point he had a neurological CT scan and saw a specialist.  He was put on a low dose of medication which was fortunately able to control his seizures.  He now follows his medication schedule strictly.

Tips, Tricks and Advice

Nathan acknowledges that “as common as [epilepsy] is, most people don’t know what it is.” That is why Nathan has chosen to face the challenges of epilepsy head on by being open about the condition. He accomplishes this by explaining the varying facets of epilepsy and how to react to a seizure with the people in his life, from his family and friends to the employees at the financial services company he manages.

For other people living with epilepsy, Nathan advises that they “should not let it shut them down—you can’t stop living.”  As evidenced by his tireless advocacy for epilepsy and his attitude towards not letting challenges get in the way of what he wants to accomplish, Nathan clearly lives by his own advice.

 

There Is No Strength Where There Is No Struggle

Note – Thanks go out to Chelsea Hutchison Foundation for hosting Chelsea’s Epilepsy Walk for SUDEP Awareness, which is where we were able to meet Rebecca and hear about her amazing story! CHF provides a variety of services to Coloradans with epilepsy including assistance with finding / paying for service dogs!!

Despite a seizure disorder caused by complications from surgery, Rebecca Yorkston maintains an optimistic outlook, declaring that, “there is no strength where there is no struggle.” A resident of Lincoln, Nebraska, Rebecca suffered a cerebral hemorrhage as a result of surgery to correct impacted sinuses in 2002.  In addition to myriad problems caused by the cerebral hemorrhage, Rebecca began to have seizures.  Currently she suffers from both absence (petit-mal) and Jacksonian seizures. Despite these challenges,Rebecca has decided to embrace perseverance and optimism, finding happiness through her work, and even helping others to find ways to live more independently.
Rebecca Yorkston is a Director with Domesti-Pups – a Lincoln, NE organization
that trains service dogs to help people with challenges like epilepsy.

Doctors and Treatment

A testament to Rebecca’s optimism lies in her acknowledgment that, “unfortunately, the doctor [who performed the initial sinus surgery] had issues.”  But she is quick to point out that she does not dwell in the past, adding that, “other doctors saved my life.” She continues, “I am very selective with my current doctors, but I trust them.”  Rebecca also embraces the use of Assistive Technology (AT) as a way to stay independent. For example, to compensate for balance and coordination problems she does not hesitate to use a wheelchair while traveling alone.  She also uses a smart watch that sends alerts when she has a seizure.  This allows her to maintain autonomy as her friends are notified and can check on her if she is alone.

Adversity

Rebecca faced numerous challenges following her life-threatening hemorrhage.  Relearning to walk took two years and she was unable to drive for three years.   Her seizures are often triggered by an overload of sensory input.  “I have to make sure to plan ahead,” says Rebecca, and regular naps have become a constant in her schedule.  Avoiding too many decisions at one time is also important.   As an example she cites difficulties that can be faced while dining out.   An unfamiliar or expansive menu can prove problematic.  Rebecca states, “if I try to choose from too many [options] it can trigger a seizure.”  In addition to the seizures, she has faced a few other challenges, such as being unable to do math at the same level she could before the surgery.

Support

Due to reduced balance and coordination Rebecca looked into getting a service dog. However, she was unable to find a service that could provide both a dog and the training that the dog would need to become a successful service companion. Fortunately, she was able to piece the puzzle together by going to two different sources. First she adopted the dog, a black lab named Slater from a kennel in Colorado. Then she connected with a Lincoln-based non-profit called Domesti-Pups and the organization’s Executive Director Michelle Ashley. Slater was able to be trained and afterward Rebecca remained a consultant for the organization’s fledgling service dog program. It was after the hemorrhage that Michelle offered Rebecca the position to become the director of the service dog program, a position she still holds.

Rebecca introduces a “Domesti-Pup” to school kids in Nebraska.

Since Rebecca first became involved with Domesti-Pups in 2000, the service dog program has grown and provided service dogs to many people. The dogs are trained not only by volunteers but also through a program that allows inmates at local prisons the opportunity to train the dogs for the lifetime of assistance they will provide. “We have very strong criteria for how we pick [the dogs]” Rebecca says, which is evidenced by the qualification rates of the dogs for the program.  “If we were to test 100 dogs, only about ten would qualify,” Rebecca continues that, only seven or eight will graduate.”  That small number of highly-trained dogs then becomes eligible for placement with recipients who greatly value their help.

Speaking with Rebecca about the dogs and the services they provide is clearly a source of happiness for her.  “Service dogs can help with a lot of things we take for granted,” Rebecca says.  She points to a specific example of a service dog that has been able to help a five-year-old to retrieve beverages without help from parents.  Rebecca is excited about this achievement, because the service dog is helping a youngster, “who [otherwise] could never open a fridge.”  This is just one of many ways that Domesti-Pups has been able to help people to achieve a little bit more independence in every-day life.

Tips and Tricks

Rebecca admits that after the surgery she was frustrated.  But she soon came to realize that there was no benefit to, “continuing to stay angry with the doctor.”  With the mantra of, “things happen for a reason,” Rebecca lives her life by staying focused on the present and near future as opposed to dwelling on the past.  She encourages others to do the same.  Rebecca advises that, “if we always look forward we will make it.”  She also cautions against allowing a large task to become a mentally-insurmountable obstacle. To illustrate this, she describes the bicycling analogy of pedaling up a large hill.  If she focuses on the summit from the very beginning, then the task is always incredibly difficult.  But if she focuses instead on pedaling up the path immediately ahead of her, then she usually finds herself conquering the summit before she knows it.  That same attitude can be used for any challenge placed in one’s path.

-Seth Friedman

Seth serves as the Finance Director on the Seize The World board and he interviewed Rebecca Yorkston by telephone for her Strength feature.   Seth was put in touch with Rebecca by Seize The World volunteers who met her at Chelsea’s Epilepsy Walk for SUDEP Awareness in Sept. 2012.  The Walk was hosted by the Chelsea Hutchison Foundation. Seth was inspired to learn about Rebecca’s story and was amazed by what she has accomplished!

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!

Richard Shane’s Brilliant Outcome Through Surgery and Community Involvement

Over the course of 22 years Richard Shane estimates that he has experienced 2,500 simple partial and generalized seizures. However, thanks to epilepsy surgery Richard has now been seizure free for over eight years.

Adversity

In 1993 Richard founded his own marketing company, Treasure Chest, despite having frequent seizures adding an additional challenge to what was already a large endeavor. Richard explains that on occasion he “would hang up on clients during a seizure.” He would then need to “hit redial, apologize for the disconnect and explain that I have epilepsy” before continuing with their business. By being honest about his condition Richard was able to quickly return to the original conversation. Also contributing to Richard’s ability to succeed with running his own business was his competitive drive which was garnered from being an athlete. He was determined not to let epilepsy stand in the way of his goals and due to his competitive spirit and as being up front with his condition Richard was able to continually grow his successful business. richardshane1

[Richard Shane out on his boat with the New York City skyline in background.]

Support, Doctors & Treatment

After being diagnosed with epilepsy and seeing several doctors Richard spent two weeks at the University of Virginia’s epilepsy center undergoing in-patient testing. From there he continued his treatment at Columbia Presbyterian Hospital. While there Richard was initially presented with the option of surgery but he quickly dismissed the idea as he was adamant no one would remove a portion of his brain. He proceeded to attempt to treat his epilepsy with an ultimately unsuccessful mix of medications. The seizures continued at an advancing pace until eventually he was encouraged by his girlfriend at the time to continue his search for an effective therapy. He went to see neurologist Dr. Orrin Devinsky at New York University Langone Medical Center with the hope that he would be able to recommend a new medication or mix of medications that would finally help him control his epilepsy.
richardshane2
 Richard sits with his neurosurgeon, Dr. Werner Doyle.

Instead of attempting a new treatment with medicine as Richard had initially hoped Dr. Devinsky recommended the treatment option Richard had dismissed several years earlier – surgery. “Dr. Devinsky told me that no medication would control my seizures” Richard explains. While he was reluctant at first Dr. Devinsky explained throughout subsequent appointments with Richard that “the seizures could change who I am,” since they emanated from the part of the brain that controlled emotions. Richard continues that he also had reservations about the scar the surgery would leave but says Dr. Devinsky told him “if you are worried about a little scar on the side of your head” he had much worse problems than epilepsy. It was at this point he realized that his epilepsy may have been hindering his ability to weigh the consequences versus the potentially phenomenal benefits that epilepsy surgery offered.

He eventually agreed to have surgery which was to be performed by Dr. Werner Doyle, whom Richard enthusiastically describes as “brilliant.” After undergoing a series of tests and with his family by his side he went through the first of two surgeries at NYU Langone Medical Center. The aim of the first surgery was to accurately pinpoint the origin of his seizures. Electrodes were placed onto his brain and then his doctors waited for Richard to have a seizure. During the seizure the affected portion of his right temporal lobe was identified and the second procedure commenced. During this surgery the portion of his brain that was causing the seizures was removed. The surgery, completed in March of 2004 was successful and Richard has not had a seizure since.

Tips And Tricks

Richard’s best advice might be to trust the support offered by friends and family and by skilled doctors.

richardshane3
Richard Shane at NYU Langone Medical Center FACES Gala together with actress Jane Seymour and NYU Langone Medical Center Dean Dr. Robert Grossman and wife Dr. Elisabeth Cohen. 

He admits that while attempting to manage his epilepsy he would ask “Why me?” After his surgery he asks the same question, but for a different reason. “Why am I so fortunate when so many others are still challenged by epilepsy?” As a result he has remained active in the epilepsy community, most notably through his work with FACES, a non-profit affiliated with NYU Langone Medical Center. The acronym FACES stands for the organization’s noble goal – Finding a Cure for Epilepsy and Seizures. In support of this goal FACES recently hosted a gala which raised over five million dollars. Additionally, Richard supports the epilepsy community by openly sharing his story and by being honest about his experiences with seizures. In 2007, Richard was profiled as part of a television feature about driving with epilepsy on New York’s CW11 news channel. The story, prepared by Mary Murphy, won the 2008 Gold Keyboard Award for Outstanding Enterprise in Investigative Reporting from the New York Press Club.  Richard hopes that by continuing to be involved that others will also be fortunate enough to share the outcome he has achieved.

-Seth Friedman

Seth serves as the Finance Director on the Seize The World board of directors and was excited to write this Share Your Story piece about Richard “Richie” Shane.  He spoke with Richard by phone two weeks before publishing the article and was amazed and impressed by Richard’s story.