Stephen

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.

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One thought on “Epilepsy is Not Who You Are

  1. Jake it was so cool to get your full account – I had no idea when we first met a couple of years ago that you were on track for brain surgery, much less an Odyssey to the Himalayas! Amazing. -Stephen