February 13th is International Epilepsy Day. Celebrated annually on the second Monday of February, the event was established to raise awareness about epilepsy’s impacts on individuals, families, and communities worldwide. This year I’m honoring the occasion with a plug for exercise. I was inspired by a recent online piece published by the event’s cosponsor, the International League Against Epilepsy (ILAE). The article’s message: Exercising regularly improves physical fitness, mood, thinking and memory, and life quality in people with epilepsy. A very basic takeaway that’s true for all, but can be harder to implement while managing epilepsy, and especially challenging in the face of uncontrollable seizures.
I struggle as much as anybody to fit exercise into my daily routine that includes work, parenting, chores, and writing. As pictured above, I’m often successful. Finding my workout-groove got easier after my 2014 brain surgery eventually stopped my seizures. For one thing, I knew I wouldn’t be harassed at the health club for having seizures on the premises. This happened to me in 2006 at my fancy all-women’s Cambridge gym after I had a grand mal seizure on the elliptical machine. I typically worked out 4-5 times weekly. During the eight years I’d belonged to the club, I’d had twelve complex partial seizures that worried the gym’s staff enough that they called 911. Each time this happened, my seizure was over when the EMT’s arrived, and I signed paperwork verifying I didn’t need medical care. But on March 16, 2006, my complex partial seizure progressed into something bigger. Staff called 911, and when the medics arrived, I was in the throes of a grand mal seizure, so they took me to the local hospital.
After that day, staff insisted I work out in two 25-minute blocks on the elliptical, rather than my usual 45. Staff members watched my every move and advised me to stop exercising as the 25 minutes approached. They insisted I use the machine in the front desk’s line of vision, but it wasn’t always available. Although I understood staff members’ fears—a grand mal is scary to witness—I was aggravated by their illegal scrutiny and restraints. I sent a letter to the gym’s CFO. His staff’s actions violated the Americans with Disability Act, I explained. I threatened to file a complaint with the Cambridge Commission for Persons with Disabilities. Although I knew the staff’s behavior was illegal, I was depleted when I sent that letter. Did I really want to fight for membership in a club that didn’t want me? When the CFO didn’t respond, I decided to join my then-fiancé’s gym. There I’d have a friendly watchful eye if I had a seizure while exercising. I was lucky to have other options.
The ILAE article profiles Vinay Jani (pictured above), a 39-year-old Indian ultra-marathoner and Epilepsy Warrior. He was diagnosed with epilepsy in 2005 at age 21 when he a had seizure due to a noncancerous brain cyst. The doctors prescribed anti-seizure meds and told him not to drive or exercise. Mr. Jani followed their advice, and his weight increased from 166 to 242 pounds. “That really put me into depression,” Mr. Jani recalled in a recent interview. When his seizures’ severity increased in 2008, his doctor said his medication dosage was too low due to the weight gain. Mr. Jani’s options were to increase his meds or lose weight. He opted for the latter and began an intensive exercise program.
Mr. Jani became a regular at the local gym for several years. When he had another seizure in 2015, he didn’t stop exercising. In fact, after meeting an indoor cycling trainer, he upped his game. Mr. Jani attended indoor classes and joined a weekly 30-kilometer bike ride. When Mr. Jani mentioned the risks presented by outdoor cycling for a person with epilepsy, his trainer offered to ride with him, and encouraged Mr. Jani to try long-distance cycling. After several months, he joined timed 200-kilometer group rides, and simultaneously started long-distance running. His years of intensive training paid off: Mr. Jani participated in five bicycle races over four years, including a 1,000-kilometer event in partnership with Ekatwam, an Indian epilepsy-education nonprofit. As somebody who regularly bicycled when I had uncontrollable seizures, I appreciated Mr. Jani’s courage, and his trainer’s generosity. Mr. Jani’s story reminds Commonwealth Games’ silver medalist and British Epilepsy Warrior, Imogen Clark, whom I blogged about last summer. She also defied her doctors’ advice about exercise.
While many of us grapple with the obstacles of time and willpower impeding our exercise ambitions, people with epilepsy also contend with their doctors advising them not to exercise, family members’ anxieties, and health club staff restricting routines. These directly contradict the ILAE’s advice about exercise’s importance for people with epilepsy. Vinay Jani and Imogen Clark both disregarded their doctors’ suggestions and went on to become stellar athletes. They’re both Epilepsy Warriors, using their experiences as sports figures and patients to bust myths about epilepsy and encourage those who have it to follow the ILAE’s advice and stay in shape.
While I never won medals or participated in competitions, I overcame my own hurdles to stay on track with an exercise plan. In honor of International Epilepsy Day, I encourage everyone to follow the ILAE’s guidance and do the same.