Run­ning With Epilepsy

For Amanda Plomp, the re­wards of run­ning out­weigh the risks.

Canadian Running - - FEATURES - By Madeleine Cum­mings

Cal­gar­ian Amanda Plomp knows she could have a seizure at any mo­ment dur­ing a run, but epilepsy hasn’t stopped her from rac­ing around the world. For some­one fa­mil­iar with los­ing con­trol of her body, run­ning has be­come a way of har­ness­ing its power and push­ing its lim­its.

Amanda Plomp’s life changed the day af­ter she turned 14. She col­lapsed in the shower and had a tonic-clonic seizure. Her mus­cles stiff­ened, then con­vulsed, and she lost con­scious­ness. Her fa­ther pulled her out of the shower and she even­tu­ally re­ceived a di­ag­no­sis: epilepsy, the brain con­di­tion that causes seizures. She re­al­ized she had been hav­ing more mild, my­oclonic seizures – the kind that cause mus­cles to jerk a bit – but hadn’t thought much of them.

Though her par­ents were sup­port­ive, peo­ple at her school in St . Al­bert (a small city near Ed­mon­ton) were not. She re­calls be­ing pulled out of phys­i­cal ed­u­ca­tion class and told to write a pa­per about soc­cer in­stead of play it with her class­mates. Worse still, friends aban­doned her. She was con­fused be­cause her peers hadn’t wit­nessed a sin­gle big seizure. Later, she found out they thought she was “fak­ing it.”

Plomp switched schools and made new friends. She switched med­i­ca­tion and could even drive for a time be­cause her seizures were so in­fre­quent. Then she found out the med­i­ca­tion was caus­ing liver da­m­age, so she stopped tak­ing it. She had many seizures dur­ing her university years and by 2011 she was hav­ing them mul­ti­ple times a week. That year, she went through 11 dif­fer­ent med­i­ca­tions, which came with de­bil­i­tat­ing side ef­fects. Some caused ver­tigo so in­tense she couldn’t walk or sit up. An­other caused her to gain 60 pounds. Fi­nally, she found one that seemed to work well.

About a year later, Plomp’s life changed again when she started run­ning. She eased into the sport slowly, as her lunchtime walks in Cal­gary grad­u­ally turned into runs. She ran some 5ks and then sur­prised her­self by run­ning her first 10k in 53 min­utes, with­out keep­ing track of her mileage or do­ing any for­mal train­ing lead­ing up to the race. She just ran when she felt like it and when she had the time.

She’s now 33 years old and a reg­u­lar at road races – es­pe­cially 5ks and half marathons. She ran the Vic­to­ria Marathon in Oc­to­ber of 2017 and the Banff Marathon in June. She plans to travel back to Vic­to­ria this fall and com­pete in races in Hal­i­fax and Scotland.

When seizures oc­cur, Plomp loses con­trol of her body. But when she runs, she’s in con­trol – of her route, pace and dis­tance. She also finds the free­dom and in­de­pen­dence of run­ning alone em­pow­er­ing.

“At some point with run­ning, I stopped be­ing epilep­tic and I be­came a run­ner,” she said. “I didn’t know that changed, but I re­al­ized that it was a big­ger part of my life than my epilepsy is and it was some­thing I was choos­ing. That’s what made it more im­por­tant. I could choose to run.”

Of course, epilepsy does in­ter­rupt her runs and races on oc­ca­sion. The my­oclonic seizures can cause her to stum­ble or fall and her shins and knees are scarred from be­ing scraped and shred­ded so many times. She started wear­ing tights or other cov­er­ings so race or­ga­niz­ers wouldn’t ask her to stop run­ning af­ter a bloody fall.

When tonic-clonic seizures hap­pen mid-run, that’s a lot scarier. She woke up af­ter one seizure on a hill in Cal­gary, glanced at her watch, and re­al­ized that she had been ly­ing on the ground there for 25 min­utes. Likely, she had hit her head and had a con­cus­sion. No one had stopped and stayed with her un­til she woke up.

Plomp’s new run­ning habit wor­ried some of her friends and fam­ily mem­bers, who urged her to run with a buddy, or at least use track­ing apps on her phone. Though she un­der­stood their con­cern, she ar­gued that risks were in­her­ent in many of her daily ac­tiv­i­ties. Ev­ery time she takes a shower, for ex­am­ple, she risks hav­ing a seizure and sus­tain­ing a head in­jury from the fall (She’s had many seizures in the shower). One of her worst seizures hap­pened while sim­ply stand­ing in a park­ing lot, talk­ing with a friend. She fell for­ward and hit her head on a block of con­crete, knock­ing out teeth.

Plomp’s neu­rol­o­gist, Jagdeep Kohli, gave run­ning the green light af­ter hav­ing a dis­cus­sion with her about the fre­quency of her seizures and the pre­cau­tions she takes. (Though she prefers to run alone, she does in­form peo­ple when she’s de­part­ing and when she ex­pects to re­turn). “Re­ally, it’s about judg­ing the risk,” Kohli said. “If she was into moun­tain climb­ing, I’d say, ‘I don’t think that’s a good idea for you…’ but some­thing like go­ing out and run­ning? Even though there are some risks in­volved, com­par­a­tively, with other ac­tiv­i­ties, the risk is on the lower end of the spec­trum.”

Since she started run­ning reg­u­larly, Plomp has had fewer tonic-clonic seizures per year, go­ing from monthly in­ci­dents to just three in 2016. Her mileage, on the other hand, has gone up, and she plans to run an ul­tra­ma­rathon some­day. Kohli said it’s un­likely run­ning it­self re­duces

“RUN­NING’S BEEN A TAN­GI­BLE WAY FOR ME TO SEE HOW FAR I CAN GO EACH TIME AND HOW MUCH FUR­THER I CAN GO.”

the fre­quency of seizures, but it can help con­trol stress, which can be a trig­ger for many peo­ple with epilepsy.

Though Plomp’s seizures oc­cur less fre­quently lately, she still gets headaches and mus­cle spasms and lives as if she could have a se­ri­ous seizure on any given day. She’s tied to a strict, twice-a-day med­i­ca­tion sched­ule and sign­ing up for races is al­ways a gam­ble. Al­though seizures them­selves are scary, the fear of ex­pe­ri­enc­ing them can be much worse.

“That fear is al­ways there,” she wrote in a blog post last sum­mer. “When I have com­mit­ments, when I have plans, when I say that I will be some­where, I rec­og­nize that nag­ging worry in the back of my mind that re­minds me that I have a con­di­tion that could stop me from be­ing there.” Peo­ple with epilepsy also of­ten strug­gle with side ef­fects like ver­tigo, nau­sea, fa­tigue, de­pres­sion and anx­i­ety.

Epilepsy is al­ways on Plomp’s mind, but for a woman who was once told she would prob­a­bly never live on her own, run­ning has be­come her way of re­ject­ing life’s lim­i­ta­tions and mov­ing for­ward. She had a seizure in June 2017, but that didn’t stop her from be­ing a brides­maid or run­ning a half-marathon in Banff a few days later.

Last year, she started a blog, which draws in­ter­na­tional read­ers, and she has spo­ken at an epilepsy aware­ness con­fer­ence in Cal­i­for­nia about epilepsy and ath­let­ics. She’s meet­ing other ath­letes with epilepsy and hop­ing to in­spire young peo­ple who have the con­di­tion. She doesn’t urge peo­ple to start run­ning or adopt her lifestyle, rec­og­niz­ing that any­one with epilepsy should con­sult with a doc­tor be­fore em­brac­ing a new form of ex­er­cise, but she does want more peo­ple to know run­ning with epilepsy is pos­si­ble. De­spite the risks, she keeps go­ing. “Run­ning’s been a tan­gi­ble way for me to see how far I can go each time and how much fur­ther I can go.”

Madeleine Cum­mings is a jour­nal­ist based in Ed­mon­ton. Her col­umn ap­pears reg­u­larly in Cana­dian Run­ning.

BE­LOW Amanda Plomp at the 2017 Banff Marathon OP­PO­SITE BOT­TOM Plomp run­ning the 2017 Vic­to­ria Marathon

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