Run­ner’s Kitchen

Tis the Sea­son to In­dulge (in mod­er­a­tion) RECIPES Wild Rice Bowls with Spiced Squash, Mush­rooms and Cur­ried Yo­gurt; Lunch Wraps with Sun­flower Seed Spread; Beet the Cold Smoothie

Canadian Running - - FEATURES - By Ta­nia Haas

If you look care­fully, there’s a slight shuff le to Car­rie Siu-Butt’s walk. When the 43-year-old is at work and dressed in smart suits or fit­ted A-Line dresses, she takes short steps in her black patent heels; her right foot scuffs the f loor ever so dis­tinctly. The scar on her chest is an­other clue. That’s where the bat­tery that pow­ers her re­sides. Shuff les and scars are in­di­ca­tors of the neu­ro­log­i­cal con­di­tion she’s man­aged since she was 12 years old. When she’s in her leg­gings and sneak­ers, though, Car­rie glides like a gazelle.

Dys­to­nia crip­ples some parts of the body, and leaves oth­ers alone. The jerk­i­ness of Car­rie’s dys­to­nia first af­fected her stride around pu­berty. By her mid-20s, it was painful to walk. The se­vere and in­vol­un­tary mus­cu­lar con­trac­tions oc­curred fre­quently, mak­ing it hard to move. Even when sit­ting still, the twist­ing spasms would ache deeply. Some doc­tors urged Car­rie to con­sider us­ing a wheel­chair to get around, and on with her life.

In­stead, Car­rie opted for an ex­per­i­men­tal med­i­cal pro­ce­dure called Deep Brain Stim­u­la­tion ( dbs). dbs, orig­i­nally de­vel­oped for the treat­ment of tremors in pa­tients with Parkin­son’s dis­ease, in­volves sur­gi­cally im­plant­ing a bat­tery-pow­ered st im­u­la­tor, a brain pace­maker, which de­liv­ers elec­tri­cal stim­u­la­tion to the ar­eas of the brain as­so­ci­ated with dys­to­nia. In April 2006, when she was 30, Car­rie un­der­went two pro­ce­dures. Car­rie’s stim­u­la­tor was im­planted in her chest. Ex­ten­sion wires con­nect the stim­u­la­tor to leads deep in the brain. Car­rie’s head was shaved, and she was awake dur­ing the process of im­plant­ing the leads. She re­sponded to cues as the sur­gi­cal team worked on place­ment. Then, un­der gen­eral anes­the­sia, the sim­u­la­tors and wires were im­planted. The stim­u­la­tion was ad­justed by re­mote con­trol to achieve the most op­ti­mal set­tings. Af­ter six weeks of rest and re­cu­per­a­tion, Car­rie’s pain had de­creased, and she was able to walk with­out her leg drag­ging. That’s when her run­ning dreams started to take form.

In Car­rie’s case, run­ning stream­lines any jerk­i­ness caused by the dys­to­nia. One year later, she ran a 10k. Three years later, two half marathons. Last Novem­ber, Car­rie ran her sec­ond marathon (and racked up 12 half marathons to­tal).

“It wasn’t un­til I had brain surgery that I de­cided I wanted to run a 10k,” says Car­rie. “For me, run­ning is cathar­tic. Feel­ing the ground with ev­ery step re­minds me that I am a mir­a­cle ev­ery step of the way.”

When­ever Car­rie talks about train­ing, a huge smile grows on her face, her eyes squint with hap­pi­ness. She ra­di­ates grat­i­tude, and for good rea­son; it sure beats a hos­pi­tal bed.

Since her first dbs surg­eries in 2006, she’s had six ad­di­tional surg­eries to re­place the bat­tery. When the bat­tery starts to lose power, she not ices ext reme fa­tigue. Slight tremors can set in, her vi­sion de­te­ri­o­rates, and her speech starts to slur.

“I t ’s compa r able t o you r iPhone’s bat­tery,” ex­plains Car­rie. “Over time it loses its charge and just doesn’t func­tion the same.”

Car­rie most re­cently re­placed her bat­tery last April, when doc tor s at Toronto Gener a l Hos­pi­tal needed to go in. Two months later, Car­rie was train­ing for the New York City Marathon. She also trav­elled to and ran in Tai­wan and Japan. She’s ex­cited about her run­ning and travel plans in 2019.

In ad­di­tion to run­ning, Car­rie c redit s medit at ion a nd her com­mu­nity for help­ing her face each day with re­newed hope and ent hu­si­asm. Her sis­ter Suzie, who also has dys­to­nia, is her big­gest cheer­leader (Suzie hasn’t been lucky enough to run marathons). Car­rie has doc­u­mented her hos­pi­tal stays and runs on her per­sonal blog run­car­rierun.org and act ive Inst ag ram ac­count @csi­ubutt. She looks for­ward to post­ing more in the com­ing year.

“Af­ter 30 years of liv­ing with a rare dis­ease, I have reached ac­cep­tance. I am more con­fi­dent now in say­ing I am dis­abled. And with ac­cep­tance comes peace,” says Car­rie. “De­spite hav­ing two bat­ter y-re­place­ment surger ies over the course of 10 months, I still be­lieve that dbs has been my mir­a­cle. I am thank­ful ev­ery day for my fam­ily, my tribe and the mir­a­cle of modern science. I am grate­ful that I can be a spokesper­son for such a rare dis­ease and an ad­vo­cate for med­i­cal re­search.”

Car­rie awaits the day when she can charge the im­planted bat­tery her­self. Un­til then, she’ll spend her pre­cious en­ergy run­ning for those who can’t. Ta­nia Haas spends her days run­ning, pro­fil­ing run­ners or writ­ing at Med­can, where she helps peo­ple achieve goals through per­son­al­ized and pre­ven­tive health.

“Feel­ing the ground with ev­ery step re­minds me that I am a mir­a­cle ev­ery step of the way.”

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