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SPECIAL UNITED SPINAL ASSOCIATION’S SECTION: Sundance Film Festival and the Success of Crip Camp life beyond wheels SportsSports ChairsChairs ComeCome ofof AgeAge PlusPlus PowerPower SoccerSoccer newmobility.com MAR 2020 $4 DO YOU HAVE A RELIABLE SOLUTION TO YOUR BOWEL PROGRAM? Use CEO-TWO® Laxative Suppositories as part of CEO-TWO works reliably within 30 minutes. These your bowel program. These unique CO2-releasing unique suppositories are even self-lubricating, suppositories allow you to control your bowel making their use as easy and convenient as possible. function and prevent constipation and related problems, such as autonomic dysreflexia. Regain • 3 year shelf life confidence in social and work situations by • Reduces bowel program time to under 30 minutes avoiding embarrassing accidents with CEO-TWO! • Water-soluble formula • Does not cause mucous leakage Many laxatives and suppositories are not reliable • Self-lubricating and are unpredictable. 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CCA 469 1114 Aquila’s SofTech Healing Results Amaze the Medical Community SofTech Cushion Completely Self-Contained with Wireless Remote Shown without cover Medicare HCPCS code E2609 AquilaCorp.com 8667829658 a special thanks to those who support PLATINUM GOLD SILVER BRONZE EXECUTIVE full color black w hite PREMIER For more information on how you can support United Spinal and become a corporate member, please contact Megan Lee at [email protected] or 718/803-3782, ext. 7253. Acknowledgements on our website, in NEW MOBILITY, in United Spinal e-news or any other United Spinal publication should not be considered as endorsements of any product or service. CONTENTSIssue 318 - March 2020 life beyond wheels COVER STORY SPORTS CHAIRS COME OF AGE The wrong wheelchair can transform a fun day at the gym into a painful slog. The right wheelchair 24 can be the difference between bronze and gold. BOB VOGEL suits up and hits the courts to find out what chairs athletes are using, why they chose their wheels and what they do to maximize their perfor- mance. PAULA LARSON reports on the world of power soccer and how it has grown into a high- level international sport. Cover and Contents Photos by Loren Worthington FEATURES DEPARTMENTS 4 BULLY PULPIT 16 SUNDANCE EXTRAVAGANZA 5 BEHIND THE STORIES Disability was front and center like never before at this year’s Sundance Film Festival. DAVID RADCLIFF took 6 SHARE on the snowy sidewalks of Park City for the behind- 8 POSTS the-scenes scoop. 10 UNITED NEWS 12 GEAR HACKS 34 CAMELS, MUMMIES AND 14 HOW WE ROLL MORE IN MOROCCO 39 REFRAMED Whether you dream of riding through the desert atop a camel or camping in an accessible oasis in the sand, 40 OUTDOOR TRACKS CORY LEE WOODARD has you covered. 42 PARA/MEDIC 44 ERVIN 47 CLASSIFIEDS 48 LAST WORD Photo by Kata Galasi life beyond wheels BULLYBy Ian PULPITRuder NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS CHAMPION SLEEPER At some point in the last 10 years, I The sleep technician swore I slept for started sleeping like a baby — not the an- two hours. I swore I didn’t. She said ev- EDITORIAL gelic cherubs that gave rise to the saying eryone says that. She told me to expect PUBLISHER: JEAN DOBBS “slept like a baby,” but the needy insom- the results in one to two weeks. Two weeks later, a nurse called me back EXECUTIVE EDITOR: JOSIE BYZEK niacs that wake up every two hours. during the evening rush hour commute. EDITOR: IAN RUDER The nights of putting my head on the “To put your results in perspective, one ASSOCIATE EDITOR: SETH MCBRIDE pillow and falling into a deep, refreshing sleep gave way to a frustrating blend of to four sleep incidents per hour is consid- EDITOR EMERITUS: TIM GILMER lying in bed, watching mindless videos ered normal, four to 15 is a mild problem, SENIOR CORRESPONDENT: BOB VOGEL and occasionally drifting off. 15-30 is moderate and anything over 30 CORRESPONDENT: AARON BROVERMAN I replaced any hopes of attaining the is severe,” she said, and then paused. “You fabled eight hours of sleep with meta- had 102 incidents per hour.” CUSTOMER SERVICE phorically crossing my quad fingers and Um … I didn’t know what to say. Toll-free 800/404-2898, ext. 7203 praying for a solitary stretch of four “We’d like to get you back in for straight hours without waking up. another sleep study as soon as possible,” I knew my new normal couldn’t be she continued. “This is serious.” ADVERTISING SALES healthy, but my struggles slowly infected Over 22 years of living with SCI, I’ve 718/803-3782 my perception of what constituted a good received enough test results over the phone to earn my merit badge in “Deciphering MANAGER, CORPORATE RELATIONS: night’s sleep. I disregarded the fact I’d Nurses’ Intentions.” In the world of dis- MEGAN LEE, EXT. 7253 often catch myself drifting off after lunch, ability, where chances are there is always AD MATERIALS: DEANNA FIKE, EXT. 7250 and I adjusted to constantly feeling achy something “wrong” with you from a medical and exhausted. I learned to be careful perspective, knowing when to head to the PRODUCTION with a glass of red wine and to embrace ER and when to pour yourself a stiff whis- PRODUCTION MANAGER: DEANNA FIKE coffee after 39 years of avoidance. key and call it a night is an essential skill. But this last year it all got to be too CIRCULATION much to ignore. Between struggling to “Knowing when to head to the CIRCULATION MANAGER: focus and immediately forgetting pas- BEVERLY SMITH sages I’d just read, the evidence was right ER and when to pour yourself CIRCULATION COORDINATOR: in front of my tired face: I had a problem. a stiff whiskey and call it a MARIA KURTZ I got a referral to a sleep doctor who affirmed what I knew: Sleep apnea is very night is an essential skill.” POSTMASTER: Send address changes to New Mobility, 120-34 Queens Blvd, #320, Kew Gardens common — even more so among quad- I sensed this nurse was genuinely wor- NY 11415. Subscription rates: $27.95/year; $35.95/ riplegics — and highly treatable with a ried about my wellbeing. That worried me. year in Canada; $67.95/year international via CPAP or BiPAP machine. Despite count- airmail. New Mobility (ISSN 1086-4741), Volume I did the basic math in my head: 102 31, Issue 316, is published monthly by United less people telling me how the breathing incidents per hour means I stopped Spinal Association, 120-34 Queens Blvd, #320, masks have grown less cumbersome and breathing for 10 seconds or longer, Kew Gardens NY 11415. Copyright 2020, all rights reserved. Reproduction without permission of any Lecter-ish, I’ve fervently resisted the no- almost two times every minute. material contained herein is strictly prohibited. We tion of even considering one. No more. I expected the results to be bad, de- welcome comments; we reserve the right to edit When I went to the hospital for my pressing even, but the idea of spending submissions. overnight sleep study, I was actually excited more than a third of my time not breath- Periodicals postage paid at Flushing, NY and additional mailing offices. for any mask — no matter how hideous — ing caught me off guard. Still unsure and the relief it might provide. Eight restless how to respond, I did my best to turn my www.newmobility.com hours of constant interruptions later, I rolled frown upside down. www.unitedspinal.org out with more questions than answers. “Is that at least a record?” I asked. 4 NEW MOBILITY life beyond wheels CONTRIBUTING EDITORS BEHIND THEWith Ian Ruder STORIES MICHAEL COLLINS MIKE ERVIN ROXANNE FURLONG ALEX GHENIS RICHARD HOLICKY life beyond wheels KATE MATELAN ALLEN RUCKER In Park City’s heyday, miners from around the country flocked ROBERT SAMUELS to the snowy Utah town, dreaming of silver and riches. These ERIC STAMPFLI days, the miners have been replaced by filmmakers and Hol- ELLEN STOHL lywood hoi-polloi who make an annual pilgrimage for the BOB VOGEL Sundance Film Festival. This glitzy scene isn’t the typical place LOREN WORTHINGTON you’d find a NEW MOBILITY reporter, but thanks to the tenacity of David Radcliff, we were there this February when disabil- ity took center stage. This is Radcliff’s first time writing for COMMUNITY PARTNERS NM, but he brings a long resumé that includes work for TV, KIM ANDERSON Netflix, magazines and more. He braved Park City’s hills with CHRISTIAAN “OTTER” BAILEY his wheelchair to capture the vibe and see what attendees had to say about the eventual MARTY BALL Audience Award-winner Crip Camp. “It was quite the adventure,” he says. “I think Crip TIFFINY CARLSON Camp’s win speaks to the value of having disabled people telling their stories.” LAWRENCE CARTER-LONG RORY COOPER When I started thinking about assigning this month’s JASON DASILVA feature on power soccer, a picture of Paula Larson DEBORAH DAVIS geared up for sled hockey popped into my head.
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