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NM's People of the Year Ogo Mobility Device Artist Richard Bell Adoption Options life beyond wheels Wheeling Forward: NM’s People of the Year Alex Elegudin & Yannick Benjamin newmobility.com JAN 2018 $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 THE 4FRONT TM OF A NEW ERA “I have been using a wheelchair for 35 years now – all different types – and the 4Front is by far the most advanced, comfortable and maneuverable chair I have ever driven.” – Stewart Lundy “The most advanced, comfortable and maneuverable chair...ever!” Take the 4Front TM challenge and test drive one today. (US) 866-800-2002 • (Canada) 888-570-1113 • quantumrehab.com • tfyi Serving the Community Since 1979 Products Answers Fun Abilities Expo Checks All the Boxes: Latest products and services Access to community experts Informative workshops Tools for seniors Adaptive sports FREE Inclusive dance ADMISSION Assistance animals Facts about therapeutic cannabis Fun activities for kids of all ages Register online today. It’s free! Toronto Los Angeles New York Metro Chicago January 19-21, 2018 February 23-25, 2018 May 4-6, 2018 June 29-July 1, 2018 Houston Boston San Mateo DC Metro August 3-5, 2018 September 21-23, 2018 October 26-28, 2018 Nov. 30-Dec. 2, 2018 NewMobility.indd 2 11/6/17 2:36 PM CONTENTSIssue 292 - January 2018 life beyond wheels COVER STORY PEOPLE OF THE YEAR Alex Elegudin and Yannick Benjamin met in rehab 15 years ago and forged a bond over a commit- ment to improve support systems for people with SCI. With innovative programs and services, their 24 nonprofit, Wheeling Forward, has done just that for thousands. SETH MCBRIDE shows how their distinct styles complement each other and how their selfless approach has built a tight-knit New York community. Cover and Contents Photos by Anabella Veress FEATURES DEPARTMENTS 4 BULLY PULPIT 16 A PASSION FOR ART 6 LETTERS Richard Bell didn’t fully embrace his passion for art until 8 NEWS after his SCI, and JENNI GOLD reports he is not wasting any time making the most of it. 9 PUBLISHER’S NOTE 10 EAT WELL 20 THE OGO IS HERE 11 REFRAMED Fast, responsive, fun — and a little dangerous. BOB 12 GEAR HACKS VOGEL checks out the Ogo and other Segway modifica- tions offering wheelers new mobility options. 14 HOW WE ROLL 40 MOTORVATION 32 THE ADOPTION OPTION 42 RESEARCH MATTERS BRIGHAM FORDHAM shares the highs and lows of going through the adoption process twice, and why you 47 CLASSIFIEDS shouldn’t let a spinal cord injury stop you. 48 CRIP BUZZ life beyond wheels BULLYBy Tim PULPITGilmer NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS WOUND THERAPY ‘MARATHON’ The good news: I don’t have urethral cancer. faces it needs a working support system, just The bad news: My body has sprung a leak — like a marathoner needs those helpers along EDITORIAL a small stage II pressure sore erupted over- the 26.2-mile course who hand out water PUBLISHER: JEAN DOBBS night into a complex stage IV sore. While all and snacks at strategic intervals. EDITOR: TIM GILMER seemed well on the surface — even to home NM’s senior editor, Ian Ruder, has been MANAGING EDITOR: JOSIE BYZEK health nurses — undermining and tunnel- stellar in feeding me helpful info and en- SENIOR EDITOR: IAN RUDER ing had been doing its dirty work unseen. couragement. Richard Holicky’s article on ASSOCIATE EDITOR: SETH MCBRIDE Many of you know the prognosis: months how to survive longterm bed confinement SENIOR CORRESPONDENT: BOB VOGEL confined to bed, followed by flap surgery [“Staying Positive: How to Survive Medical and more months in bed. So now, instead Complications,” April 2012] has given me of worrying that cancer may kill me in less CUSTOMER SERVICE hope. And United Spinal’s Resource Center than a year, I get to watch my quality of life put me in touch with Tricia Litzinger, wound Toll-free 800/404-2898, ext. 7203 slip away, day by day, for several months. care nurse and therapy bed expert, who is Whoever came up with “bed rest” as giving me an eye-opening education. a medical treatment? The same doctors ADVERTISING SALES who believed in bloodletting? Many of you 718/803-3782 know the effects of prolonged down time: MANAGER, CORPORATE RELATIONS: “Complex wound care loss of muscle mass and bone density, po- MEGAN LEE, EXT. 7253 tential skin breakdown in areas other than is the neglected child in AD MATERIALS: DEANNA FIKE, EXT. 7250 the off-loaded sore, poor digestion, pos- the health care family.” PRODUCTION sible infection, diarrhea from IV infusion PRODUCTION MANAGER: DEANNA FIKE therapy, loss of income from missed work, and depression. Ironically, it’s kind of like CIRCULATION chemo and cancer; if the disease doesn’t Prescribing bed confinement to heal complex stage III and IV pressure wounds CIRCULATION MANAGER: kill you, the treatment may. BEVERLY SMITH But I am just pissed off enough to fight can be challenging, says Litzinger, since no CIRCULATION COORDINATOR: my way through it. Complex wound care is recognized standards currently exist for MARIA KURTZ the neglected child in the health care family, evaluating the multitude of mattresses and with too few doctors practicing it, too few beds that claim to promote wound healing. POSTMASTER: Send address changes to New wound care nurses and clinics, and too few The result is nurses and doctors often can’t Mobility, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/ proven wound care treatments. It took me distinguish between products that are rehab year in Canada; $67.95/year international via six weeks to get into a wound care clinic, grade and others that are “pharmacy” grade airmail. New Mobility (ISSN 1086-4741), Volume 29, Issue 292, is published monthly by United another six weeks to be seen by a plastic — and insurance is slow to approve the most Spinal Association, 120-34 Queens Blvd, #320, surgeon, and I’m still fighting insurance to effective products, which are costly. Kew Gardens NY 11415. Copyright 2018, all rights get an appropriate wound therapy bed. Currently the National Pressure Ulcer reserved. Reproduction without permission of any material contained herein is strictly prohibited. We Meanwhile the threat of infection rises. Advisory Panel is developing evaluation welcome comments; we reserve the right to edit Fortunately, I have the support of col- standards, a project that began way back submissions. leagues on staff and a dedicated wife. With in 2001. In the meantime, if you have a Periodicals postage paid at Flushing, NY and additional mailing offices. their combined experience and help, I will complex wound like mine and need help, get through this latest health crisis. Heal- contact the United Spinal Resource Center www.newmobility.com ing a complex stage IV wound and keeping or send me a message. You will need all the www.unitedspinal.org it healed is a marathon, and everyone who support you can get in this marathon. 4 NEW MOBILITY life beyond wheels CONTRIBUTORSOur Staff and Freelancers CONTRIBUTING EDITORS MICHAEL COLLINS MIKE ERVIN ROXANNE FURLONG ALEX GHENIS life beyond wheels RICHARD HOLICKY KATE MATELAN ALLEN RUCKER ROBERT SAMUELS JENNI GOLD ERIC STAMPFLI Writer, editor, director, speaker, advocate — Jenni Gold wears ELLEN STOHL many hats. A wheelchair user since the age of 7 because of BOB VOGEL muscular dystrophy, Gold is an award-winning filmmaker and LOREN WORTHINGTON director member of the Directors Guild of America. She is the founder of Gold Pictures, a production company that recently produced the feature films CinemAbility and Aaah Roach. Gold COMMUNITY PARTNERS launched, “The Gold Test,” as a standard for Hollywood content KIM ANDERSON creators who are incorporating disabled characters. Her passion CHRISTIAAN “OTTER” BAILEY for storytelling and entertaining while enlightening an audience is MARTY BALL clearly evident in her work and achievements. TIFFINY CARLSON LAWRENCE CARTER-LONG RORY COOPER BRIGHAM FORDHAM JASON DASILVA Brigham Fordham is a law professor and attorney living in Phoe- DEBORAH DAVIS nix, Arizona. His research has explored the legal ramifications of TOBIAS FORREST freak shows, the intersection between new genetic technologies JENNIFER FRENCH and disability, and the ways that personal injury law affects how ALLISON CAMERON GRAY people view disability. In addition to teaching and writing, Ford- MINNA HONG ham assists private clients with intellectual property questions.
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