Life In Action, Jul-Aug 2011 by United Spinal Association

TechGuide

All-Terrain Wheelchairs

Threads

Jeans that Work

Family

Healthy Living: Recreation on Wheels Seated Workouts Finding Peace

Emotional Rescue

Access

Man Caves

Community

Successful Fundraisers

JULY-AUGUST 2011 www.spinalcord.org

J U LY / A U G U S T 2 0 1 1 â&#x20AC;˘ L I F E I N A C T I O N

Urotonic™ Surface Technology. It grabs water and doesn’t let go.

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Contact us today for a FREE sample pack! www.lofric.us • 877-4-LOFRIC 1.Waller L, Jonsson O, Norlén L, Sullivan L. Clean intermittent catheterization in spinal cord injury patients: long-term followup of a hydrophilic low friction technique. J Urol. 1995;153(2):345-348.

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

Life in Action is the membership publication of the National Spinal Cord Injury Association, a program of United Spinal Association. Our mission is to empower Americans with spinal cord injuries and disorders through active-lifestyle information, peer connection and advocacy. JULY/AUGUST 2011 / VOL. 1 / ISSUE 1

EDITORIAL

Editorial Director Jean Dobbs Editor Ian Ruder 718.803.3782, ext. 7224 / iruder@unitedspinal.org MS Life Editor Josie Byzek 718.803.3782, ext. 7226 / jbyzek@unitedspinal.org Web Editor & Staff Writer Tom Scott 718.803.3782, ext. 7223 / tscott@unitedspinal.org

ADVERTISING

SVP of Marketing & Communications Jeff Leonard VP of Sales Amy Blackmore Account Executive Steve Max 800.404.2898, ext. 7254 / smax@unitedspinal.org Account Executive Megan Lee 800.404.2898, ext. 7253 / mlee@unitedspinal.org Ad Materials 800.404.2898, ext. 7258 / art@unitedspinal.org

MEMBER SERVICES

SVP of Membership and Chapter Services K. Eric Larson (voice) 800.962.9629 (fax) 866.387.2196 membership@spinalcord.org

CIRCULATION

Circulation Manager Kim Brennan

For change of address, please contact Member Services.

OFFICERS

Chairman of the Board Lex Frieden Vice Chairman Denise A. McQuade Secretary Michael B. Kinne Treasurer Janeen Earwood President & CEO Paul J. Tobin

Membership Benefit Highlights Member benefits are continually being updated, so stay tuned for more. Current highlights include:

• Life in Action, which you are reading now, is our new bimonthly member publication, replacing SCI Life and Action magazine. We’ll work hard to deliver on our tagline’s promise to help you “Adapt/ Connect/Achieve” by offering you unique ways to interact with the larger SCI/D community and to share vital information about successful everyday life with a disability. Mailed free to U.S. addresses. • Connections to Chapters and Peer Support. Whether you joined our community as a member

of National Spinal Cord Injury Association or of United Spinal Association, you now have access to more than 60 NSCIA chapters and support groups nationwide. See pages 9-12 for a list of chapters and support groups, or visit www.spinalcord.org or call 800.962.9629 for the latest additions.

• Priority access to Spinal Cord Central. We do our best to answer everyone’s questions quickly, but if you let us know you’re a member, we’ll move you to the top of the list! • Member pricing on New Mobility magazine, Life in Action’s awardwinning sister publication. Members pay only $14.95/year (regular price is $27.95) — just call toll-free 888.850.0344, ext. 209, and mention that you are a member. • Discount at Able to Travel, our in-house travel agency, where you’ll

Touring by Handcycle: Oregon, Ireland and Life on the Road

life beyond wheels

Access to Health Care Testing Amtrak A Wheeler’s Retreat Service Dogs Gone Wild

work with a travel agent knowledgeable about the mobility and access issues that can arise during a trip. Members pay only $25 per person! newmobility.com

• Free monthly e-newsletter. Beginning in September, our e-newsletter

will take on a new look and feel with expanded coverage of news and resources. Just make sure we have your current email and that we’re on your email “safe list.”

Individual membership is free and open to people with spinal cord injuries or disorders, family members, caregivers and professionals. Learn more or join at www.spinalcord.org, or call 800.962.9629.

DIRECTORS

Marty Ball, Tom Cooke, David C. Cooper, Carmen DiGiovine, PhD, Janeen Earwood, David Estrada, Esq., Chris Fossel, Gretchen A. Fox, OTR, Lex Frieden, Andy Hicks, Michael B. Kinne, Michele A. Leahy, Samuel Lin, MD, PhD, Patrick W. Maher, Denise A. McQuade, Donna L. Messinger, Terence J. Moakley, Christine Moyle, Ronnie E. Raymond, Edmund J. Rowan, Laura G. Schwanger, Paul J. Tobin (Ex-Officio), Martin Young, Leonard F. Zandrow, Esq. © 2011 United Spinal Association. LIFE IN ACTION is published bimonthly (Jan/Feb, Mar/Apr, May/ Jun, Jul/Aug, Sep/Oct and Nov/Dec) by United Spinal Association, 75-20 Astoria Boulevard, East Elmhurst, NY 11370. Standard class postage is paid in Lebanon Junction, KY. POSTMASTER: Send address changes to United Spinal Association, Membership Department, 7520 Astoria Boulevard, East Elmhurst, NY 11370. Subscription rates: Domestic: $20, Foreign: $55 (U.S. funds drawn on a U.S. bank).

DIRECT SERVICE OFFICES INFORMATION AND REFERRAL

Spinal Cord Central (voice) 800.962.9629 (fax) 866.387.2196 help@spinalcordcentral.org www.spinalcordcentral.org

WHEELCHAIR MEDIC Fort Totten, NY 718.352.1623 Castle Point, NY 845.831.2000, ext. 5394 www.wheelchairmedic.com

CONGRESSIONAL LIAISON OFFICE Washington, DC 202.556.2076

ABLE TO TRAVEL

a program of United Spinal Association

888.211.3635 www.abletotravel.org

VETERANS SERVICE OFFICES M-F 8:30 a.m. to 4:30 p.m. or as noted.

Buffalo, NY 716.857.3338 or 800.807.0191 East Orange, NJ A service ofﬁcer will be at the East Orange VAMC on Thursday afternoons Newark, NJ 973.297.3387 or 800.807.0192 Wednesday 8:30 a.m. to 4:30 p.m. New York, NY 212.807.3163 or 800.807.0192 Philadelphia, PA 215.381.3037 or 800.807.0190 Naples, FL 239.455.6488 www.vetsfirst.org

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JUN 2011 $4

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Craig Hospital in Denver is dedicated exclusively to specialty rehabilitation and research for people who have sustained devastating spinal cord (SCI) and traumatic brain injuries (TBI). Craig rebuilds lives, leading to unsurpassed outcomes, independence, productivity, and life satisfaction. These outcomes also result in high levels of satisfaction, value, and cost savings for patients, families, employers, insurance companies, and society. Craig’s focused expertise and in-depth programs, extraordinary longevity of physicians and staff, family inclusion, and real world skills training all contribute to the success of our patients. Craig is more than a hospital — it is a powerful culture of normalization, healing, and a remarkable integration of medicine, education, recreation, and life. As a premier leader in the field of rehabilitation for more than five decades, Craig Hospital serves patients from all 50 states and several foreign countries. Craig is federally designated as a Model Systems Center for SCI and TBI, has been ranked in the Top 10 Rehabilitation Hospitals for 22 consecutive years by U.S. News and World Report, and has twice consecutively achieved the highly coveted Magnet® Recognition. Craig is also pioneering cutting-edge research and advances in adaptive technology. As a non-profit, independent hospital, the Craig “family” delivers the highest quality of rehabilitation treatment available anywhere. Ask anyone who has ever been associated with Craig Hospital and you’ll receive a consistent answer: Craig Hospital is a very special place.

3425 South Clarkson Street | Englewood, Colorado 80113 | 303-789-8000 |

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[contents]

Editor’s Note

a united voice Ian Ruder

Cover Photo by Christopher Voelker/Voelkerstudio.com Hair and Makeup by Melanie Manson/MelanieManson.com

hile the rest of the country has wilted away in 100 degree temperatures, the Pacific Northwest has endured a summer just as perplexing for its utter lack of heat. Editing and preparing this first issue of Life in Action from my small home office in Portland, Ore., I’ve often found myself cursing the summer clouds and praying for the very heat I know most of America is dreading. While there is no true remedy for the absence of the sun, working on Life in Action has come pretty close. Every day I hear from NSCIA and United Spinal Association members. Some share ideas or topics they would like to see addressed. Some have questions. Some simply write to express their enthusiasm or to pass along good wishes. All the interactions have reinforced the importance of Life in Action and motivated me to make it the best possible membership publication it can be. I’ve heard from many loyal readers of SCI Life and Action, the two publications Life in Action is replacing, who were disappointed to see them leave. My hope is that in time Life in Action will embody the best of its predecessors, offering both the personal insight and feature-focus of Action and the sense of connectedness and community of SCI Life. One key to Life in Action’s success in achieving these goals will rest with you, the members. We need to know what you want to read about. We need to know what you think is working and what isn’t. Do you know a member who is doing something cool or unique? Is there a subject you’d like to see us investigate? Tell us. You can always find Life in Action on Facebook at www.facebook.com/lifeinaction or you can simply email me at iruder@unitedspinal.org. Together we will build on our collective experience and create a publication that makes a difference for you, our members, and for our larger community.

Gym of the (near) future: Page 18

HEALTHY LIVING

SOLUTIONS

14 Yoga: Benefits Beyond the Body It’s one of those strange truths: Getting in touch with your body can bring you a peaceful state of mind.

16 Fitness: Exercise DVDS and Gyms Sometimes home is the best place to work out — and we’ll show you how — but accessible gyms are expanding the options.

20 Sports and Rec: A Passion for Play Chapters explore the health benefits of community and competition.

COMMUNITY 6 Letters to the Editor

9 Chapter News

6 Peer Perspective

9 Chapter Listings

7 United Spinal in Action

10 Members in Action

8 Note to Members

13 Family Matters

22 22 23 24 26 28 30 32 33 34 35 36 37 38

Ask Anything Spinal Cord Central Threads Access Dating/Relating TechGuide MS Life SCI Research Ask VetsFirst Travel Marketplace Business Members Hospital Members Last Laugh

[contributors]

Cover photographer Christopher Voelker specializes in entertainment industry photography at the Los Angeles studio he runs with his wife, makeup artist Melanie Manson.

Freelance writer and editor Kate Matelan, a graduate of Bucknell University, recently attended NYU’s summer publishing program, where she put her creativity and style sense to the test.

Ben Mattlin is an NPR commentator and contributor to several magazines. Born with spinal muscular atrophy, he is a Harvard graduate who lives in Los Angeles with his wife and daughters.

Former NSCIA communications associate Santina Muha is pursuing a career in media. She can be seen as a featured contestant in the documentary Defining Beauty: Ms. Wheelchair America.

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[community]

Letters

Peer Perspective

Farewell, Action, Welcome, Life in Action The lady in the wheelchair on the cover [of this issue] is sitting erect joining her hands in “Namashkar.” In Indian culture, this practice is equivalent to saying “hi.” This signals warm welcome. As an Indian with a complete spinal cord injury (T6) who enjoyed Action, I hope to see more of my nation in coming publications. Wishing all the best. Sarmistha Sinha Kolkata, West Bengal, India Rabbi Mona Decker: Repairing the World

What Goes Into New Accessible Car Design? Fighting Osteoporosis with Diet

May/June 2011

www.unitedspinal.org

A Publication of

PCA Dilemma Jim Laughlin’s letter in the March/April issue of Action is absolutely issue No. 1 in my life. As a college professor with MS trying to maintain an active professional life, finding occupations Roughing It: that home assistants can 5 Great Parks for Accessible Camping really assist with during the time blocks they need to be hired for is an additional project. And finding companions for travel to conferences and libraries, as well as leisure or other personal reasons, is the most problematic side of the disease for me. Having spent a large part of my 58 years acquiring the skills to travel independently and live abroad for

long periods of time, trying to regain dependence involves a different skill set. Any shared experience of this order will be most welcome. Melissa T. Smith Youngstown, Ohio

Beyond ‘Suicide Doors’ Rebecca Kellogg’s article “What Goes Into New Accessible Car Designs?” (Action, May/June 2011) was interesting. Sadly, it seems to me auto designers are overthinking the process. For example, I have paraplegia and use a manual, folding wheelchair for mobility, and I drive a Honda Element that is modified only by the installation of hand controls. I selected the Element for one major reason: its reverse-hinge rear doors. I wish that Ms. Kellogg, or another reporter, would ask someone who has influence on auto designs, why there are not more autos with the reverse-hinge rear door. To me, reverse-hinge doors are truly a universal design that is accessible to many people with mobility impairment without expensive aftermarket conversions. Plus, the design not only accommodates a variety of drivers who have a variety of disabilities — it even allows drivers who are among the temporarily able-bodied to drive. Could it be that we can’t get beyond thinking of reverse-hinged doors, as “suicide doors”? If so, then it’s time. Or, is there something more insidious going on here? L. Eley Driggers Shenandoah, Texas

Survey Results: What You Asked For in Life in Action Earlier this year, when Life in Action was just a concept, we invited NSCIA and United Spinal members to take part in a survey devised to help us understand what you, the members, want to read about. More than 700 of you shared your ideas for the new publication and a little about yourself (67 percent of you have a spinal cord injury; 7 percent have multiple sclerosis; 9 percent have another disability; and 17 percent have no disability). We appreciate everyone’s answers and comments, and think you will see their impact in this and future issues. Here are the top ten topics you requested, ranked in order: 1. Assistive technology 2. Health/fitness 3. Cure research 4. Travel 5. Access

6. Advocacy/legislative updates 7. Recreation 8. Home modification 9. Coping tips and strategies 10. Health care legislation

What do you think? If you didn’t get a chance to answer the survey, write to us at lifeinaction@united spinal.org or 75-20 Astoria Blvd., East Elmhurst, NY 11370 and tell us what is important to you. 6

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Q. I need to raise money for a modified van. Friends from my community have held a couple of small fundraisers, but I’m still $30,000 short. Are there other options? I don’t currently have a job outside the home (I’m a mom) so voc rehab turned me down. — Sarah Garrison, Charlotte, NC

[Oregon Member]

Bethany Brown Responds It is wonderful your friends have already done a couple fundraisers for you! The support of your friends and community will be vital in reaching your goal. Depending on your situation, you may need to reach beyond your local community to raise the funds. There is no better place to do this than on the web! Check out online fundraising sites like Giveforward. com, Gofundme.com or Chipin.com. These websites allow you to create a page to tell your story and ask for support. You are able to collect online donations securely and promote your page through your email, Facebook and Twitter accounts. Ask your friends to promote these pages as well to expand your reach to even more people. These websites do charge a small processing fee, but it is well worth it for how simple they make the donation process. I also encourage you to create a unique fundraising event in your community. Use this opportunity not only to raise funds but also to gain media attention to drive even more people to your online giving page. Think of something unique to you: If you are a wheelchair user, consider a wheel-a-thon or a local celebrity wheelchair race with radio and TV personalities as well as high-profile business members. Not only are these fun events, but they are also more than likely something your community has not seen before. Be creative and best of luck! Bethany Brown runs Mobility Unlimited, a nonprofit that provides funding for durable medical equipment to physically disabled working adults in Oregon. If you have experience that can help your peers, please share it with us at lifein action@unitedspinal.org. For an upcoming issue: What insight can you offer others about hiring PCAs from Craigslist?

United Spinal in Action In May, UsersFirst — the national nonprofit organization that has been fighting for people with disabilities to have access to appropriate mobility equipment since 2007 — became a program of United Spinal Association. In August the program launched a new website as a springboard for its policy initiatives, funding guidance and advocacy opportunities to strengthen the voice of those using mobility devices. “People with disabilities continue to be restricted to the wrong mobility equipment by insurance companies that don’t care about their individual needs,” says UF executive director Ann Eubank. The solution? “Demanding more choices as consumers.” To learn how you can join this movement to effect change, visit UsersFirst at www.usersfirst.org.

United Spinal Settles MTA Suit

Taxi Struggle Continues United Spinal and several other plaintiffs representing those with mobility impairments successfully defeated an attempt by the New York City Taxi & Limousine Commission to get a U.S. District Court judge to dismiss the case accusing it of discrimination on the basis of a disability. This means that the case against the TLC will proceed and eventually, if not settled, work its way to trial. The Americans with Disabilities Act prohibits local governments like New York City from excluding people with disabilities from their

Photos by Ahvi Spindell

The New York Metropolitan Transportation Authority recently agreed to the installation of an elevator at one of New York City’s landmark subway stations at Dyckman Street to improve access for wheelchair users and other people with disabilities. The agreement settled the litigation between United Spinal Association — represented by Disability Rights Advocates — the MTA and New York City Transit Authority.

When stations are renovated, the Americans with Disabilities Act provides that a portion of the renovation costs be spent on accessibility. “Installing elevators during scheduled station renovations goes far to promote transportation access for people who use wheelchairs,” says James Weisman, senior vice president and general counsel for United Spinal. “This is a significant resolution that will enhance subway access for all users of the station with mobility challenges.” Of the 468 subway stations in New York City, only 86, or 18.5 percent, are currently fully accessible to people with disabilities. According to United Spinal and its attorneys, making accessible improvements incrementally during station renovations, will keep the MTA compliant with the ADA requirements.

Photo by Ahvi Spindell

‘UsersFirst’ Joins United Team

United Spinal Association’s Kids Sports Spectacular on August 13 drew dozens of participants, families and volunteers to Philadelphia’s Wells Fargo Center, where kids got the chance to try handcycling, martial arts, basketball and more. Left: 4-year-old Mather Stover-Ling, born with spina bifida, celebrates playing hockey with his mom. Right: Gavin Toney from West Chester, Pa., returned for his third Kids Sports Spectacular to hit one out of the park. For more, visit www.unitedspinal.org.

Jessica Haber, who has lived with a spinal cord injury for 20 years, was joined at United Spinal Association’s New York Independence Expo by her husband and their two sons. Haber, a United Spinal member, investigated every booth from Wheelchair Medic to Canine Companions. She came looking for a new van, but was thrilled to discover adaptive fitness equipment, too. A second 2011 Independence Expo will be held Sep. 23-24 in Orlando, Fla. Visit www. independenceexpo.org for details.

programs, unnecessarily providing a separate program for people with disabilities, or providing a program that is not comparable to the program available to the public. The TLC regulates a yellow “hail a cab” system comprised of over 13,000 vehicles. Of that number, only 231 taxis are accessible to those who use wheelchairs or scooters. There is no way to call an accessible taxi and reserve a ride; one must hail an accessible cab, though less than 1.8 percent of them are available to those with mobility impairments. Moreover, the ADA regulations require vans to be accessible when used in taxi service, yet the TLC has permitted 1,100 Toyota Sienna vans to be brought newly into service without accessibility features. And, in a move many advocates have called even more discriminatory, the TLC awarded its “Taxi of Tomorrow” prize to an inaccessible Nissan van that, according to the TLC, will be New York City’s taxi for 10 years, beginning in 2013. J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

community

Note to Members

Toll-free (888)211-3635

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

members, caregivers and s I write this column, professional contacts to join I find myself having NSCIA, which has a broader to resist talking more membership. Among the about this exciting benefits is the ability to now new publication you are now connect with NSCIA’s more reading. But I’ve promised than 60 local chapters and to let our editor Ian Ruder do support groups. that, so check out his column Those who were already on page 5. I will simply thank part of NSCIA now have acIan, our editorial director, Jean cess to a range of new proDobbs, and the rest of our comgrams and services. United munications team for the work Spinal’s in-house travel they put into this new member agency, Able to Travel, meets publication. the accessibility needs of For many of you, this may business and leisure travelers be the first tangible benefit of our community with disabilities — includthe recently announced merger is growing ing air travel, transportation, of National Spinal Cord Injury cruises, tours and excurAssociation and United Spinal K. Eric Larson sions, hotel accommodations Association. While this one is SVP of Membership and and access to vital medical worth celebrating, let me asChapter Services equipment. sure you there is more to come! People with disabilities With the merging of have historically had limitNSCIA and United Spinal ed freedom when choosing equipment critical Association, the addition of New Mobility to their quality of life and independence due magazine and the even more recent addition of to government and health insurance company the UsersFirst program — our community is restrictions. UsersFirst advocates for imsurely growing. proved access to seating and mobility equipToday, NSCIA is the membership program ment and denounces the long-established of United Spinal Association, now the larg“one-size-fits-all” mentality when it comes to est nonprofit membership-based organization the selection of wheelchairs and other mobildedicated to helping people living with spinal ity devices. cord injuries or disorders across the country. Members who are veterans can now acYou are part of a growing, vibrant community, cess United Spinal’s VetsFirst program, which and have access to a wide array of resources. advocates for all generations of veterans, inWe are in the strongest position in our history cluding individuals living with post-traumatic to fulfill our mission of empowering all Amerstress disorder and traumatic brain injuries. icans living with SCI/D to achieve the highest VetsFirst’s network of National Service Ofpossible quality of life. ficers provides free assistance, resources and NSCIA and United Spinal were both built representation for veterans struggling to navion strong foundations — never losing sight of gate the intricate and often confusing Veterans our founders’ efforts to communicate the voice Affairs claims process. The program supports of the disability community and to transform the public’s perception of wheelchair users. We more than 2,000 veterans annually through its call center and online help desk. are committed to retaining the rich heritage Members will receive priority access to and history of both organizations, while growinformation, resources and personal support at ing and adapting to meet the future needs of www.spinalcordcentral.org, including ongoing all Americans living with SCI/D. updates on member programs and benefits. Whether you got to this point as a member We are a membership-driven organizaof United Spinal Association or NSCIA, or tion and serving our membership is the force through a program like VetsFirst or UsersFirst, behind everything we do. We look forward to you are now part of a combined 35,000-plus membership base that includes individuals of hearing from you and helping make your memall ages and backgrounds who are driven, indebership an effective source of information, pendent and active participants in our society. support and advocacy. To learn more, please Now members who have been part of Unitvisit www.spinalcord.org, or contact us at ed Spinal and VetsFirst can invite their family 800.962.9629 or membership@spinalcord.org.

Chapters and Support Groups Photo by Loren Worthington/worthingtonvisuals.com

Chapter News

ARIZONA SUPPORT GROUPS

DISTRICT OF COLUMBIA CHAPTER

East Valley Support Group (COMPASS) Phone: 602.241.1006 Contact: Pauline Staples Email: plstaples@msn.com

SCI Network of Metropolitan Washington, NSCIA Attn: SCIN, 14 Wolf Drive, Silver Spring, MD, 20904 Phone: 240.429.6141 Contact: Kimball Gray Email: kimballg@ecnv.org

Flagstaff Support Group Phone: 928.527.8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls 7227 N 16th St #107, Phoenix Phone: 602.943.1012 Contact: Diane Prescott Support Group Phone: 623.209.0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, AZ 85006 Phone: 602.239.3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, 91402 Phone: 818.267.3031 Contact: Michele Altamirano Website: www.wyngs.org Email: wyngs4sci@msn.com CALIFORNIA SUPPORT GROUPS Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, CA 91769 Phone: 818.267.3031 Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, CA 93715 Phone: 559.459.6000 Ext. 5783 Contact: Ray Greenberg Email: rgreenberg@communitymedical.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, CT 06492 Phone: 203.284.1045 Contact: Jeff Dion Website: www.sciact.org Email: nscia@sciact.org

FLORIDA SUPPORT GROUPS Peer Support Contact 313 Spider Lily Ln, Naples, FL 34119 Phone: 239.353.5894 Contact: Mindy Idaspe Email: scidconsultant@hotmail.com Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, FL 32901 Phone: 321.984.4600 Contact: Ellen Lyons-Olski Email: ellen.lyons-olski@healthsouth.com

Iowa Rec Clinic Going Strong When was the last time you went skiing, hunting, golfing, bowling and off-roading in the same day? If you answered never, you’ll have a chance to rectify that glaring bucket list omission at this year’s 7th Annual Adaptive Sports and Recreation Clinic. The event, hosted by the Spinal Cord Injury Association of Iowa, keeps growing every year, offering more and more opportunities to try out the latest in adaptive sports and recreation. Chapter president Angie Plager says she is hoping to build off last year’s stellar turnout of 39 chair users and around 100 attendees. “Our goal as a chapter is to bring people together that have a spinal cord injury or a disease and their families and their friends and help them realize and achieve the maximum independence that they want,” she says. “We want them to understand that it doesn’t have to be all about medical issues. Life is fun, let’s live it up.” The event is Aug. 27 at Raccoon River Park in

Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, FL 32308 Phone: 850.656.4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, FL 32804 Phone: 407.823.2967 Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : 407.623.1070 Contact: Carl Miller HealthSouth - Support Group 90 Clearwater Largo Rd., Largo, FL 33770 Phone: 727.588.1866 Contact Vicki Yasova Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, FL 33601 Phone: 800.995.8544 GEORGIA SUPPORT GROUPS Columbus SCI Support Group Phone: 703.322.9039 Contact: Ramona Cost Email: rvcost@mchsi.com Central Central GA Rehab Hospital 3351 Northside Dr., Macon, GA 31210 Phone: 800.491.3550 Ext. 643 Contact: Kathy Combs

West Des Moines, Iowa. Admission is free for anyone in the state of Iowa living with SCI/D. For more information, call 515.554.9759 or email SCIAofIowa@hotmail.com.

Cody Unser

New Event in South Carolina After over a year of planning,

the South Carolina Spinal Cord Injury Association is excited to host Wheeling In New Directions (WIND), a new all-day event with speakers, hands on exhibitions and discussions focusing on getting the most out of your life after spinal cord injury. Former Action columnist Scott Chesney is the keynote speaker and will kick off a day filled with exciting choices for participants. Cody Unser, the granddaughter of race car legend Al Unser and daughter of two-time Indy 500 champion Al Unser Jr., will lead a breakout session on how scuba diving saved her life after she was paralyzed, and she’ll emcee a chair-centric fashion show. Other speakers will address the latest in SCI research, seating, travel and more. The event is Sat., Oct. 15 from 10-5 at Saluda Shoals Park in Columbia, S.C. For more information, call toll-free 866.445.5509, email scscia@att.net, or visit www. spinalcord.org/wind.php.

ILLINOIS CHAPTER

Email: rjackson@ci.gary.in.us

SCI Association of Illinois 1032 South LaGrange Road, LaGrange, IL 60525 Phone: 708.352.6223 Contact: Mercedes Rauen Website: www.sci-illinois.org Email: SCIInjury@aol.com

Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, IN 46385 Phone: 219.531.0055 Contact: Joe White Email: heyjoewhite@comcast.net

INDIANA SUPPORT GROUPS Calumet Region Support Group 2109 Cleveland St., Gary, IN 46406 Phone: 219.944.8037 Contact: Rita Renae Jackson

IOWA CHAPTER SCI Association of Iowa 3936 NW Urbandale Dr, Urbandale, IA 50322 Phone: 515.554.9759 Contact: Angie Plager Website: www.spinalcordiowa.org

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community

Members in Action [Virginia Member] Bryant Neville: Rallying the Community He quickly put his degrees and savvy to work for the local Bank of McKenney. The bank was in a precarious position following the embezzlement conviction of a former president. “When I came here my boss said, ‘I don’t know if I can promise you a job for more than a month or so, but we’re going to try to save this. If you want to take a chance, great, just understand we may not be open in a month or two,’” says Neville. Twenty-two years later, the bank has expanded from one to six locations, and Neville is an executive vice president and the chief financial officer. “I love coming to work every day,” he says. “It’s like a family.” Still, Neville was missing something. ryant Neville had considered writing “[Early on] I decided the best thing to do a memoir many times in the 30 years was to work on a career and forget about the since he was paralyzed, but he kept female relationships for a while,” he says. “That putting it off until it felt right. Last year, with his first baby on the way, a thriving home life worked well. I got through college, I got a nice career and got into my later 30s, and then it and a rewarding career, Neville decided the struck me again: You’ve got a lot of stuff, but time had come. you don’t have anybody to share it with.” “I started doing some research because I It took an unsuccessful foray into online figured, since my life was going so well, that dating to help Neville realize that the person everything had to be on the upswing for he had been looking for was right under his people with disabilities,” he says. “What I nose. Years earlier, Neville had befriended found out was kind of shocking.” Shortened a married couple at school. The couple had rehab stays and questionable insurance a daughter, Tanya, who was about 12 years priorities led Neville to wonder how newly old at the time. Neville, then 24, got to know injured people with SCI could possibly find the girl while hanging their way like he did. out with her parents and “I decided maybe “The possibilities are remembers laughing at the best thing to do endless. You can still one of her bold predicwas to rally the comachieve whatever you tions. “She had a little munity and try to help crush on me, and she want to achieve.” some other folks,” he told her grandma and says. “We need a voice. me that we were going to be married one We need to do something to help everybody know what’s happening and what they can do day,” he recalls. “It was funny at the time.” Neville and Tanya remained friends as to change it.” they grew older. She gave birth to twins, but Neville decided that writing a book didn’t marry the father. Later, when Tanya wasn’t enough. He organized a 5K walkwas in her 30s, the two started dating. Nevwheel-run to be held Sept. 17 in his small ille and her twins got along great, and the Virginia community. The fundraiser will “destined” couple was soon married. This benefit NSCIA. Neville hopes to raise awareness and inspire his community as it inspired year Neville realized a lifelong dream he had worried would escape him when Tanya gave him 30 years ago. birth to his son, Kenneth. “I don’t know how In 1981 Neville was 17 when a rollover you put that in words,” he says. “That was car accident broke his neck, making him the culminating experience — the only thing a C3-4-5 quadriplegic. While he spent six I didn’t have in my life that I really wanted.” months rehabbing, the Dinwiddie County With his life right where he wants it, Nevcommunity rallied around him to raise more ille is excited to focus on raising awareness. than $20,000 for his family. More importantly, the community provided him the sup- He’s hoping his own experience will help others reach their potential. “The possibilities port to go on. “It was unreal,” he says. are endless,” he says. “You can still achieve With everyone behind him, Neville finished whatever you want to achieve; it’s just a high school, and graduated summa cum laude matter of figuring out how you can get from from the local community college with degrees point A to point B.” in computer programming and accounting.

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

Email: SCIAofIowa@hotmail.com KANSAS CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: 913.491.5667 Contact: Linda Klaiber Website: www.spinalcord.org/ kansascity Email: gkcscia@gmail.com The Greater Kansas City Spinal Cord Injury Association manned booths at the start and finish lines of the 37th Annual Hospital Hill Run earlier this summer in Kansas City. Chapter members met, greeted and helped runners while providing education for the public about SCI. KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, KY 40202 Phone: 502.588.8574 Contact: David Allgood, President Website: www.derbycityspinalcord.org Email: david.allgood@amerihealthmercy.org KENTUCKY SUPPORT GROUP Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: 270.205.5675 Contact: Anndrea Coffman Email: whelygurl@yahoo.com LOUISIANA CHAPTER Louisiana Disability Alliance, NSCIA P.O. Box 86632, Baton Rouge, LA 70817 Phone: 225.436.4519 Contact: Glenn Gaudet MARYLAND SUPPORT GROUP Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, MD 21207 Phone: 410.448.6307 Contact: Jenny Johnson Website: www.kernan.org/kernan/ MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, MA 01801 Phone: 781.933.8666 Fax: 781.933.0043 Contact: Kevin Gibson Website: www.sciboston.com Email: sciboston@aol.com The Greater Boston Chapter will pay tribute to the memory of former chapter and board member, Dave Kimball, with the Dave Kimball Memorial Golf Tournament on Sep. 30 at Sandy Burr Country Club in Wayland, Mass.

MASSACHUSETTS SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, MA Phone: 781.933.8666 Website: www.sciboston.com/ support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, MA Phone: 617.573.2081 Phone: 857.222.5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, MA Phone: 508.871.2000 Ext. 2165 Contact: Deb Website: sciboston.com/support.htm MICHIGAN CHAPTER MSCIA 1938 Woodslee Drive, Troy, MI 48083 Phone: 248.288.2270 Contact: Stacey Murphy Email: smurphy@americaremedical. com MISSISSIPPI SUPPORT GROUP Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, MS 39532 Phone: 601.969.4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: mbahret@yahoo.com MISSOURI CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: 913.491.5667 Contact: Linda Klaiber Website: www.spinalcord.org/ kansascity Email: gkcscia@gmail.com MISSOURI SUPPORT GROUP Southwest CIL 2864 S. Nettleson Ave., Springfield, MO 65807 Phone: 417.886.1188 Contact: Marion Trimble Website: www.swcil.org Email: mtrimble@swcil.org NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA 21 Chenell Drive, Concord, NH 03301 Phone: 603.225.3304 Contact: Debbie Krider Email: debbie@gsil.org Website: www.gsil.org/nhnscia.htm

NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: 585.275.6097 Contact: Karen Genett Email: rochesternscia@yahoo.com Phone: 585.275.6347 Contact: Amy Scaramuzzino Email: ascaramu@frontiernet.net New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, NY 10029 Phone: 212.659.9369 Contact: James Cesario or John Moynihan Website: www.nycspinal.org Email: NYCspinal@NYCspinal.org NEW YORK SUPPORT GROUPS SCI Network of Central New York ARISE, 635 James Street, Syracuse, NY 13203 Phone: 315.464.2337 Contact: Tammy Bartoszek Email: bartoszt@upstate.edu Phone: 315.247.0927 Contact: Maria Froio Email: scin4cny@yahoo.com Long Island Spinal Cord Injury Phone: 631.221.9255 Contact: Ron Quartararo Website: www.testaverdefund.org Email: info@testaverdefund.org

Phone: 919.350.4172 Contact: Deborah Myers Email: dmyers8@triad.rr.com Contact: Karen Vasquez Email: kvasquez@wakemed.org OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd., Swanton, OH 43558 Phone: 419.875.4029 Contact: Hank Burney, President Website: www.nwonscia.org Email: bjbiii77@windstream.net Phone: 419.531.6401 Contact: Becky Gay Email: beckkevn1@aol.com Northeast Ohio Chapter, NSCIA PO Box 934, Chesterland, OH 44026 Phone: 440.442.5550 Contact: Jeff Schiemann Email: jjscpajd@aol.com

Keeping You & Your Loved One…

HOME

The chapter held its 16th Annual SCI Forum, entitled “Yes, Ni Hao to Wellness,” Aug. 5. Chock full of SCI-themed breakout sessions and mingling, the allday event was a success.

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Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, OH 44484 Phone: 330.841.3856 Contact: Rebecca Lebron Email: rlebron@forumhealth.org NORTH CAROLINA CHAPTER Phone: 330.889.2158 halfpage_Moses_9.25x5.25_lifeinaction.qxp:Layout 1 7/12/11 5:59 PM Contact: Rick Ackerman NCSCIA 3701 Wake Forest Rd., Raleigh, NC 27609 Email: bird196@aol.com

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community PENNSYLVANIA SUPPORT GROUPS

SOUTH CAROLINA SUPPORT GROUPS

Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, PA 16602 Phone: 800.873.4220

Chester Area SCI Support Group Purity Presbyterian Church on 135 Wylie Street, Chester, Chester, SC, Phone: 803.385.2270 Contact: Bill McDonough Email: billandlee@truevista.net

Greater Pittsburgh Rehab Hospital 2380 McGinley Rd., Monroeville, PA 15146 Phone: 800.695.4774 Contact: Kristy Nauman Email: kristy.nauman@healthsouth.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, PA 19131 Phone: 215.477.4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, PA 19102 Phone: 215.587.3174 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, PA 17404 Phone: 800.752.9675 Ext. 720 Phone: 717.767.6941 Contact: Tammy Derk Email: tammy.derk@healthsouth.com SOUTH CAROLINA CHAPTER SCSCIA 2935 Colonial Drive, Columbia, SC 29203 Phone: 866.445.5509 (toll free) Phone: 803.252.2198 Contact: Diane Epperly, Executive Director Email: scscia@att.net Contact: Rafe Ellisor, Chairman Email: rafe.ellisor@healthsouth.com Website: www.scspinalcord.org

Conway Peer Support Group New Horizons Center, 1021 Third Ave., Conway, SC Phone: 843.488.1309 Contact: Ellen Leftwich Email: leftwich@sccoast.net Florence, SC Area SCI Support Group HealthSouth Rehabilitation Hospital 900 East Cheves Street, Florence, SC Phone: 843.679.9932 Contact: Ronnie McFadden Email: ronnielmc@yahoo.com Greenwood Peer Support Group Burton Center, 2605 Highway 72/221 East, Greenwood, SC Phone: 864.942.7124 Contact: Kristy Lawson Email: klawson@burtoncenter.org Midlands Peer Support Group 2935 Colonial Drive, Columbia, SC Contact: Diane Epperly Phone: 803.252.2198 or 866.445.5509 Email: scscia@att.net

101 St. Matthews Lane, Spartanburg, SC Phone: 864.595.1947 Contact: Dot Colson Email: DColson@Dennys.com Trident Peer Support Group 1812 Sam Rittenberg Blvd., Charleston, SC Phone: 843.792.2605 Contact: Richard Aust Email: aust@musc.com TENNESSEE CHAPTER Tennessee Spinal Cord Injury Association 105 Ballentrae Dr., Hendersonville, TN 37075 Phone: 615.947.6204 Contact: Cheryl Stowe, Executive Director Email: cherlystowe@yahoo.com Website: www.standuptn.com TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, TX 79936 Phone: 915.298.7241 Contact: Sukie Armendariz Contact: Ron Prieto Email: riograndenscia@aol.com VIRGINIA CHAPTER

Orangeburg, SC Area SCI Support Group 3000 St. Matthews Road, Orangeburg, SC Phone: 803.829.2043 Contact: Rebecca Felder Email: Rebecca.felder@yahoo.com

Spinal Cord Injury Association of Virginia P.O. Box 8326 Richmond, VA 23226 Phone: 804.726.4990 Fax: 888.752.7857 Contact: Steve Fetrow Email: steve.fetrow@sciava.org Website: www.sciava.org

Spartanburg, SC Area SCI Support Group

Chapter president Steve Fetrow was one of

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L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

a number of members of the Spinal Cord Injury Association of Virginia to be featured in a 35-minute television program on SCI that ran on local television. The video is available online at http://henrico-va.granicus.com/MediaPlayer.php?publish_id=143. WASHINGTON SUPPORT GROUP SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St., Seattle, WA 98195 Phone: 206.685.3999 Contact: Cynthia Salzman Email: Csalzman@u.washington.edu WEST VIRGINIA SUPPORT GROUP West Virginia Mountaineer Support Group P.O. Box 1004, Institute, WV 25112 Phone: 304.766.4751 Contact: Steve Hill Email: steveh@mail.drs.state.wv.us WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, WI 53215 Phone: 414.384.4022 Contact: NSCIA-SWC Office Email: office@spinalcordwi.org Contact: John Dziewa Email: president@spinalcordwi.org Website: www.spinalcordwi.org The 24th Annual Wheels & Heels Rush on Festa 5k Run & Walk was a hit. The annual fundraiser brought over 200 racers to Milwaukee’s scenic lakefront on July 21.

Family Matters a new blueprint Jennifer Bridgman

hris lay motionless on the dusty motocross track. An ambulance wailed in the distance. Twenty minutes later, in a room filled with medical personnel, he said the words I never expected to hear: “Babe, I’m so scared ... I can’t feel my legs.” It was Feb. 20, 2010, and I was eight months pregnant with our first child. Life as my husband and I knew it had come to a screeching halt. Neurosurgeons whisked Chris off to the operating room to decompress and fuse his spine. Despite familiar faces around the waiting room, I felt like a ship lost at sea. What I didn’t know was that we had already joined a new community — a diverse group comprising 1,275,000 people in the United States living with a spinal cord injury. Our admission to the SCI community was involuntary, but the benefits of belonging to this group would become as potent as anything doctors prescribed. We learned that spinal cord injuries are like fingerprints — no two cases are identical. We longed to become part of the lucky minority who recovered from spinal cord injury, but doctors offered vague hope at best. Instead, Chris and I looked to our new community, where people shared success stories and encouragement generously. We recognized the choice before us: to wallow in the quicksand of self-pity or redesign our blueprint for the future. The arrival of our wondrous child — our “sonshine” — made our decision an easy one. We took crash courses on wheelchairs, transfers, catheters and commodes. We modified our home, our vehicle and our dreams. We resolved tricky insurance issues, researched outpatient rehabilitation programs and reviewed the latest medical studies. All while experiencing the smiles and trials of new parenthood. Chris counts his blessings before his hardships, refusing to be enslaved or defined by his paraplegia. He returned to work full-time to support our family, and he hits the gym so frequently that I’ve threatened to have his mail forwarded to 24 Hour Fitness. His sense of humor has only strengthened as neuropathic pain zaps his atrophied legs. Paralysis is no joke, but laughter is the fuel that keeps our faith burning. Chris, a T10 para, transforms his wheelchair into an amusement park ride for our squealing son. He pops wheelies and spins donuts in our living room during impromptu family dance parties. And there is nothing more attractive than my husband in his faded

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There is nothing more attractive than my husband in his faded T-shirt with the universal blueand-white handicapped symbol emblazoned across the chest: “In It for the Parking.” T-shirt with the universal blue-and-white handicapped symbol emblazoned across the chest: “In It for the Parking.” Ingenuity helps, too. One afternoon when Chris’ shoulders became fatigued, we invented the “Bridgman Party Train” — I serve as the caboose, pushing my husband down the sidewalk in his wheelchair, while he in turn pushes the stroller. Now that we are parents, date nights are few and far between, so we make them count — an outdoor music concert, a Cessna ride over the Golden Gate Bridge, a catamaran sail across Lake Tahoe. As a mother, I am reminded that life is beautiful even when it’s not easy. As the wife of a paraplegic, I have a front-row seat to the human spirit at its finest. As a writer, I am motivated to capture the views that make the climb worthwhile. With faith, humor and ingenuity in our family’s toolbox, we have constructed a new frame of mind. It may be different from our original blueprint, but its foundation remains rock-solid. Jennifer Bridgman is a freelance writer based in Mountain View, Calif. You can learn more about her writing at www.jenniferbridgman.com. Send your “Family Matters” essay (600 words by or about a family member) to editor Ian Ruder at lifeinaction@unitedspinal.org. J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

[coverstory]

Pathway to Peace

f you did a double take upon looking at this issue’s cover and found yourself wondering if you had seen that pretty face before, the answer is probably yes. Tiphany Adams is a model and actress who hasn’t let her T10 spinal cord injury get in the way of her burgeoning Hollywood career. Adams has played parts in primetime television shows and has been featured in numerous highprofile advertising campaigns. While the cover of Life in Action may not be as high-profile (yet!) as some of the other work she has done, Adams says that being featured doing something that is such a big part of her life — yoga — is particularly meaningful for her. “For me, yoga brings a sense of enlightenment,” she says. “All your desires, your mind and everything else — you just set it aside to be one with yourself. It brings me inner peace.”

Adams laughs when she thinks about how quickly and how wholeheartedly she has embraced yoga. When she moved to Los Angeles three years ago from rural Lodi, Calif., she had never tried yoga and remembers being intimidated at the prospect of rolling into a class. “Eventually, I just decided I’m not going to think like that anymore,” she says. “I’m going to go and worry about my own needs.” Now, yoga is an inseparable part of her daily exercise routine and her overall health and wellness. She practices on her own and with friends, and always finds a way to get in her stretching and poses. She has found that yoga helps relieve her stress and boosts her energy level. “It makes me feel good,” she says. “Being in the chair you want to do things that make you feel good. By feeling good, your attitude is good and life is better.”

Discovering Yoga Photo by Christopher Voelker/Voelkerstudio.com Hair and Makeup by Melanie Manson/MelanieManson.com

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

Yoga for MS Relief

ileen Pugh jokingly refers to herself as a driver’s nightmare. The cheerful Marylander drives at the posted 35 miles per hour on the single lane road that leads from her home to the yoga studio in Crofton, Md. The other drivers behind her have jobs to get to, appointments to keep, and they often show their impatience by tailgating her. But since Pugh was diagnosed with multiple sclerosis in late 2008, she has made a point of enjoying every minute of her day. That means enjoying the journey as much as the yoga lesson that awaits her at the end of it. Before her diagnosis, Pugh, 57, ran marathons, taught Weight Watchers and danced swing and salsa. She had a job she loved at the National Security Agency in a highly visible role. In August 2007, Pugh underwent back surgery for a compressed disk. A year later, she started experiencing weird symptoms. An MRI showed that she had lesions in her brain. Additional blood tests confirmed what her doctor and radiologist had suspected — an active case of multiple sclerosis. It was tough for Pugh to transition from the active lifestyle she once led. She could only walk short distances and came to rely more heavily on her walker and scooter.

By Priya Ramachandran

The change to a sedentary lifestyle led to some weight gain. Pugh discovered yoga by sheer chance. Driving past a yoga and Pilates studio one morning with her husband, she remembered reading that exercise seemed to help those with MS. She approached the studio owners later and spoke to them about her particular needs. The owners were happy to help and let her attend trial sessions for free. Pugh tried a few Pilates lessons before she realized that she wasn’t benefiting from them. The studio owners encouraged her to try Kripalu yoga, which focuses on exercise as well as building an awareness of life forces. She fell in love with the gentler pace of yoga. The only person she was competing against was herself. She could stop when she wanted and do what she could. “I loved to dance but I love yoga more,” she says. Pugh has found that yoga has helped her develop core strength. The numbness that she experiences doesn’t set in as quickly on the days that she does yoga. It also helps her with weight loss (though she has since gained back some of the weight she initially lost be-

cause of her recent steroid treatment).

The Research Results of a 2004 study by Oregon Health and Science University suggest Pugh’s experience is more than a fluke. Researchers randomly divided 69 people with MS into three groups: weekly Iyengar yoga, weekly exercise class followed by biking on a stationary bike, and a control group with no exercise program. They found that the groups assigned to either yoga or traditional exercises reported a positive improvement in energy and vitality. However there was no observed benefit in attentiveness, alertness or mood. While there have been claims that yoga affects the course of MS itself, this study only measured the effect of yoga on the symptoms experienced by the survey participants. Dr. Daniel Kantor, president of the Florida Society of Neurology, calls the OHSU study “exciting,” but also sounds a note of caution. “It is important to note that the exercises used in the study were adapted for people with MS and that not every exercise or every yoga class is suitable for every person with MS,” he says. Kantor advises people with MS to follow some form of exercise such as yoga, tai chi or other gentle movement. He finds that yoga helps people with MS by reducing stress and increasing awareness of the connections between mind, body and brain. Pugh does a different form of yoga from

Eileen Pugh finds one or two days a week of yoga is therapeutic, but more than that stresses her body.

the one studied but believes the benefits are similar. She experiences temporary flare ups in symptoms such as blurring of vision or muscle spasms if she overdoes her yoga practice. The yoga studio Pugh attends is particularly sensitive to her needs. She usually sits at the back of the class, along the wall for additional support. The studio also provides her with running fans to keep her cool and reduce heat-related vision blur, muscle spasms and numbness in the extremities. While Pugh feels energized on the days that she attends yoga lessons, she admits to sometimes being drained the following day. She has tried to add a third yoga day to her schedule but finds it too stressful for her body. Pugh’s MS is progressing. She knows that at some point she will use a wheelchair, but she is determined to enjoy her life to the fullest no matter what. In her quest for enjoyment she knows she can count on one thing: “I always feel better after yoga class.”

SCI/D and Yoga Yoga instructor Matthew Sanford, right, helps a student with the Arms Wide pose. See next page for specific instructions on three simple yet rewarding yoga poses he adapted for people with disabilities.

J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

coverstory

Seated Yoga:

Pose Instructions

he following pose instructions are provided by Mind Body Solutions, a nonprofit organization founded by Matthew Sanford, whose mission is to transform trauma, loss and disability into hope and potential by awakening the connection between mind and body. Sanford has been teaching and adapting yoga for people with disabilities since he was paralyzed 33 years ago. He wrote Waking, a memoir, in 2006, and will release his second instructional DVD, “Beyond Disability: A Yoga Practice with Matthew Sanford,” this fall. Visit www.mindbodysolutions.org for more information. ARMS OVER HEAD (FROM A SITTING OR STANDING POSITION) 1. Bring your arms to your sides, extending your arms and fingers toward the floor. 2. If you are sitting, equally distribute your weight on your sitting bones. If you are standing, equally distribute your weight on your feet. Bring your attention to your breath. 3. Press down through either your sitting bones or your feet as you bring one arm up and overhead. Hold for a few breaths and release. Repeat with your other arm. 4. Repeat, bringing both arms up at the same time.

ARMS WIDE (FROM A SITTING OR STANDING POSITION)

Illustrations by Andrea Sparacio

1. Bring your arms to your sides, extending your arms and fingers toward the floor. 2. If you are sitting, equally distribute your weight on your sitting bones. If you are standing, equally distribute your weight on your feet. Bring your attention to your breath. 3. Press down through either your sitting bones or your feet as you extend out through your fingers to bring your arms to shoulder height. Hold for a few breaths and release.

SEATED TWIST 1. Sit with your sitting bones on the front edge of a chair and your knees hip width apart. 2. Place your feet on the floor, positioning your feet under your knees and pointing your toes straight ahead. 3. Equally distribute your weight on your sitting bones. Bring your attention to your breath. 4. Broaden across your collarbones and breathe. 5. Keep your chin in line with your belly button as you bring your left hand across your right knee. 6. On an inhalation, bring awareness to your sitting bones, feet, and chest as you lengthen up through the top of your head. On an exhalation, continue to lengthen through the top of your head as you use your left hand to pull yourself around to the right. Repeat for a few breaths and release. 7. Repeat, twisting to the left. 16

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

[Member Reviews]

Yoga and Fitness DVDs Sitting Fit Anytime: Chair Yoga (2003) Santina Muha, 28, T10-11, Tom’s River, N.J. At the end of this 43 minute seated yoga program, I felt stretched and relaxed. Broken up into nine parts, many of the exercises required movement in the arms and hands, so a quadriplegic may not get much out of this program. As a paraplegic, I followed the DVD with ease, although I did have to adapt certain movements to my own ability. Balancing myself at the edge of my chair was a challenge, and I often had to sit back when instructed to sit forward. Some of the exercises during the Hips and Lower Back portion of the DVD seemed risky, and I adapted most of those to get the stretch without injuring myself. The feet portion of the DVD was pretty useless for me, while the Breathing and Meditation portions were excellent for anyone. The entire program may be too long to do each day, but it may be beneficial to do different section combinations each day. Lakshmi Voelker Chair Yoga (2007) Kate Matelan, 23, C7-T1, Philadelphia, Pa. If you’re looking for a DVD that can fit a variety of abilities, then Voelker’s Chair Yoga may do the trick. Maybe you can’t do every pose or breathing exercise, but you can find feasible sections to fit your yoga cravings. Plus, the major poses come with three options (high, medium and low) to help choose the right level to fit your capabilities. I can’t do the leg movements, but I was able to do a handful of the arm and breathing exercises. I particularly liked the option to have step-by-step instruction or to complete the regular routine without the small talk. Also, Voelker’s soothing voice helped me relax and find my center

through her meditation teachings to the sound of gentle ocean waves. Chair Aerobics for Everyone: Chair Boxing (2007) Christian Nissen, 48, C5-6, Winter Haven, Fla. I have tried seated exercise videos before, but nearly all incorporate leg movements. Being a C5-6 quad, I was happy to find that this DVD focuses nearly entirely on the upper body. I also found with a few adjustments I could do almost all movements on the video. There is an introduction to teach you the punches, a long workout and a quick workout. The workouts were interesting and challenging, good for those returning to exercise or as part of a regimen. However, the video was prone to skipping and freezing, even when tried in multiple players, which was disappointing, as I was enjoying the workout. Tai Chi Mini Sets (2010) Ian Ruder, 31, C5-6, Portland, Ore. For those of you looking to improve your posture and health and maybe find a little inner peace, Tai Chi Mini Sets may be a good option. The DVD was developed to go along with classes offered at the Santa Clara (Calif.) Valley Medical Center. Both copies I tried had problems skipping, but I was eventually able to make it through, thanks to a couple of light cleanings. Despite extensive warnings that the DVD is only intended as a supplement for class teachings, the easy-to-follow, clearly voiced instructions could serve as a solid starting point for chair users looking to give this ancient Chinese discipline a try. The pace is conducive to beginners, and the instructions do a great job of adapting the moves for most levels of SCI/D. Tai Chi Mini Sets available at no charge from paul.carufel@hhs.sccgov. org or 408.793.6431.

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coverstory

Accessible Gyms Come of Age

f you want to pump some iron while maneuvering around with ease, there is good news: As more people living with disabilities strive to maintain healthy, active lifestyles, truly accessible gyms have started cropping up in major urban areas. To get a better feel for what’s out there, we’ve delved into two new, unique workout centers that offer a lengthy list of accessible equipment and programs, and may serve as role models for future fitness facilities. These centers are so customized that they could bump Northridge, Calif., and Phoenix, Ariz., into the top tier of America’s disability-friendly cities.

A C.O.R.E Workout Southern California’s Center of Restorative Exercise offers an accessible environment focused on preventing secondary conditions of spinal cord injury and restoring health and wellness.

The Center of Restorative Exercise (C.O.R.E.) in Northridge, Calif., takes a progressive look at health, with an eye toward preventing many of the second-

[Member Reviews]

Gym Chains with Franchises Nationwide 24 Hour Fitness

Chris Bridgman, T10, Mountain View, Calif. Last year at age 32, I was in the best shape of my life, thanks to daily workouts at 24 Hour Fitness, when a tumble on my dirt bike left me hospitalized and paralyzed. When I returned to 24 Hour Fitness, the receptionist (though friendly and polite) refused to waive the $20 guest pass fee for my outpatient physical therapist. I had trouble reaching the tall check-in fingerprint scanner/ keypad stations, and 24’s notorious lack of weight etiquette (dumbbells restacked in the wrong place, plates left on the floor like roadblocks) escalated from a mere inconvenience to legitimate obstacle. My club is a “SuperSport” location — meaning newer equipment, a spacious floor plan, basketball court, wheelchair-accessible lap pool and plenty of disabled parking. Qualified trainers are on-hand, but I modified my own post-injury workout routine. I focus on higher reps with lower 18

weight, spiking my heart rate with back-to-back sets. As a manual chair user, I target my shoulders and work muscles to prevent wheelchair slouch (reverse flys, lateral raises, shoulder presses.) Secret weapons? An Airex Balance Pad to prevent pressure sores (about $55 on Amazon.com) and a buddy who enables me go beyond the stationary machines for bicep curls or bench press.

Bally Total Fitness

Amy Meisner-Threet, MS, New York In 2009 I reticently agreed to join Bally Total Fitness after much encouragement from a friend who was a trainer. Bally’s does offer personal trainers, but for a person on a fixed income, hiring one really isn’t costefficient. You can have a free intro session, and then it is helpful to find an able-bodied buddy, who is comfortable with the equipment, to work with. There are no specific machines to accommodate anyone with a disability. I have spoken to the manager about adapting the classes the gym

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offers (yoga, Pilates, etc.) to my abilities and my need for a space with the wheelchair. I have taken advantage of a variety of classes and programming to help with my MS over the years. I gear my workouts around three basic goals a previous trainer taught me: • Focus on body composition. Aim to lose fat and build muscle. • Work toward lifting moderate weight with more repetitions. • Focus on improving your quality of life. I prefer to alternate arms, legs, and upper body in the same workout, as it takes both mental and physical energy to just get to the gym, particularly in the heat. People with MS need to be aware of overdoing it in the heat, and to always do a brief warm-up at home or in the gym before using the machines. You can warm up with 2.5-pound free weights and Thera-bands for arms and legs. Always carry water!

By Kate Matelan ary complications that can come with spinal cord injuries. Co-founded earlier this year by mother and son duo, Laquita Conway and Aaron Baker, C.O.R.E. focuses on providing accessible, restorative exercise. Taylor-Kevin Isaacs, a certified personal trainer and strength and conditioning specialist, is the other co-founder and partner. After Baker was paralyzed in a motocross racing accident in May 1999, he and his mother worked together to maximize his physical potential and overall recovery through Isaacs’ kinesiology and therapy. “Building upon the flicker of a toe, to the contraction of multiple muscles, Aaron’s recovery continues to evolve to this day,” Conway says. The benefits of consistent restorative exercise have given Baker, a C4-6 quad, the means to achieve numerous awards in cycling marathons and other events. “I’ve made my health and recovery the No. 1 priority in my life,” Baker says. C.O.R.E. uses Baker’s experience to bring the power of a structured program to hundreds — and potentially thousands — of other Los Angeles-area wheelchair users. The high-tech facility operates on the premise that secondary complications and degenerative changes may be prevented or significantly reduced if exercise becomes part of a daily routine. At C.O.R.E. you’ll find specialized adaptive Amy Meisner-Threet equipment by works out at Bally’s. Cybex Total Access, NuStep and HydroGym, thoughtfully arranged for easy access. Some of the Cybex Total Access equipment has swing-away seats, so you can roll your chair right up to the machine and choose the height of the handles and weight that works for you. The NuStep equipment, meanwhile, has adaptive accessories that stabilize your legs, help you grip the machine and keep

“joining the c.o.r.e. gym is the single healthiest thing i have done for my body since being paralyzed so many years ago.” your feet secure. Need to lift some free weights? C.O.R.E. has you covered with adaptive gloves to help grip the weights and properly flex. Striking red, black and chrome accents and a bold design give C.O.R.E. the edge and visual sophistication to get you moving, and the staff strives to create a close and supportive environment. Each restorative exercise specialist takes a 20-week training course and final comprehensive exam so he or she can provide the best advice in achieving individual fitness goals. As Chris Voelker, C6-7 and a C.O.R.E. member, says, “The staff is really helpful and makes each visit full of encouragement. You don’t feel like a number at a giant fitness gym. Joining the C.O.R.E. gym is the single healthiest thing I have done for my body since being paralyzed so many years ago.” Keep your eye on C.O.R.E. in the future. “We are setting C.O.R.E. centers up as a franchise, with the goal of becoming an empowering, enduring presence statewide, nationwide and ultimately globally,” says Conway.

An Accessible Oasis Once the Virginia G. Piper Sports & Fitness Center is officially unveiled (scheduled for October), it will be the first all-inclusive, universally designed fitness center of its magnitude in the western United States. Taking a different approach than C.O.R.E., this facility will provide many workout options — swimming, cycling, lifting, organized sports and more — to help people of all abilities get active. Imagine 45,000 square feet of pure exercise paradise! Located in Phoenix, Ariz., and a program of the Arizona Bridge to Independent Living, the facility encourages wellness, physical fitness and nutritional health. “Our goal is to help you reach

your goal, by creating an accessible fitness environment where people of various abilities can independently participate in the sport, fitness and recreation program of their choice. Whether you are a competitive athlete or a mother trying to stay fit to keep up with your kids, we have something for everyone,” says Phil Pangrazio, CEO of ABIL. With more than 465,000 people with disabilities living in the county, the need for an accessible sports center was obvious, according to Pangrazio. ABIL leadership recognized the physical and mental benefits of exercise and wanted to make more options available, particularly to help address serious health issues such as weight gain and diabetes among sedentary people with disabilities. Understanding the difficulty, inconvenience and expense of accessing the appropriate, accessible fitness services further fueled this project’s development. So what’s in store? To start, accessible sports courts, an indoor track, a wide array of fitness equipment, lap and therapy pools with hydraulic elevators, adaptive handcycles and a trained staff to help keep everyone safe. The desire to create an entirely accessible experience also led to the design of

An artist’s rendering of the Virginia G. Piper Sports & Fitness Center shows a grand vision for the 45,000-square-foot Phoenix facility, which is scheduled to open in October.

accessible locker rooms, showers and dressing areas for people with physical and sensory disabilities. The best part? Every bathroom and shower stall will be accessible, so you don’t have to wait for the one or two stalls in the typical public restroom. As for future offerings, the facility is planning on starting nutrition and wellness programs, as well as hosting a handful of competitive sporting events, such as wheelchair basketball and rugby. You can get suited up or be

a spectator, but either way, the center will try to involve as many people with disabilities as possible in the action. With these workout facilities paving the way for centers across the nation, more accessible workout spots should be appearing soon. Keep in mind you can investigate some of the universally designed equipment described above and perhaps even suggest it to your local gym, YMCA or community center. Now that’s another way to flex your muscles!

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coverstory

Rediscovering a Passion fo In addition to providing support groups and resources for people with SCI/D, NSCIA’s chapters are continually organizing unique events to promote health and wellness. Here’s a look at what three chapters are doing to open up new possibilities for chair users in their communities.

Sergio Acevedo takes the plunge.

Greater New York Chapter:

Hosting Urban Outings, Wilderness Challenges Sitting in his Vermont hotel room with the heater on full blast and every available blanket wrapped around his chair, Sergio Acevedo could only think one thing: Being so cold had never felt so good. Acevedo, a C3 quad from Queens, N.Y., had just spent the day skiing with the Greater New York Chapter of the NSCIA as part of Mt. Sinai Spinal Cord Center’s Life Challenge Program. Acevedo had been a snowboarder and an extreme sports enthusiast prior to being paralyzed in a biking accident. “I never thought that I would be on a mountain again,” he says. “It was awesome.” Acevedo has gone skiing, skydiving and glider riding with the Life Challenge Program. He says the program has helped him rediscover himself and the passions he had prior to his accident. “It was good to get out of my chair and get my adrenaline running again,” he says. “To get that rush, I was very excited to know that there are still things out there that give me that peak.” That’s exactly what the program is for, according to chapter founder and current board member Jim Cesario. “A lot of our members were injured in an urban environment, and they may have seen some of these activities on TV, but they’ve never even thought about doing them,” he says. “Some of these activities open up a whole new world for them.” 20

Working with Mt. Sinai Spinal Cord Center, the chapter aims to provide the experiences and support that shorter rehab stays have all too often neglected. “Years ago there used to be a lot of recreation when people were first injured, but the stays are so short now for these guys ... This is where we see our opportunity,” he says. “[We help] transition them into the community, feeling safe and secure.” In line with those goals, the chapter also offers an urban outings program that shows newly injured New Yorkers tools for surviving in one of the nation’s trickiest cities. From outings to bowl or eat dinner, to afternoons learning the subway and bus systems, the program covers it all. Cesario’s enthusiasm and experience make it all work, according to Acevedo. “He really motivates you to do anything,” he says, “and to be an advocate for yourself.”

One of the highlights of the annual ski trip is the Friday night karaoke. Cesario makes sure all the first-time trip participants get up to sing karaoke at the Holiday Inn where the group stays. And Cesario puts himself out there along with the newbies — once collaborating with Acevedo on a wicked rendition of a Bob Marley tune. “We push a little bit here and there because it’s important,” Cesario says.

SCI Association of Illinois:

Creating an Inclusive Marathon The Chicago Marathon had always been a fundraising boon for the Illinois chapter of NSCIA, but around 2003 Kim Eberhart Muir and others noticed that something was fundamentally wrong with the marathon. The marathon wasn’t attracting enough racers in chairs. “Racers didn’t want to come here, and there wasn’t much of a field,” she says. “It was like, why are they not coming here?” That question set the chapter on a mission to find answers. What they found was pretty simple, according to

Mercedes Rauen, the chapter’s executive director. “The marathon was really not very hospitable to people who were in wheelchairs,” she says. A difficult pre-race commute that forced racers to push their chairs through massive crowds and a lack of post-race amenities similar to those enjoyed by able-bodied racers were just two of the physical obstacles. Additionally, chapter members noted poorquality media coverage of chair racers and the proportionally small prize money for the wheelchair winner. With the problems identified, the chapter reached out to the marathon director, marathon organizers and other community members, and got to work finding solutions. “From our standpoint, just to get [more racers] here and to give them a great experience was really the big goal,” Eberhart Muir says. To solve the pre-race commute problem, the chapter rounded up volunteers to personally escort the racers from the official race hotel to the starting line. They secured accessible restrooms and new tents for chair racers that were closer to the starting and finish lines. The tents offered massages

The Illinois chapter improved the Chicago Marathon so much that it now draws more than 30 competitors who use wheelchairs.

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or Play By Ian Ruder and some of the other race-related amenities chair users had been missing out on. The chapter also provided the media with better information on the wheelchair racers and taught them how to cover the event better. Finally, the chapter got the race organizers to increase the prize money for the wheelchair winner. The results speak for themselves. “We went from five, to eight, to 20 [racers in chairs], and now we’re up to 30 to 35,” Eberhart Muir says. “Not just elites, not just the people they’re calling in to compete and comping their hotel — we’re talking people from Southern Illinois, local people who now see this as a friendly place because we’ve made these changes.” In addition to improving the conditions for racers, Eberhart Muir says the changes have helped raise the community’s awareness and appreciation of the wheelchair competitors. “Before people wouldn’t move out of the way when they saw [chair racers] coming, or they just didn’t think that they were really racing in those chairs,” she says. “Now people just cheer them on as they go down Michigan Avenue in their chairs and they’re wishing them good luck.”

North Carolina SCI Association:

Meeting the Need to Compete When the North Carolina chapter of NSCIA (NCSCIA) organized its first quad rugby clinic in 2006, Debbie Myers and Debbie Johnson, the board chair and the secretary, were optimistic about getting a good turnout. The documentary Murderball had just stirred up a lot of interest in the sport, and through the NCSCIA both women had sensed demand for a local team. Still, they were blown away when more than 20 people showed up looking to play. “There was just a huge demand there for some kind of a team sport outlet,” Johnson recalls. “People were hungry for something that was a good

Mark Herndon (with ball) and Ryland Page (in black) of the Raleigh Sidewinders take on the East Coast Cripplers of Virginia Beach.

combination of social interaction, competition and fitness, and I think that quad rugby met all those needs.” Five years later, the team sponsored by the chapter, the Raleigh Sidewinders, is about to embark on its sixth season, and quad rugby is flourishing in North Carolina. Even more importantly, the sport is helping improve the lives of many North Carolinians with spinal cord injuries. “The neat thing about the sport is you forget you have a disability,” says Myers, the team’s manager. “There are some guys who are just kind of lost and not really sure where they want to go — depressed and not feeling good about themselves. This sport brings out the competition and helps them feel good about themselves again.” For Justin Richardson, quad rugby filled a void created after becoming a C6-7 quad in a diving accident. Richardson had been an avid swimmer and soccer player prior to his injury and was struggling to find a physical pursuit he enjoyed after his injury. “It was a whole new ballgame,” he says. “It was nice to be able to get back out and be part of a team sport again. Beforehand, there wasn’t really much to do. If I wanted to be active, I had to go out and push my wheelchair by myself somewhere.”

Richardson says he noticed immediate improvements in endurance and strength, but said the biggest improvement may have been his mental well-being. “Not only about physical fitness, but the knowledge that you pick up from being around other people in your situation and learning from their experiences — learning tips and tricks that you’ve never seen before and never learned in rehab,” he says. Richardson is hoping to spread the knowledge he gained during his five seasons with the Sidewinders by starting a new team this fall in eastern North Carolina. “As much as quad rugby has brought to my life, I’m really looking forward to creating those opportunities for people in the eastern part of the state,” he said. Myers summed up the health and wellness benefits of the sport with the story of a phone call she received from the parent of a team member. “He said, ‘Deborah, I’ve got to thank you, I was worried about my son. I thought we were going to lose him, and I was real worried that he was going to do something to hurt himself,’” she recalls. “He said you changed his life with quad rugby. I can’t thank you enough.” See chapter contact information on pages 9-12. Chapters, share your events with us at lifeinaction@unitedspinal.org.

“there are some guys who are just kind of lost and not really sure where they want to go

— depressed

and not feeling good about themselves. this sport brings out the competition and helps them feel good about themselves again.”

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[solutions]

Ask Anything Q. I am a 35-year-old computer engineer (and C5 quad) and have been hiring my own personal care assistants for 12 years. It is starting to wear on me — the turnover, the training, the vigilance required so much of the time. I always wanted to live on my own and have worked hard to be able to afford my own place, yet I am starting to think about a live-in attendant. But I worry about losing my privacy and keeping distinct boundaries. What are some other things I should consider? Can this setup really work, or does it just magnify the typical PCA headaches? Any advice would be appreciated. A. Whether or not to hire a live-in assistant is one of those questions that you can debate forever. For every benefit, you can come up with a drawback. Easier scheduling, more ability to be spontaneous and the potential for companionship can be countered by reduced privacy, the need to be managing continually and the loss of personal space. The key to making a live-in situation work is establishing rules and boundaries that maximize the benefits and minimize the drawbacks. Many of the issues with live-in assistants revolve around space and trust. The best way to alleviate these issues is by finding the right person: Someone whose personality meshes with yours and is trustworthy, responsible and capable. That’s asking a lot, and easier to describe than to find. When you’re interviewing candidates, keep in mind your concerns and how each candidate’s different strengths and weaknesses will affect them. An older attendant may not offer the same compan-

Ask Us Anything! Life in Action draws on the expertise found at Spinal Cord Central and other United Spinal programs to answer your questions and provide resources for further information. Send questions to lifeinaction@unitedspinal.org.

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Spinal Cord Central ionship, but may offer more privacy and dedication. Someone with no caregiving background may need more management, but an upside may be that you can train them for your specific tasks. You’ll have to weigh your desires against your needs. Once you have found the right person, it’s important to make sure they understand everything you expect from them. There are so many details — from the basics of your caregiving, to how you want to share your space, to how you will handle time off and pay — that you likely won’t be able to think of them all in one sitting. Regardless, do your best to get all of your expectations and needs on paper in some sort of contract you can discuss with your candidate. Make sure they understand that this setup is new to you, too, and there will likely be changes. One of the toughest parts of any PCA relationship is drawing the line between employee and friend. If you struggle with this aspect with part-time help, be prepared for a more difficult battle should you hire a live-in. To help minimize the battle, set up boundaries that work for both of you. There aren’t any “right” answers, there’s only what works for you. As the employer, you should be in the driver’s seat about if and when your assistant can have friends over, how you two share meals and when he/she is on call — but it’s important to remember that your attendant has a life, too. If they’re miserable, odds are their cloud will rain on you. Be patient, be flexible and be prepared for a bumpy road in the beginning, as you adjust and learn about each other. Unless you’re incredibly lucky, things won’t go exactly the way you planned. Concessions will be made. Frustration is, sadly, probably an inevitability. But, with the right person, the right set-up and the right approach, a live-in can improve your quality of life and help you get rid of some of the headaches that come with managing a stable of part-time PCAs.

Resources • Care Cure forum on caregiving: http://sci. rutgers.edu/forum/forumdisplay.php?f=21 • Caregivers and Personal Assistants: How to Find, Hire and Manage the People Who Help You (Or Your Loved One!) by Alfred DeGraff, available at amazon.com.

When Geeta and Pratik Chhetri were injured in a bus accident in May, the Nepalese woman and her son did not know where to turn. Geeta, who survived with a C5-6 spinal cord injury, was in the United States for Pratik’s graduation from college, yet suddenly she was thrown into the chaos of SCI in a foreign country. To help orient the Chhetris to SCI, rehab options and fundraising ideas, their Virginia case worker requested materials from Spinal Cord Central, the information and Geeta and referral service of NSCIA. Informa- Pratik preinjury tion specialists provided a new injury packet, online knowledge books and leads to financial aid and rehab hospitals that sometimes provide “scholarships” for people with limited resources. Some leads panned out, and some didn’t, but ultimately Geeta was accepted into rehab at the University of North Carolina at Chapel Hill on a pro bono basis. Meanwhile, friends set up an online fundraising site through Google (http://sites.google. com/site/pratikfund) to pay for things like Geeta’s immigration lawyer and her daughter’s travel from Nepal. The hard work of rehab continues, but on August 12 the family reported that Geeta had wiggled a toe and was gaining upper body strength. Her daughter, Pragati, a nurse in Nepal, has joined Geeta in North Carolina and is learning transferring techniques and other skills in anticipation of Geeta’s release from rehab. Situations like Geeta’s are the kind that Spinal Cord Central helps address every day. The SCC team, which includes a registered nurse, a licensed social worker and three information specialists living with SCI, attends to email and phone inquiries. The group also works daily on keeping resources current (and this column will highlight new and popular resources in upcoming issues). “People can use Spinal Cord Central knowledge books as the first stop for SCI/D information,” says SCC manager Bill Fertig. “These are the most up-to-date and complete listings of SCI/D resources compiled and maintained by SCC staff.” If you still have questions, he recommends clicking “Ask Us” at spinalcordcentral.org. Or call SCC at 800.962.9629 from 8:30 a.m. to 5:00 p.m. EST, Monday through Friday except federal holidays. “We are here to help,” Fertig says.

Threads: Denim Dilemma inding that perfect pair of jeans is almost as difficult as taking on the Iron Man competition. Or finding a swimsuit. It takes a grueling amount of effort and oftentimes ends in settling for a pair that still doesn’t fit the bill. Believe me, I’ve been there. However, I turned jean shopping into a science and studied it no end in hopes of solving the denim dilemma. So why take my advice? Because I have mastered the art of fashion on wheels — sitting, pushing and transferring all factor into my style-savvy choices. Jeans have always been a staple of my wardrobe, ever since I rocked acid washed jeans as a munchkin. I’m now your dark skinny jean gal with an overflowing closet and a desire to inject mainstream fashion into the world of those living with SCI/D. So let’s break down our denim criteria:

Style By far the most crucial component in finding the perfect pair. Stick to straight leg, boot cut or skinny jean styles, since they taper well and can be versatile enough to complement every outfit. If your legs aren’t super toned, these denim styles typically keep extra fabric to a minimum and complement your shape. If you’re sporting a leg bag, you should gravitate to the boot-cut style since you’ll have some extra room to accommodate. Watch out for jeans marked “super low rise” since that can lead to some major butt cleavage while sitting. A definite denim faux pas. To avoid this blunder, have an approximate measurement for how high the back seam of the jeans needs to be to cover your derrière.

Size I know numbers can play mind games, but being realistic in your jean size will help make the right selection. Choose a pair in your typical size and then pick the size above and below your original prediction. Every manufacturer and style might change the lucky number you need, so be sure to hold them against each other and compare the room you gain or lose in the size ranges. Just remember: going too small can put undue pressure on your body and make for more trouble. And feel free to rip out the tag if that’s the deal breaker — just be sure it’s after you purchase the pants!

By Kate Matelan

Length

Fabric

I can pick out someone’s pants riding up from a mile away. If you’re in a chair or sitting for most of your day, a key element in length is making sure the hem of your jean hits your ankle. Many companies offer jeans in long and short options, so be sure to ask when browsing. FYI: sometimes these different lengths can be found online only. Be sure to ask about in-store return policy if you do purchase this way.

The glory of stretch jean fabrics and jeggings (a jeans and leggings hybrid) has been a big step in the fabric department. Ditch the ’80s stirrup stretch pants and welcome the jegging, within reason, into your wardrobe. Just steer clear of anything too rigid since that won’t provide any “give” to your extremities.

Color I am obsessed with white jeans, but I know that buying a pair is fruitless. Within two minutes of wheeling around, those crisp pants will be dirty from the city streets. Darker jeans won’t show the wear and tear of a mobile day and have a sleeker look anyway. They can be casual, but also dressed up for an evening out with friends. So go ahead, pick any jean wash type, but be mindful of what your schedule is for the day — think off-roading or relaxing at the local coffee shop.

Kate’s Top 5 Denim Tips: • Be on the lookout for jean accessories. Sometimes there are extra rivets and pockets that might rub you the wrong way — literally. Steer clear of anything too cumbersome. • Beware of darted side pockets. When you sit, they flare out and make for awkward fabric bunching up at the hips. • Bring a few pairs home. Dressing rooms are a drag, so try on the pairs at home and see which one suits you best. Throw on a typical pair of shoes with each jean you try. • Be open to small changes. Always leave the option open for taking your pair to the tailor and having him/ her nix the button and/or zipper for some Velcro. • Buy a button hook. If buttons are a pain and you don’t want Velcro, give this type of adaptive device a try. Or if you’re like me and like to keep the extras to a minimum, put your jeans on already buttoned!

Katie Mathews, C6-7, is a tanktop and jeans kind of girl. “I thought I’d never wear jeans again,” she says about the months following her accident. “The first time I put them on by myself, it took an hour and a half. Now I’ve got it down to 10 minutes.” LIFE IN ACTION

solutions

Access: Man Caves

By Ian Ruder

Stanchina boldly went where no man in a shower chair had gone before, using the chair in combination with a vertical lift to install his overhead storage.

A cluttered workbench is the sine qua non of any garage. The beauty of Stanchina’s workbench is that everything is accessible.

Stanchina’s Mars-Venus theory on garages: “Women see the space as an extension of the outdoors, while men see the space as an extension of the home.” 24

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s soon as C. John Stanchina got married and moved into his wife’s house, his longing began. It wasn’t the bachelor lifestyle he missed, or even the bachelor pad, as much as having one room that was all his own. One room where he could do whatever he wanted, whenever he wanted: a man cave. Stanchina’s vision was to convert the spacious garage of his new Minnesota home into an optimized work zone where he could tinker and refine projects for his company. Most popular media portrayals of man caves have focused on the hypermasculinity of such spaces, but as a paraplegic, Stanchina’s focus was on accessibility. “There was a pressing need for a business that I’m trying to get off the ground to have storage space for inventory and accessible work space to be able to finish goods,” he says. “Garages are kind of cave-like as it is, and I saw it as a retreat that I could use on my own.” For those who are unfamiliar with the man cave movement, the Oxford English Dictionary defines a man cave as “a room or other part of a home regarded as a refuge for the man or men of a household.” That the OED even decided to add the term speaks to the concept’s rapid ascent to mainstream culture. One of the television shows that have popularized the term is ABC’s “Extreme Makeover: Home Edition.” Show designer Paul DiMeo has overseen the construction of numerous elaborate, accessible man caves. While the expensive projects on “Extreme Makeover” are likely out of reach for most people, DiMeo has numerous tips for those interested in designing their own accessible man caves (see sidebar). First and foremost is having the right mindset. “I try not to think in terms of disabilities but in terms of abilities,” he says. “I want to give people the freedom to do what they want to do. To do that, we look at the space specifically to each person’s needs.” Stanchina started by figuring out what would take up the most space and how to optimally place those things to maximize the remaining space. One of the biggest obstacles was how to ramp the 17-inch rise to the door into his house. The ADA calls for a 1-12 rise-to-run ratio for ramps. That means for 17 inches of height you

To install the storage units, he rented a vertical lift, threw his shower chair on it, transferred, elevated and got to work.

C. John Stanchina

Tips from C. John and Paul never waste space: Hardware devices, poles and lifts are a few of the devices that can provide access to spaces that seemed inaccessible. Take advantage of areas above and below what you’d normally be able to reach. think outside the box: Be bold and don’t be afraid to build things in new ways if you think it will provide you more access. embrace technology: No matter your ability, new apps and programs can make controlling your environment easier. Try Crestron’s Mobile Pro G app (iPad) for an easy way to control lights, TVs and much more. use footprint planning: If you use a chair, measure its turning radius and plan all your areas around the space needed to turn around. plan, plan, plan: This tip is the same for people with disabilities and without. The more time you spend on figuring out the details, the less time you’ll spend ripping out mistakes and swearing at yourself.

need 17 feet of ramp, or 204 inches. To get the needed distance without compromising workspace, Stanchina wrapped a wood frame around the back of his garage and down one side, sacrificing the garage’s two-car capability but leaving plenty of space for his chair. Total cost: Under $300. Next on his list was constructing a workbench suited for him in his chair. “Tuck-under workspace is key for me so I’m not sitting sidesaddle all the time when I’m trying to get my work done,” he says. To achieve that space, he built a work bench against the opposite wall supported by four triangular braces, built out of two-by-fours. He anchored them to the studs with four-inch screws while also partially setting them on the concrete foundation. He says the triangular braces were simple for him to assemble himself and made wheelchair access easy. Total cost: Under $150. Stanchina’s last big obstacle, and one common to most chair users, was accessible storage. He decided to take advantage of his garage’s spacious ceiling by installing six Racor Pro PHL-1R Heavy Lifts ($127.99 each at Amazon. com) on the ceiling. To install them, he rented a vertical lift, threw his shower chair on it, transferred over, elevated and got to work. “It was nice to be able to use off-the-shelf technology built for the masses that you can co-opt for people with disabilities as well,” he says. With those three major areas covered, Stanchina got to filling his man cave with all the prerequisites, including his tools, a wireless stereo, a dartboard and propane heaters. With the exception of the ramp, which his dad designed, Stanchina designed and built everything in his dream cave. He encourages other chair users — whether male or female — to build their accessible dream caves. His top tips? Plan before you start, than plan some more, and for good luck, plan a little more. “Without careful planning, you’ll probably end up undoing some of your own work,” he says. “Take your time.” Most importantly, embrace your creative side. “There is a certain reward for people with disabilities in coming up with solutions for themselves,” he says. “They might get inspired by something they see that I’ve done, but the reward that exists in making it on their own and doing it for themselves is not to be overlooked or dismissed.”

Ocala, FL - September 30 - Oct. 1, 2011 Tallahassee, FL - April 12 - 14, 2012

There Are No Barriers Too Great to Overcome! r Life”

o isure f e L e v “Acti

www.fdoa.org

(850) 201-2944

To learn more about Stanchina’s work, check out his website at www.bluezoneenterprises.com. J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

solutions

Dating/Relating: ‘Am I Sexy?’ Editor’s note: Our dating column is delivered by two single wheelchair users living on two very different coasts. Though they live 3,000 miles apart, they’re on the same wavelength in knowing what it’s like mixing and mingling while living with SCI. They have chosen not to reveal their identities here, but their experience is real, and they are ready to lend their dating/relating advice. Have a question or topic suggestion? Email us at lifeinaction@unitedspinal.org.

et’s face it, sexy is a feeling. You can’t buy, borrow or steal it, but you certainly can feel it. And yes, I do feel sexy. Call me Ms. Amour — I’m your female insight into the world of dating and relating from someone living it on wheels. Feeling sexy is a huge factor in the dating world, but that doesn’t mean you have to dress in lingerie or embark on some risqué rendezvous in a sleek sports car. Sexy is how you carry yourself, how you leave a little mystery. Sexy is something you exude because you’re confident in yourself. Plain and simple. I’m no Victoria’s Secret or magazine cover model, but really, who is? Perfection on a magazine cover comes with perfect lighting and retouching — it is unrealistic. Yet, there is no need for glossy cover comparisons when I’m already comfortable loving my body. Every inch, every scar, every curve — it’s all me at the end of the day, take it or leave it. Being real and feeling real are what really makes someone sexy. And my wheelchair is a bit of unconventional sexiness. It turns heads, and I like that. When I roll in dressed to impress on some slick titanium, it might just raise a few eyebrows. I truly believe that sexiness can be ignited from that unknown experience. Ditching the cookie cutter persona is way more interesting and can easily get the conversation flowing. But don’t get me wrong, I know there’s a femme fatale stereotype embedded in society. I’m expected to have that voluptuous body and seductress voice. Talking about how I self-cath and need to elevate my feet at night doesn’t exactly scream “hot stuff!” Last I checked, suppositories didn’t top that list either. But all that is a part of who I am — I’m living my sexy life with my medical needs included. That’s why sexiness is a

Axel Grande

Zoë Amour

balance of being confident in who ociety says that supermodels and bodybuilders are the ideal you are and learning to laugh off the sexyfolk and any deviation daily care routine that might not turn from their perfect bodies up the heat. should be corrected. And if you can’t Humor. Intellect. Compassion. correct it — say, if you are paralyzed Don’t discount the traits that do not — then tough luck, you typically pop into your just can’t fit the sexymold. mind when you think We know you want to of sexy. I find someone meet other sexyfolk and who can retell a himake lots of sexytimes, exy is how larious story just as sexy but it just ain’t gonna hap— if not more — than pen. But I beg to differ. I you carry someone with a ripped am sexy, as are plenty of yourself how physique. Outward other folks with disabilisexiness can fade — it’s ties. We are confident, fun you leave that inner sexiness that and — wheelchair-bea little damned — good-looking. keeps on burning … in a mystery Even the dictionary good way. agrees. Sexy has three I know the world of definitions: First, it means dating and relating can “sexually attractive or exsometimes be a guessciting,” like “Heidi Klum ing game, but if there’s is a sexy supermodel.” It can also one thing I know for sure, it’s that mean “sexually aroused,” as in “I’m sexiness is at the core of it all. The in a sexy mood tonight.” And lastly, it perfect blend of self-assurance and can mean “exciting” or “appealing,” conviction reels in your catch, and like “that Porsche is downright sexy.” then a powerful personality gives So am I attractive? Darn right I your sexiness that added oomph. am. Just because I’m a quad who rolls Don’t be afraid to channel your inner around tilted back a dozen degrees, Brigitte Bardot every now and again, doesn’t mean I can’t work to make but be sure you feel sexy in your myself look good, and a couple extra minutes a day shaving close and pickskin, even if you’re just being that ing nice clothes always pays off. People casual, real you.

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“S

.”

with disabilities have just as much ability as anyone else to make ourselves look good, and some of the sharpest and sexiest people I know are folks in chairs. So don’t be afraid to do yourself up a little bit. People will notice. Am I aroused? Quite often! As some of my friends have said, “just because I can’t feel it, doesn’t mean it doesn’t still have a mind of its own.” Seriously though, folks with disabilities think about sex as much as the next person and we have as much a right to intimacy as anyone else. Plus, the brain is the largest sexual organ (and the most complex, despite what most men think) and no simple injury is going to stop it from being aroused. Better yet, that arousal spans everyone, so my partner can feel plenty hot about me, SCI and all. As for turning others on, always remember that while sexual energy is invisible, people notice it. So showing that you’re aroused can bump up the sexual gravity a couple notches. Am I exciting and appealing? A fun personality, active life, and weekly quad rugby games say yes. Plus, which person with a disability hasn’t been through things that would blow most folks away? And going beyond stories and experiences, traits that are incredibly sexy in all people are depth, breadth, and passion. The most appealing people I know go out, keep conversations interesting and do things that warrant ridiculous stories over dinner or drinks. In short, it’s more than possible to be exciting and appealing just by keeping life interesting. Us folks with disabilities might even have a leg up on that front. So yes, I am sexy. And so are you. I’m sure if you look at those definitions above, you’ll find that you fit the bill. Even more, make sure that you feel it, that you can say with certainty, “I am sexy.” Because you can’t be sexy if you don’t believe you are. Once you realize that, you’ll be well on your way to getting something going in the world of dating and relationships.

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THE NATIONAL SPINAL CORD INJURY ASSOCIATION Van Brooks C5 RT300 Rider

The National Spinal Cord Injury Association (NSCIA) is a non-profit membership organization for people with spinal cord injuries, diseases and dysfunction, their families, their related service providers, policy makers, organizations, hospitals and others interested in the issues affecting the spinal cord injury community. Our mission is to enable people with spinal cord injuries, diseases and dysfunction to achieve their highest level of independence, health and personal fulfillment by providing resources, services and peer support.

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Join Us at NSCIA’s 3rd Annual Spinal Cord The Hall world's leading Injury (SCI) of Fame Gala FES cycle now stimulates trunk muscles too.

This year’s categories include Assistive SCIA will celebrate 14 new inductees Technology, Benefactor, Corporate Execuand an emerging leader at the 3rd an- tive, Disability Activist, Disability Educator, Only the Hall RT300 can nual Spinal Cord Injury (SCI) of Entertainment, Entrepreneur, Government Fame gala and induction ceremony on the Executive, Grassroots Organizer, Legislative, stimulate abdominal evening of Tuesday, Nov. 6, at the John F. Media, Research in Basic Science, Research Kennedy Center for the Performing in in Quality of Life, and Sports. In addition, and backArts muscles Washington, D.C. in recognition of the ac- NSCIA will award an “Emerging Leader,” a whilewith you complishments of people SCIFES and leg special award which was introduced last year those committed to their quality of life. or arm cycle. in conjunction with the 2006 SCI Hall of Once again, NSCIA will be host to a Fame. performance on the Millennium Stage, folWork efficiently. The process began in August when lowed by the 2007 induction ceremony and NSCIA called for nominations. Far exceedWithout transferring. a dessert reception in the Roof Terrace Restaurant. Nashville based singer/song- ing last year’s nominations by almost 50 Internet based. writer JP Williams will perform on the Mil- stellar nominees, NSCIA has received more lennium Stage, This and award-winning is the only than 165 qualified nominees! These nomijournalist, Leon Harris will emcee the event. nees were voted on by NSCIA members cycle also and reviewed by a selection committee to Hosted last year FES by inaugural SCI Hall ratify the voting. One nominee from each of Fame member and former Dateline suitable for kids NBC correspondent John Hockenberry, category will be inducted and celebrated at gala. this black tie optional is atas celebration young as four.the Formed by NSCIA in 2005, the SCI tended by business professionals, government officials from a variety of departments Hall of Fame was created to celebrate and including the U.S. Departments of Health honor individuals and organizations that and Human Services, Labor, Justice, Edu- have made significant contributions to qualcation, Housing and Urban Development ity of life and advancements toward a better and the Social Security and Veterans Ad- future for all individuals with spinal cord inRx only ministrations, healthcare providers, media jury and disease. To find out more about the SCI Hall of representatives, researchers, individuals, and families – all of whom share a commitment Fame or to see a list of previous inductees or to maximizing the quality of life for people this year’s nominees, visit www. spinalcord.org. with spinal cord injury and disease.

Call us at 1- 800-609-9166, or visit restorative-therapies.com ✂

cut out & return

Who’s Who in American Law 1985 through present

Attorney Ronald R. Gilbert

Advocate forthe theSpinal Spinal Cord Injured Attorney for Injured Put nation's top personal injury specialist to workbeen for you.injured Ron Gilbert has(1) helped if the you, a friend or loved one, has by: A over 200 spinal cord injured persons in 35 states collect the compensation they deserve. product or use of a product (e.g. helmet, vehicle even if it is a If you suffered a spinal cord injury, maybe he can help you.

one vehicle accident and you are the driver, ladder, trampoline

more), (2) from On successful someone property (e.g. falls, gunshot, Compensation andelse’s responsible litigation can open doors to a betrecreation events more), (3) a medical ter life. With the or highathletic cost of disability related expenses, youDuring need to know all your opprocedure as a result of a prescription drug — YOU MAY BE tions. It takes anor experienced, committed, caring specialist to make the system work for ENTITLED TO ECONOMIC RECOVERY. you. Put the nation’s top personal injury specialist to work for you. Ron Gilbert has helped over 300 spinal cord injured in 35 legislation states collect thespinal compensation they deserve. If ° persons Helped sponsor benefiting cord injured persons. you have suffered a spinal cord injury, he will try to help you. Among Ron Gilbert's many prevention and advocacy efforts, he has:

Founded the Foundation for Aquatic Injury Prevention and the Foundation for Compensation from successful and responsible litigation Spinal Cord Injury Prevention, Care and Cure (www.fscip.org). can open doors to a better life.

° Some Servedof as Secretary and a member of the Board ofto Directors the spinal cord Ron Gilbert’s many efforts help of the National Spinal Cord Injury Foundation. community include: ° • Received appreciation forbenefitting Prevention work from thecord injured Helpeda certificate sponsorof legislation spinal Michigan PVA. persons.

Served Secretary and member of the Board ° • Served as aas member of the SCI/TBI Advisory Committee - Michi- of Directors of the Spinal gan and National Vice Chairman 1988 Cord - 1996.Injury Foundation. • Received a Certificate of Appreciation for Prevention work

Time may be working against you. The rule of law called the Statute from Michigan PVA. of Limitations puts a limit on the time in which you may file an injury Time may working against you. ruleseriously of law called the claim. This time be can be as short one-year. If you haveAbeen injured andof haven't talked with a lawyer, time mayin bewhich runningyou out. may file an Statute Limitations puts a time limit Don't wait. It won't cost time you a cent talk with us. And may be the If you have injury claim. This can tobe as short as itone year. most important telephone call you'll evermay make.be running out. Don’t wait. been seriously injured, time

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J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

solutions

TechGuide: All-Terrain Chairs

aking your wheelchair off-road – through dirt and mud, over rocks and stones, on the sand and in the snow – is not the disaster it used to be. In fact, nowadays there are so many all-terrain chairs that the only challenge is picking the right one. One of the big bugaboos about all-terrain chairs, according to users who’ve contributed to USA TechGuide, is the power-versus-speed conundrum — to gain the extra oomph you have to sacrifice speed, and vice versa. For instance, one of the most powerful chairs is the TracAbout IRV

TracAbout IRV 2000

2000. “It’s truly amazing in snow,” says one satisfied customer from Canada. “I’ve never gotten stuck.” But its top speed is only 3.5 mph. Manufactured by the Newton, Kansas-based Mid-Continent Industries, the TracAbout moves like a tank. Literally. Instead of rolling on wheels, it runs on treaded tracks. “It can push a four-door car in neutral from a dead stop down a gravel road,” says Aaron Wells, TracAbout’s sales manager. Asked about its “swiftness issues,” Wells says there is an option that allows it to move at a healthier 4.5 mph clip. But, he warns, “you may stall out on a steep incline because of the loss of power.” For more speed, consider the Magic Mobility Frontier series. Based in Australia, Magic Mobility offers several models to choose from. The Extreme X8, for example, boasts a top speed of 6.2 mph. It also has four-wheel drive, making it good for rugged outdoor use – sand, snow, mud and obstacles up to six-inches high. Alternatively, the new Frontier V6 has a zippier maximum 28

speed of 7.5 mph. But it can only vault over obstacles up to four inches high. Considered more of a primary-use chair, it works well outside and in. To be sure, these are heavy-duty rides. Call me cynical, but doesn’t that mean heavy-duty repairs? Representatives from both companies assured me they have enough parts in stock and authorized repair people throughout the country to almost guarantee efficient service. TracAbout users, however, complain that the tracks often stretch out over time and even slip off, leaving you stranded. Wells acknowledges the possibility but insists that it comes down to good maintenance; in other words, prevention is the best cure. He recommends checking and, if necessary, adjusting the track tension after the first week and every four weeks thereafter. Also, there are three separate track settings for different terrains. Though the TracAbout can turn on a dime, he says, doing so at the tightest setting – which is best for the worst outdoor conditions – can cause the tracks to roll off. “User error is the main reason people lose a track,” says Wells. Another consideration for prospective buyers is the availability of options and add-ons. The Frontier V6 comes in front-, middle- and rear-wheel drive models. All Magic Mobility models

offer two types of tires – narrow ones, which resemble ordinary wheelchair tires, and wide knobby-treaded ones, for traversing “areas where most chairs cannot go,” explains Melissa Fansler, a manager at Angola, Indiana-based Innovation in Motion, Magic Mobility’s U.S. sales rep. Can’t decide? You can buy both sets of tires and switch them any time. The TracAbout is built to order “so it can be as customized as you want,” according to Wells. In addition to specialized seating, it can come with a gun mount, an umbrella mount or 10 different types of camouflage. Still, some users have found that the footrests jut out too far forward from the seat, making the TracAbout difficult for transfers. Wells notes that the footrests do fold, but if you need them to swing away or require other special seating, make sure to order it that way. Some Magic Mobility customers have found that rain and snow seep into the circuitry, causing shorts. “There is a cover for the electronics that can be purchased as an upgrade,” says Fansler. Magic Mobility chairs start at a manufacturer’s suggested retail price of $16,000. TracAbout’s MSRP is a hefty $17,320, but authorized independent dealers frequently sell it for less than $15,000, says Wells. But wait! There is a cheaper option, especially for those with sufficient arm strength. It’s called the Renegade. This

By Ben Mattlin

Frontier V6

heavy-duty chair is ideal for those who like a little workout with their outdoor cruising. Invented by a para who enjoys hiking the woods of Maine, the Renegade is powered by manual levers instead of a battery. This means you can keep your hands off muddy or snow-covered wheels while “maximizing the torque you can get from that longer motion,” explains spokesman John Nunan. Because the left and right gearing systems work independently, he adds, “users with less function in one hand can alter the gearing to suit their needs.” The levers can be removed and stowed under the seat, allowing users to ride the traditional way, with the wheel rims, or to be pushed from behind. Yet many lament that, because of its structural stability, it cannot be folded or taken apart to fit into a car trunk. The manufacturer, headquartered in Portland, Maine, does make a car carrier — as well as accessories such as a drink holder, a fishing-pole mount, a gun rack, a snowplow, snow chains, skis and a trailer hitch. And how much cheaper is it? A lot. Prices start at $4,850. Check out United Spinal Association’s TechGuide at www.usatechguide. org for more user-generated reviews of wheelchairs and assistive technology.

The Renegade

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

Ben Mattlin, a freelance writer in Los Angeles, is a lifelong wheelchair user whose first book will be published next year.

2011 FL Independence Expo

Buena Vista Palace Hotel & Convention Center 1900 Buena Vista Drive, Orlando, FL Friday, September 23rd: 10am to 4pm Saturday, September 24th: 11am to 5pm

FEATuRING DAmON ROzIER NY’s Original “Sit-Down” Comedian Explore Your Abilities with our…. Show-stopping Exhibitors displaying the latest in lifestyle-enhancing products; Exciting & Informative workshops on Social Security and Disability Benefits & Resources; Fashion, Travel, Advances & Technology in SCI Research and Much More!

The InDepenDenCe expo IS A FRee evenT!

www.independenceexpo.org or 1-800-404-2898 Hosted by:

Sponsored by:

life beyond wheels

Like United Spinal Association on Facebook and hear about all our our upcoming and FREE events. Plus, follow us on Twitter to join the conversation on what’s going on in the disability community.

J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

solutions

MS Life

Members Respond

By Josie Byzek

Q. How do you access your home?

best strategies

Fighting Fatigue Eight out of 10 people with MS deal with fatigue every day. But you may be surprised to learn that it’s not always directly caused by MS. Here are a few culprits: Vitamin deficiency. It’s common for people with MS to have vitamin D and/or B12 deficiency. Your doc can rule these out with simple blood tests, and the condition is easily treated with inexpensive megadoses of the vitamins. Depression. Having MS is stressful and that’s enough to trigger depression. But there could be physical causes as well, since the myelin sheath around nerves affecting mood may be attacked as part of the disease process. And let’s not forget meds like interferons that are directly linked to depression, and sometimes suicidal thinking as well. Depression

MORE ‘MS LIFE’ COMING SOON ONLINE

Self-portrait by Patricia Lay-Dorsey

We are currently working on relaunching the NSCIA member website with a new design and new features. This fall, additions will include an MS Life page that’s updated weekly and a free MS Life e-newsletter with items such as “Pros and Cons of the Baclofen Pump.” We’re also planning to showcase the images of talented photographer Patricia Lay-Dorsey, whose self-portraits about living with MS are striking and honest.

Questions? Ideas? Contact MS Life Editor Josie Byzek at jbyzek@unitedspinal.org.

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

is treatable. Talk to your family doctor or neurologist about available meds, and maybe even ask for a referral to a therapist. Lack of sleep. Perhaps instead of feeling tired you simply are tired. For example, bladder problems commonly get people with MS up throughout the night, and these sleep disturbances can cause them to drag throughout the day. The fancy scientific name for having to pee in the middle of the night is nocturia — and treatments are available. Talk to your family doc, who may refer you to a urologist. If all the above are screened out and you still fight fatigue, then you may want to consider a medication like Provigil, which specifically treats MS fatigue. But be careful: Provigil may have serious side effects, such as — rarely — fatal skin rashes. More common are headaches and nausea.

med alternatives

Mindfulness Meditation Effective for MS Mindfulness meditation may reduce depression, fatigue and anxiety in people with MS, says a study published in the Sept. 28, 2010, issue of Neurology. In addition to alleviating MS, this technique can also be used to help people achieve personal goals. This type of meditation has been described as a way to enhance a calm awareness of the body’s functions, including consciousness itself. The study, conducted in Switzerland, consisted of 150 people with mild to moderate MS. Some were randomly chosen to take part in the mindfulness training, while the rest simply continued their regular medical treatment. Those who took the class reported an overall greater quality of life. “Fatigue, depression and anxiety are common consequences of having MS,” said study author Paul Grossman, Ph.D., of the University of Basel Hospital in Switzerland. “Unfortunately, the treatments that help slow the disease process may have little direct effect on people’s overall quality of life, fatigue or depression. So any complementary treatments that can quickly and directly improve quality of life are very welcome.” For a simple guide to mindfulness meditation, go to http://altmedicine.about.com/cs/mindbody/a/Meditation.htm. Also, UCLA has some sample meditation guides available for download at http://marc.ucla.edu/ body.cfm?id=22.

Sharon Joseph, 58, a manual wheelchair user diagnosed in 1973, has progressiverelapsing MS and lives in Topeka, Kansas: When my husband, Kevin, and I moved into our ranch-style home, we had contractors put in a wooden ramp with handrails that I used to help pull myself up the ramp. But last year we spent some inheritance money to replace that ramp with a gentler slope — it’s now a brickand-stone sidewalk without handrails. I can maneuver it alone, plus I now have a lovely butterfly garden with a flat extra space so I can enjoy the serene setting. We were lucky, although sad about how the money came to us. Currently there’s not much financial help out there for home access. I suggest asking professional business groups like Sertoma or Kiwanis. Unions and churches also sometimes will help make homes accessible as part of a community project. Elizabeth Schwab is the caregiver for her husband, Richard, 67, who has primaryprogressive MS. The Schwabs live in Susquehanna Township, Pa.: Three out of four of our house’s doors to the outside are accessible, thanks to pressure-treated wood ramps that were installed by our contractor. Also, I asked the contractor to put rails on either side of the back door ramp, the one Richard uses most often, since the car is out there. It was scary to use the ramp before we got the rails, because the wheels could go off the sides and cause a fall. I drive his power wheelchair for him most of the time since he only has a little function in his left hand and none in his right. I usually back him down the ramps because it’s easier for me to control it that way. I have a threshold ramp we keep in the car. It has proved valuable many times to get into other people’s houses. We have a larger folding aluminum ramp in the house in case we need it.

NEXT ISSUE Elizabeth from New Jersey asks: “How do other women with MS transfer onto the commode — what do they do with all their clothes, be it slacks or skirt?” Members, please respond. Send answers to Jbyzek@unitedspinal.org or call 718.803.3782, ext. 7226, if you would prefer to be interviewed.

MS Perspectives research news

New Clinical Trial Participants are being sought for a phase Ib clinical research study of an investigational drug for the treatment of relapsing-remitting and secondaryprogressive MS. It is hoped that the investigational drug, an alpha-4 integrin inhibitor that prevents certain white blood cells from entering the central nervous system, may prevent inflammation. This in turn, it’s hoped, will reduce relapses, physical disability and cognitive decline. Developed by Elan, manufacturer of Tysabri, the inhibitor will be administered subcutaneously. The study will take place in 10 cities: Cordova, Tenn.; Newport Beach, Calif.; San Antonio, Fresno, Calif.; Raleigh, N.C.; Milwaukee; Berkeley Calif.; Salt Lake City, Northbrook, Ill., Knoxville, Tenn. For more information, including further details on how to qualify, go to www.rmstrials.com. MS glossary: While undergoing clinical trials, potential new medications are called “investigational drugs.” They aren’t called “drugs” until the FDA approves them.

Gilenya — Is It Right For You? Gilenya is the first FDA-approved oral drug for relapsing-remitting MS — no needles! Manufactured by Novartis, the drug works by preventing white blood cells from leaving the body’s lymph nodes and attacking the central nervous system, leading to significantly less flare-ups and potentially slowing down disability progression. There are a few serious warning signs, however, to watch out for: Slow Heart Rate. Also known as bradycardia, this may occur a few hours after your first dose and could be accompanied by dizziness, tiredness and palpitations. Infections. Since Gilenya reduces the number of white blood cells in your body, it could increase your risk of serious infections. Vision Problems. Specifically macular edema, which has similar symptoms to optic neuritis (i.e., light sensitivity, blurred or tinted vision, etc.) More common side-effects include flu-like symptoms, headache, diarrhea, back pain, cough, and liver enzyme elevations. Also, Gilenya costs $48,000 per year. Costs may be lower depending on insurance and if you are eligible for Novartis’ assistance program (www. pharma.us.novartis.com).

swimming with dolphins

Cathy Riechers

hile taking a cruise with my husband, I swam with a dolphin, a long-time dream of mine. As a woman with MS whose condition has fluctuated a lot lately, this experience changed my life. As I drove my rented scooter to the shore excursions office, I anticipated a hassle with our request to book this excursion. My husband, Mark, and I had taken a Royal Caribbean cruise recently, and the staff refused to book me on any excursions. But Ingrid at the Holland America shore excursions office could see how important the Dolphin Swim was to me. She asked me some personal questions about what I could and couldn’t do, and actually seemed to understand MS. To my delight, she said she would email the trainer to make sure the dolphin was comfortable with someone who has my level of disability — but she didn’t foresee a problem. The next day we were notified the trainer and dolphin were OK with my participation. I almost started to cry — my dream was coming true. At the dolphin center, we went to the swim pool arena and were greeted by the trainer. We also met the other people in our group — two other couples and one woman. I didn’t realize this was a group event. Suddenly, I was afraid

I would be a problem, but everybody was so helpful and just as uncoordinated in the water as I was. Everyone needed assistance, except my husband. Nobody treated me like I was “disabled,” and at the end we even took a group picture because we all bonded. Dolphins weigh about 400 pounds, are incredibly soft, and have eyes so enchanting it’s as if they understand you. We laughed and cheered each other on as we hugged, kissed and danced with this awesome gentle creature named Renoir. His calm demeanor made it a friendly and empowering experience. It was my dream come true. Things you should know ... • Everybody wears a life jacket and a swimsuit. • The trainer said we’d have to do some kneeling but I was able to just sit. • It’s a little slippery standing. The trainer literally had my back as he held onto my life jacket. Be honest with yourself and others about what you can really do, and communicate it to others. • No jewelry allowed, period. So I had to take my emergency bracelet off. • Be happy. Especially if this was the prize you had your eye on. Cathy Riechers, 48, was diagnosed with relapsing-remitting MS in 2004. She lives in Fond du Lac, Wisc., with Mark, her husband of 23 years.

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solutions

SCI Research and Clinical Trials

By Tom Scott

Update on Clinical Trials in China Clinical trials using transplanted umbilical cord blood cells and lithium to improve function in people with complete spinal cord injuries are going smoothly in China, according to Dr. Wise Young, director of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University. Young, one of the nation’s leading neuroscientists, discussed the progress of the trials he and his team are leading — and his hopes of starting U.S. trials by

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Rob Summers:

From Quad to Para and Beyond? Power Soccer Wheelchair Pretenders VSA Art: Not So ‘Special’ Anymore

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SEP 2011 $4

JUMP-STARTING THE INTELLIGENT SPINAL CORD Rob Summers may be on the way to becoming the first person with a complete motor spinal cord injury to recover voluntary control of movement. Life in Action’s sister publication, New Mobility, reports on recent results of epidural stimulation — and the long, winding path that led researchers to an exciting new discovery. To read the article, visit www.newmobility.com after Sep. 1 or call 888.850.0344, ext. 209 to subscribe (be sure to inquire about the member discount). Subscribers receive print and online access to features, departments and columns not available on the public website. 32

next summer — during a recent open house on the Rutgers campus. Studies have shown that umbilical cord cells enhance recovery in animals after SCI. Researchers have also discovered that lithium, a drug used to treat bipolar disorder, promotes the growth of these cells and regeneration of the spinal cord. Despite struggling to find people with SCI who qualified for the trials, Young started trials in Hong Kong in November with seven participants. He reports that at least two of the trial participants who received a higher dosage of cord blood cells experienced some sensory and motor function recovery. “The good news is that there have been no serious or adverse effects associated with the surgery or transplantation in these seven patients. Our surgeons also are comfortable performing the procedure, which involves exposing the spinal cord to inject the cells,” he says. In April, Young was able to raise $1.6 million and major publicity for his research with support of an

Asian television station that hosted a primetime fundraiser. This helped jumpstart a trial involving 20 people with SCI, set to begin in early August in KunMing, the capital and largest city in China’s Yunnan Province. The KunMing trial will include the most intensive locomotor training possible. “We will walk patients six hours per day, six days per week for six months after surgery,” explains Young. He is currently raising money and working on rehabilitation protocols to get FDA approval to start similar trials with 20 SCI survivors at Breckenridge Hospital in Austin, Texas. By July 2012, Young would like to begin multi-center cord blood trials in China and the U.S. simultaneously. Seven centers have already volunteered to participate. The U.S. trials will be less intensive, requiring participants to walk three miles per day, three days per week, for three months after transplantation — which will then be compared to data from participants in the more intensive Chinese trials.

Future Impact of Technology At a recent international conference, “The State of the Science of SCI Rehabilitation,” Michael Boninger, chair of the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh, and colleagues reported on how the next generation of technology will impact mobility. Robotics, neural prostheses, exoskeleton systems and direct brain interfaces hold the most promise for independence, but functional electrical stimulation devices are still in the game, they say, and faster computers will make all current and emerging technology work better. A major concern is how to take advantage of this technology while making it affordable to people with disabilities: “If third party payers do not approve a device, it will only be available to the wealthy and will

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

likely fail for lack of a market,” the team reported. “Companies with great ideas have gone out of business, because their products could not be coded and reimbursed.” Hence stories like that of the IBOT, the power chair that could climb stairs and balance on two wheels but was deemed not medically necessary and had to be discontinued without a successful reimbursement model. The team challenged the research community to advocate for a broader view on the impact of these products on daily living and quality of life, rather than focus on “medical necessity” — an interpretation that should not be left to regulators, third party payers or policymakers. For more on the conference, visit www.asia-iscos2011.org and click on “State of the Science.”

Exoskeleton Study A pilot study with the ReWalk Exoskeletal Walking System is underway at the James J. Peters Veterans Affairs Medical Center in Bronx, N.Y. Goals for participants include learning sit-to-stand and stand-tosit maneuvers, balancing while standing with one or two crutches, walking 30 feet in less than two minutes and walking 100 feet in less than six minutes. Some will learn to walk up and down four stairs in less than five minutes. The study will look at the practicality of walking, of course, but also effects of the ReWalk on bone loss, atrophy, skin integrity and other secondary conditions. To qualify, you must: • have had paraplegia for longer than six months • be between the ages of 18 and 65 • have a height between 63 and 75 inches • weigh less than 220 pounds • be able to sign an informed consent document. There are several additional exclusion criteria related to bone health and medical status that must be evaluated individually by the study team. If you meet these inclusion criteria and want to learn more about this project, call the VA RR&D National Center for Excellence for Medical Consequences of Spinal Cord Injury at 718.584.9000, ext. 5420, or email the project coordinator, Shevana Swaby, at shevana.swaby@va.gov or Drew Fineberg at drew.fineberg@va.gov.

Ask VetsFirst Q. I am an honorably discharged Navy veteran. I served as an aviation ordnance man in the early ’90s. I am pretty sure that I have problems with my back due to my Navy service. I often had to load ordnance onto jet aircraft by hand. My buddies tell me I should apply for compensation and pension from the VA. Am I eligible for either or both?

VetsFirst Responds If you think your medical problems are tied to injuries suffered during your service, you should definitely look into applying for compensation and pension. There are three key requirements the VA will look at to determine your eligibility. 1) Medical Diagnosis — a doctor’s diagnosis of a current disease or disorder 2) Evidence — proof the disease or disorder had its onset during active service or was aggravated during said service 3) Linkage — medical evidence showing it is “at least as likely as not” that the current disability is related to previous military service In your case, with a back or spinal cord injury, these three elements might look like this: 1) A letter from a doctor discussing your diagnosis and treatment 2) Records from a hospital, doctor’s office or clinic that show the diagnosis of your back problems AND a notation in the medical records from when you served that reflect complaints, treatment or test results (x-rays, ultrasound etc.) of your problems 3) A doctor’s statement that it is at least as likely as not that your current back problems stem from, or were aggravated during, your military service It’s worth noting that the VA also provides disability benefits for veterans who do not have any service-connected disorders. VA nonservice-connected (NSC) pension benefits are available when the veteran had at least 90 days of active military service with at least one day of service during a period of war, the veteran’s military discharge was under conditions other than dishonorable, and there is medical evidence that the veteran is totally disabled as the result of a disability not caused by their own willful misconduct. If you have more questions about compensation and pension, check out VetsFirst on the web at www.vetsfirst.org or by telephone at 718.803.3782.

J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

solutions

Travel: Cruising with the Pouloses

elen and William Poulos, a retired couple from Bartlett, Ill., took their first wheelchair-accessible cruise back in 2007. Looking back, Helen admits they were a little nervous. “We traveled independently before Bill became so very disabled,” she says. Bill, an Army veteran, is a full-time power chair-user with multiple sclerosis. Helen, a former human resources manager for a major retailer, is Bill’s primary personal care assistant. That first excursion was a Celebrity cruise through the Panama Canal. Four years later, the Pouloses just booked their seventh cruise. “This is the best way to travel, since most countries outside the U.S. are not accessible,” says Helen. A cruise, of course, is like a moving resort hotel. Once the Pouloses get settled onboard, they know they can stay put while the ship moves from place to place. For them that’s ideal, since venturing to new places on their own can be a big hassle. “We need to check everything out beforehand to be sure Bill can get in or out,” explains Helen. Anybody who knows anybody with any kind of disability gets what she’s talking about. So far, the Pouloses have been pleased to find enough accessible cruises with spacious cabins, grab bars and elevated toilets in bathrooms, wide doorways and corridors and even lifts into the pool and hot tub. But even in this day and age, you can’t count on cruise ship accessibility. There are varying degrees of accommodations, depending on the cruise line and on individual ships. So, to make trip planning easier, the Pouloses have come to rely on Mary Peterson, an accessible-travel consultant at Able to Travel (a program of United Spinal). Able to Travel has arranged cruises for the Pouloses to exotic locations such as Hawaii, Barbados, Costa Rica and the Mediterranean. But Panama remains their favorite. Bill enjoyed returning to a place where he had served in the Army, plus it had the most accessible off-ship excursions, says Helen. Indeed, getting on and off the boat remains one of the key concerns.

Though assistance at U.S. ports can usually be arranged, foreign ports are another matter. “It’s always disappointing when excursions are not for people who are in power chairs,” says Helen. “Basically, we are on the ship and cannot travel out to see the sights as others do.” Yet the situation is improving. “Cruise lines are now understanding that they need to have accessible ports and accessible shore excursions,” says Peterson. She says Royal Caribbean International and Celebrity Cruises, both owned by Royal Caribbean Cruises Ltd., are leaders in accessible tourism. Both offer “Easy” tours, which are billed as especially accommodating. For instance, on the Pouloses’ recent Mediterranean “Easy” tour cruise, Bill was able to take advantage of four different accessible shore excursions. Yet for onboard accessibility, even an accommodating cruise line can still have problems. “Many newer ships are much more accessible and have taken the proper procedures to make sure the rooms, balconies, common areas, etc., are accessible,” says Peterson. Nevertheless, she adds, “Most of the ships built in the 1990s or earlier have a lip in the doorway between the cabins and the balconies, to keep out the weather.” Needless to say, these lips keep out many wheelchair users, too. “We’d pay for a suite with a balcony, then find out it really isn’t level with the room … [making] it difficult for Bill to get out,” says Helen. Sometimes she and Bill had to ask cruise staff to install a ramp, which was an imperfect solution. Another consideration is getting to and from the ship’s launching point, unless you live near the dock. Usually a short air flight is necessary. The Pouloses remain leery of planes. “I would advise [travelers with disabilities] to check on the care of wheelchairs by

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

By Ben Mattlin

The Pouloses have cruised to many exotic locations such as Hawaii, Barbados, Costa Rica and the Mediterranean, but Panama, above, remains their favorite. Bill, left, enjoyed returning to a place where he had served in the Army, plus it had the most accessible off-ship excursions. When planning, one thing to ask about is balcony access: Some older ships still have high thresholds that block wheelchair users, but many modern cabins, like the one below, have smooth transitions to the lanai.

the airlines,” cautions Helen. “I had to get the captain involved once when Bill’s chair was totally taken apart. I’ve seen the crew unloading his chair and laughing as it came down on its side and then fell apart when it was lifted by the seat! These workers need to understand that the chair is Bill’s legs. If it’s broken, then he’s broken and cannot get around.” Able to Travel can help with airline and ground transport as well. Peterson tailors complete itineraries to individual access requirements. For some, she facilitates the rental of ramp-equipped vans, rolling commode chairs or chairto-bed lifts. For the Pouloses, Peterson arranged for a Hoyer lift to be delivered directly to their cruise ship. She could not, however, hire personal care assistants for them. On a recent trip the Pouloses brought along

their own helper. “She was a great help,” says Helen, “but this was very expensive, paying for her and her airfare and all.” Accessible travel is almost always costly, but considering how difficult it used to be, Peterson remains optimistic about the future. “Accessible tourism will continue to develop and evolve so those with disabilities can access the world,” she says. Members of NSCIA and United Spinal can book with Able to Travel for a $25 fee. For more information, visit www.abletotravel.org or call 888.211.3635.

Marketplace

It’s Your Community.

1988 Ford 350E - 106,000 Miles, Raised Roof, Lowered Floor, Braun Lift, VCR & TV, FM Radio, Brand new tires, Full Insurance till October 2011, cost $5,000. Power Hoyer Lift with Scale, cost $1,000. If interested please call John @ 757.471.1039 1997 FORD E-150 VAN CUSTOM CONVERSION, 55K, LOWERED FLOOR, HAND CONTROLS, LOW EFFORT STEERING/BRAKING EZLOCK, BRAUN LIFT, POWER DOOR, WELL MAINTAINED, NEW TIRES PLUS SNOWS. PICTURES AVAILABLE. $7,500 NEGOTIABLE, 516.741.6404. Practically brand new HS2800 C.T.M. wheelchair for sale in Staten Island, New York. Only used twice. Asking $100 - $200. Requires 2 new batteries. Must be picked up. Please contact Julianna @ 646.522.3927 or at juliannafarella@aol.com. Two extra sets of rims & tires plus quick release axles $175 or best offer. Used Max Pro Cushion $25 or best offer. Brand New Max Pro Cushion listed for $500, selling for $150 or best offer. Easy Lock $75 or best offer. 2 24” NEW Spinergy Wheels $120. 2003 Suzuki Motorcycle with side car adaptive for wheelchair user, electric lift gate, brand new motor, and electric shift $19,500 or best offer. Several different automotive hand controls $150 each or best offer. If interested please call John @ 609.587.0384. FOR SALE: “REDMAN” SPECIAL NEEDS POWER WHEELCHAIR. It will Drive, Tilt or Stand. The chair is in excellent condition. It normally sells for over $39,000 ...Yours for $8,000. Also, a high back “Jazzy” power chair ... $2,000. Located in Central Florida, by an individual. Leave message, if necessary. 352.365.0463. Free Manual Hoyer Lift. If you are interested and can make arrangements to pick it up, please call Antoinette @ 631.665.4050. Life in Action accepts free person-toperson ads from members and paid ads from all others. Please call Megan at 718.803.3782, ext. 7253 for pricing or to place an ad.

Get Involved! National Spinal Cord Injury Association has more than 60 chapters and peer support groups nationwide. Individual membership is free and open to individuals with spinal cord injuries or disorders, family members, caregivers and professionals. Member beneﬁts include: �� Life in Action ��

Learn more or join at www.spinalcord.org or call 800-962-9629.

a program of United Spinal Association

J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

solutions

30” MIN AT TUB

24” MIN AT DOOR

19” MAX

48” MIN AT LAV. LA

21”

3”

Accessibility consulting & trAining

MIN 24” GB

NSCIA Business Members

REINFORCEMENT

If the businesses you patronize are on this list, please thank them for supporting you and your fellow NSCIA members. If they aren’t on this list – ask them to join today!

1’ - 9”

Accessibility Services has worked with public housing authorities, private housing developers, professional sports venues, retail operators, architectural firms, and many others to help them untangle the often conflicting requirements of aesthetics and accessibility, keeping them informed of building code changes and revisions at all levels, and provide innovative solutions to accessibility at any type of facility. For more information, contact Accessibility Services at

info@accessibility-services.com toll free 866-249-2441 www.accessibility-services.com 3’ - 0” 48” MIN AT

Gold Coloplast www.us.coloplast.com Invacare www.invacare.com Mobility Works www.mobilityworks.com Pride Mobility www.pridemobility.com Sunrise Medical www.sunrisemedical.com United Seating and Mobility www.unitedseating.com

Silver American Medical Direct www.americanmedicaldirect.com Care.com www.care.com Chesapeake Rehab Equipment www.chesrehab.com The ROHO Group www.therohogroup.com Synapse Biomedical www.synapsebiomedical.com Wilmington Medical Supply www.wilmingtonmedicalsupply.com

Bronze Advisacare www.advisacare.com Ameriglide www.ameriglide.com Delta www.delta.com Falvello Law Firm www.falvellolaw.com Free Wheel www.gofreewheel.com My Grip Solutions www.mygripsolutions.com My Pleasure www.mypleasure.com Scootaround www.scootaround.com TiLite www.tilite.com WYNG PRODUCTS www.wyngproducts.com Acknowledgements on our website, in Life in Action, in NSCIA e-news or any other United Spinal publication should not be considered as endorsements of any product or service. It is the individual’s responsibility to make his or her own evaluation of such.

www.spinalcord.org/business 36

L I F E I N A C T I O N • J U LY / A U G U S T 2 0 1 1

NSCIA Hospital Members Did You KNOW...

NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of Hospital Members with links to their websites, and information on how your hospital can join NSCIA. CALIFORNIA Casa Colina Centers for Rehabilitation Pomona, CA, 909.596.7733 Northridge Hospital Medical Center Northridge, CA, 818.885.8500, Ext. 3669 COLORADO The Rocky Mountain Regional Spinal Injury System â&#x20AC;&#x201C; Craig Hospital Englewood, CO, 303.789.8306 WASHINGTON, D.C. National Capital Spinal Cord Injury Model System National Rehabilitation Hospital Washington, DC 202.877.1425; 202.877.1196 FLORIDA Broks Rehabilitation Hospital â&#x20AC;&#x201C; University of North Florida Jacksonville, FL, 904.858.7600 Pinecrest Rehabilitation Hospital (CARF) Delray Beach, FL, 561.495.0400 GEORGIA Georgia Regional Spinal Cord Injury Care System â&#x20AC;&#x201C; Shepherd Center, Inc. Atlanta, GA, 404.350.7591 ILLINOIS Memorial Medical Center Neuromuscular Sciences & Orthopedic Services Springfield, IL, 217.788.3000 INDIANA Rehabilitation Hospital of Indiana Indianapolis, IN, 317.329.2000 KENTUCKY Cardinal Hil Rehabilitation Hospital Lexington, KY, 859.254.5701 MARYLAND Adventist Rehabilitation Hospital of Maryland Rockville, MD, 240.864.6000 Johns Hopkins Hospital Baltimore, MD, 443.444.4700

Kennedy Krieger Institute Baltimore, MD, 443.923.9200 Kernan Orthopedics and Rehabilitation Baltimore, MD, 888.453.7626 MASACHUSETTS New England Regional SCI Center at Boston Medical Center Boston, MA, 617.638.8000 MICHIGAN Mary Freebed Rehabilitation Hospital Grand Rapids, MI, 616.242.0343 University of Michigan Model Spinal Cord Injury Care System Ann Arbor, MI, 734.763.0971 MISSOURI The Rehabilitation Institute of Kansas City Kansas City, MO, 816.751.7900 NEBRASKA Madona Rehabilitation Hospital Lincoln, NE, 402.486.8296 Alegent Immanuel Rehabilitation Center Omaha, NE, 402.572.2121

PENNSYLVANIA UPMC Institute for Rehabilitation & Research Pittsburgh, PA, 877.287.3422 The Wiliamsport Hospital and Medical Center Gibson Rehabilitation Center Williamsport, PA, 570.321.1000 SOUTH CAROLINA Healthsouth Rehabilitation Hospital Columbia, SC, 803.254.7777 TENNESSEE

Understanding the (ADA) Americans with Disabilities Act

TEXAS

TIRR Memorial Herman The Institute for Rehabilitation and Research) Houston, TX, 713.799.5000

Inova Mount Vernon Hospital Alexandria, VA, 703.664.7592

NEW YORK

Froedert Memorial Lutheran Hospital Milwaukee, WI, 414.805.3000

WISCONSIN

* * * ORGANIZATIONAL MEMBERS OF NSCIA

Moses Cone Health System Greensboro, NC, 336.832.7000

Florida SCI Resource Center St. Petersburg, FL, 866.313.2940

Carolinas Rehabilitation Charlotte, NC, 704.355.4300

Project Walk Carlsbad, CA, 760.431.9789

OHIO

Push to Walk Riverdale, NJ, 862.200.5848

Northeast Ohio Regional Spinal Cord Injury System Cleveland, OH, 216.778.8781

A Publication of

Texas Health Harris Methodist Forth Worth, TX, 817.820.4800

Northern New Jersey Spinal Cord Injury System Kessler Institute for Rehab West Orange, NJ, 973.243.6849

J. Paul Sticht Center on Aging and Rehabilitation Winston.Salem, NC, 888.605.9568

Baylor Institute for Rehabilitation Dallas, TX., 800.422.9567

VIRGINIA

NORTH CAROLINA

Tips On Interacting With People With Disabilities

Pa tricia Neal Rehabilitation Center Knoxville, TN, 865.541.3600

NEW JERSEY

Mount Sinai Spinal Cord Injury Model System New York, NY, 212.659.8587

DISABILITY ETIQUETTE

Quest to Walk Overland Park, KS, 913.451.1500

United Spinal Association United Spinal Association produces more than 30 produces over thirty brochures and pamphlets brochures and pamphlets on subjects like Disability from subjects like Disability Etiquette, Fire Safety Etiquette to Fire Safety for for Wheelchair Users at Wheelchair Users at Work Work and Home, and and Home to Understanding Understanding the can ADA the ADA that you that youor can purchase purchase download for or download for FREEFor on FREE on our website? our website. For more more information visit information visit www.unitedspinal.org. www.unitedspinal.org.

J U LY / A U G U S T 2 0 1 1 â&#x20AC;˘ L I F E I N A C T I O N

Last Laugh

mistaken for another wheelch Getting ai lead to a night of fun r r e us could .

Good t hings c ome in have a time, b Magic B ut you ullet fo r quick results .

Your Joke Here Got a great sense of humor? Send your funny photos, stories, cartoons or even just concepts about the lighter side of disability to lifeinaction@unitedspinal.org. Please include your contact information and the source of any work that is not your own. To share a funny disabilityrelated video, please visit us on Facebook at www.facebook.com/lifeinaction. Thanks in advance for the laughs!

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WHAT IS NEW MOBILITY ? New Mobility is ... A Reflection of our Readers. Rynita “DJ $hortness” McGuire

Missy Jenkins Smith

Glen Dick

spinstress

author

husband

myspace phenom

mom

father

graphic artist

counselor

mentor

tattoo enthusiast

survivor

conscious designer

Vital.

Creative. Life. Beyond Wheels.

Committed.

New Mobility Facebook fan since 2008.

of Missy Je nkins Smith Courtesey o

Missy Jenkins Smith, survivor of a high school shooting, not only forgave her attacker, she also interviewed him for her book, I Choose to Be Happy. Part of living fully, she believes, is facing difficult situations with grace and the certainty of your own wholeness. That message of vitality is one she shares with New Mobility: “I’m all here,” she says. “I’m alive.” And now she and her husband have brought new life into the world with two sons, Logan, pictured, and Carter, born in April.

Long before he got married and had a baby, Glen Dick — like New Mobility — made a commitment to life itself. “I had to stay committed to the faith, to the hope, that I had a future, that the disability didn’t define me and that my dreams could still come true,” he says. An active mentor, Glen was named Big Brother of the Year, worked full-time assisting in special ed classes, and now tutors a young man in environmentally conscious landscape design. “Now I’m committed to being a good husband and father,” he says, “and not missing a moment of this life.”

Imag e

DJ $hortness hits the rave scene weekly to spin sexy, soulful vinyl with two turntables and a mouthstick. “DJing is the ultimate form of self-expression,” she says. Spinning at the hottest clubs in Michigan, $hortness does whatever it takes to make it work — including changing records with her mouth. It’s all about creative thinking, she says — and, like New Mobility, moving beyond “the disability box.”

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“How about Bold, Innovative, Colorful, 1/3 Horizontal Sexy, LIBERATED and Resilient? Keep up the good work — NM is my favorite magazine.” — New Mobility reader Troy Horton, in response to the NM ad campaign above

New Mobility magazine is the perfect complement to Life in Action, bringing you leading-edge disability culture and expressive personal stories, as well as in-depth coverage of health, travel, transportation, legal rights and more. And NSCIA/United Spinal members get a great discount: a oneyear subscription (12 issues) for just $14.95 (regular rate $27.95). Call today!

Managing Body Image

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Achieving Women Gin and Raisins: Alt Meds that Work Angling Quads An Aggravating Antihero

newmobility.com

MAY 2011 $4

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Upcoming stories: • Actor Michael Patrick Thornton • Second Life: Disability and Virtual Worlds • Blatant Airline Discrimination • Helicopter Skiing • Letting Go of Fear • Battle of the Bulge

www.newmobility.com

Life. Beyond Wheels. J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

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