SEPTEMBER-OCTOBER 2013
SCI/D and Friendship: Adjusting Post-Injury A Friend’s Perspective A Different Kind of Friend
Travel
Sweden
Advocacy
NSCIA Leadership Conference
MS Life
Dancing with Jack Osbourne
Our Impact
Kids Sports Spectacular
The official publication of NSCIA, a program of United Spinal Association www.spinalcord.org
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Life in Action is the membership publication of National Spinal Cord Injury Association, a program of United Spinal Association. Our mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D). SEPTEMBER/OCTOBER 2013 / VOL. 3 / ISSUE 5
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
VP of Sales and Marketing Amy Blackmore Account Executive Megan Lee 800.404.2898, ext. 7253 / mlee@unitedspinal.org Ad Materials Deanna Fike 800.404.2898, ext. 7258 / dfike@unitedspinal.org
MEMBER SERVICES
(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 David C. Cooper Vice Chair Patrick W. Maher Secretary Denise A. McQuade Treasurer Michele A. Leahy President & CEO Paul J. Tobin
DIRECTORS
Marty Ball, David C. Cooper, Janeen Earwood, David Estrada, Esq., Gretchen A. Fox, OTR, Lex Frieden, Joseph Gaskins, Andy Hicks, Carmen D. Jones, Michele A. Leahy, Patrick W. Maher, Denise A. McQuade, Terence J. Moakley, Ronnie E. Raymond, Laura G. Schwanger, Paul J. Tobin (Ex-Officio), Martin Young, Leonard F. Zandrow, Esq.
Membership Benefit Highlights Member benefits are continually being updated, so stay tuned for more. Current highlights include:
• Life in Action, our member publication. Look for some changes in upcoming issues: We’ll be empha-
sizing advocacy more in the print publication — including ways for you to become more involved — and offering you new ways to tap into general SCI/D information. (In 2014, most general SCI/D info will move from Life in Action to webinars, www.spinalcord.org or our sister publication, New Mobility.)
• Member pricing on New Mobility, our award-winning monthly magazine for wheelchair users who want to live “life beyond wheels.” Known for its in-depth coverage of SCI/D health, travel, products, recreation, relationships — and everything else you need to live an active lifestyle — New Mobility is now available to members for just $14.95/year. Call toll-free 800.404.2898, ext. 7260, and mention that you are a member. Note: The full October issue of New Mobility will be open to the public at www. newmobility.com — check out the new issue and the archives to see if a subscription is right for you. • 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 150 NSCIA chapters and support groups nationwide. For a list of chapters and support groups, visit www.spinalcord.org or call 800.962.9629 for the latest additions. • Discount at Able to Travel, our in-house travel agency, where you’ll work with a travel agent knowledgeable about the access issues that can arise during a trip. Members pay only $35 per person. • Member pricing on Spinal Network: The Total Wheelchair Resource Book. Spinal Network is the essential resource for making important life choices after spinal injury, multiple sclerosis, ALS and other conditions. Everything you want to know about health, technology, travel, sports, relationships, parenting and much more. Members pay only $17.95 and shipping is free (regular price is $29.95 plus $10 shipping). Call 800.404.2898, ext. 7260, and use code LIA13 when ordering. • Member pricing on Enabling Romance: A Guide to Love, Sex and Relationships for People with Disabilities (and the People who Care About Them) and The Complete Product Guide for People with Disabilities (3rd edition). $10 each plus free shipping! Call toll-free 800.404.2898, ext. 7260, and mention that you are a member. 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. DIRECT SERVICE OFFICES
© 2013 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 (U.S. funds drawn on a U.S. bank).
INFORMATION AND REFERRAL
Spinal Cord Central (voice) 800.962.9629 (fax) 866.387.2196 help@spinalcordcentral.org www.spinalcordcentral.org Priority access for members — your questions go to the top of the list.
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SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
3
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[contents]
Editor’s Note
the power of friendship Ian Ruder
L
Best friends: 17
ooking back on all the hours of physical and occupational therapy I went through after being paralyzed and all the other
rehab-related things I did to get back to living my life, I can’t think of any single thing that had more of a beneficial impact on me than the constant support of my friends. Whether it was an unexpected hospital visit, a movie night or simply a phone call, my friends were always there to buoy my spirits. I appreciated their support and friendship at the time, but looking back I’m not sure I comprehended the impact they really had. They reminded me of all the things I wanted
FRIENDSHIP 16 Friends: What Happens After SCI/D? Some friends may go, but good ones stay. Members share their experience with adjusting to changed relationships with their peers.
18 Tips: Learning to See Beyond the Chair Rob Hope realized he had some self-educating to do when he befriended two guys in chairs. He’s written a book to pay it forward.
20 A Different Breed of Friend: Literally The unconditional love of a friend means the world to Scott Fedor, who shares his home with a loyal service monkey, Melanie.
to get back to enjoying. They gave me a reason to keep going. In the sometimes bleak world of SCI, it’s critical to have fun escapes that shift
SOLUTIONS 22 Ask Anything 24 Dating/Relating 26 TechGuide 27 Access 28 MS Life 30 Travel 31 Marketplace
COMMUNITY
32 Hospital Members
your focus away from bladder control, pres-
6 Letters to the Editor
11 Chapter News
sure sores and access issues to more important
7 United Spinal in Action
12 Members in Action
33 Business Members
things like drinks with friends, game night and
8 Advocacy
14 Member News
34 Calendar
having fun. There’s no better prescription for
10 Note to Members
15 Family Matters
that than time with friends. Using a wheelchair shouldn’t impede on having vibrant friendships, but unfortunately, sometimes it does. Whether it’s an old friend
[contributors]
who doesn’t know how to broach discussing
Cover photo by WorthingtonVisuals.com
your changed circumstances, a new friend who obsesses over the details of your injury or the logistics of hanging out somewhere accessible — figuring out how to build and maintain lasting friendships can be tricky with a spinal cord injury or disorder. In this issue we’ll look into some of the obstacles that can get in the way and share some solutions that will hopefully help you enjoy all the fun on your terms.
Deborah Davis is co-founder and owner of PUSHLiving Enterprises and its divisions Travability.travel and PhotoAbility.net. She has also achieved success in marketing, advocacy, mentoring and public speaking.
Earle Powdrell is an aerospace engineer, family man and advocate. He lives outside Houston with his wife, Kathy, and devotes much of his time to unlocking Locked-In Syndrome.
Fran Folsom is a journalist based in Cambridge, Massachusetts. She writes extensively about travel, art and artists, culture, and history.
Erica Jacques is an occupational therapist with over 12 years of rehab experience. She lives in Central Florida with her husband and daughter, and enjoys reading, writing and all things Disney.
SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
5
[community]
Letters Discriminating Language Being a person with a disability — hereditary cerebellar ataxia — I read with interest [and with admiration for the author’s accomplishments] James Weisman›s commentary on pages 21-22 of your July/ August edition. However, I object strenuously to his combined use of “blacks or Jews” with reference to workplace discrimination. Allow me to point out that blacks are subject to discrimination based an obvious visible characteristic; Jewish persons are not. William Alden Lee Commander, USN (Ret) Doylestown, Pennsylvania
Why Our Voices Matter In the last four years of going to our capital to bring awareness and now legislative changes, the message I have heard from politicians is that they want (and need) to hear from us, how policies affect us. Most congress people associate Medicare and wheelchairs with older folks as they haven’t met many younger rollers, but times are changing. With the ADA and improvements in medicine and Disability Rights: technology, there are more people with disabilities of all ages out and about, living full lives, than at any other time in our history. They need to hear our voices, how our wheels get us from place to Travel MS Life place, from work to Access Family Matters home, from church to coffee shop, from restaurant to library — and why it is important that we have the right wheels to keep us healthy. JULY-AUGUST 2013
Roll on Capitol Hill Advocacy Perspectives The ADA: Looking Back
Dogsled Adventure
Retraining the Immune System
A Caregiver’s Feelings
Skiing
The official publication of NSCIA, a program of United Spinal Association www.spinalcord.org
The best part about United Spinal’s Roll on Capitol Hill (ROCH) is that it was just “us” — the people that are directly affected by the current policies. Senior Counsel and Disability Policy Director for the Senate Health, Education, Labor and Pensions (HELP) Committee, Andy Imparato, commented that it was about time the consumers had a pure voice (without wheelchair vendors or suppliers). If we sit back and accept the pressure sores from improper seating/positioning, endure the neck/shoul6
Peer Perspective der/arm pain or carpal tunnel because our propelling is not ergonomic, accept a wheelchair that we know is not what we need or want because we tire of the fight and denials, we will lose this battle. To win, we need to raise our collective voices in stories and tell them often and tell them to people who have the power to make changes. You can do this in many ways. Call, write or email your senators and representatives — you helped vote them in, and you can help vote them out, so they should be listening. Try to attend local town halls or meetings. Visit offices on the Hill. There is power in sharing your story because it may be helping many more rollers than just yourself. Once you feel that, you will be hooked. The ADA has helped the environment become more accessible, so why can’t we have the wheelchair that best allows us to use that environment — now and in the future? Jen Wolff Waverly, Iowa
Making a Difference Already Since attending ROCH2013, making contact with my local congressman’s aides and presenting them with information on the Convention on the Rights of Persons with Disabilities (CRPD), I have come to find out that my congressman is supporting it. I have just recently contacted my congressman about the Centers for Medicare and Medicaid Services’ competitive bidding program. Just two days ago I got a response from my him, informing me that he has co-sponsored a couple of bills that would address some of the negative issues regarding that program. ROCH2013 taught me how contacting my representatives can help me and others in the community and the nation. I have learned that constant contact with my legislators can be beneficial in the fact that they know their constituents are interested in the issues that affect them and that they will speak up. Attending ROCH2013 was such a wonderful learning experience for me, not only in how to correspond with my legislators, but also in making some wonderful contacts with other disabled folks that live in my area and also around the nation. I now correspond regularly with many of the people I met to discuss issues that affect us. I look forward to ROCH2014, as I see nothing but greater things coming. Kevin Weilacher North Canton, Ohio
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
Q: Is fishing an option post-SCI? I used to live on the water, but now all I can think about is falling in and sinking.
[Oklahoma Member] Willis Washington Responds After my motorcycle accident three and a half years ago I had decided that fishing out on a lake was not in my future. Boy, was I wrong. Some friends invited me to take part in a PVA Bass Fishing Tournament here in Oklahoma and I am hooked. How could I have known these bass boats are like Suzuki Hayabusa Motorcycles on the water? What a rush! I hadn’t been fishing since I was probably 13. I’m 41 now, and had some nerves about being out on the water in my chair. I realized that, as with so much else post-SCI, it’s all about being comfortable in your own skin. We drove to the event on a Friday night and were on the water by 4 a.m. Saturday morning. Even though it had been almost 30 years since I had fished, I still remembered how to cast and soon had hooked three or four small bass. I threw them back because they didn’t meet the size requirement. As we whipped around the lake at upwards of 50 mph, I held tightly to a handle on the boat. I guess you could be strapped down, but you definitely would have to have some fast snaps in case the boat overturns. I had a lifejacket on and was surrounded with skilled swimmers. As the day went on, I caught perch and multiple catfish, but no qualifying bass. By the end of the day, our captain had nicknamed me “Catfish Willie” for my penchant for hooking catfish. “You’re the only guy I know who comes to a bass fishing tournament and catches catfish,” he told me, laughing. At the end of the day I was so glad I had taken a chance and gone. I wound up having the time of my life.
United Spinal in Action Sharing Resources for SCI Awareness Month During September, United Spinal and Allsup, a nationwide provider of Social Security Disability Insurance (SSDI) representation and veterans disability appeals, teamed up to highlight assistance and resources for those living with SCI in recognition of Spinal Cord Injury Awareness Month. The Centers for Disease Control reports that the average annual medical cost for individuals with SCI is $15,000–$30,000, with an estimated lifetime cost of $500,000 to more than $3 million, depending on the severity of the injury. If a person with SCI expects to be out of work for at least 12 months, he or she may be eligible for Social Security Disability Insurance (SSDI) benefits. SSDI is a federally mandated disability insurance program employers and employees pay for through payroll (FICA) taxes. SSDI provides monthly benefits to individuals under full retirement age who can no longer work because of a severe disability. They qualify for Medicare 24 months after their SSDI eligibility date. However, obtaining SSDI benefits is not easy. More than two-thirds of initial applications are denied. “As soon as you know you have a medical condition that will keep you from doing any work for at least 12 months, you should apply for SSDI,” says Edward Swierczek, Allsup senior claimant representative. “Let your treating physicians know you are applying for Social Security Disability Insurance benefits and ask for their support. “Be prepared for the Social Security Administration to tell you that you can do ‘other’ work if you have a significant impairment that precludes your past work and you are under age 50.” (For more advice on applying for benefits, see Ask Anything, page 22) Despite high unemployment rates among people with disabilities, about a third of people with spinal cord injuries continue to work. “Being an active member of the workforce is part of our identity and helps define our role in American culture. It is important for people to know that despite severe disabilities, people can re-enter the workforce and put themselves on the path to economic independence,” says Paul Tobin, United Spinal’s president and CEO. “United Spinal Association is committed to ensuring that people with spinal cord injuries and disorders are educated about work opportunities afforded by the Americans with Disabilities Act and the wide range of programs and services that enable our members to reach their employment goals,” he adds. For more information on SSDI and a free eligibility
screening, call the Allsup Disability Evaluation Center at 888.841.2126 or visit Expert.Allsup.com for a free SSDI evaluation.
Wheelchair Users Meet With Congress In coordination with National Complex Rehab Technology (CRT) week, this September wheelchair users from 34 states and United Spinal was well-represented at Permobil’s 3rd Annual Charity Golf Tournament, held the District of Columbia Sep. 20 at the Hermitage Golf Course in Nashville. Pictured here are Paul Tobin, president, organized and mobilized and Ann Eubank, vice president of community initiatives (in black). to meet with congressional aims to raise awareness of the importance of mobility representatives to encourage them to sign on to a bill equipment for people living with spinal cord injuries and that will increase access to good wheelchairs. The bill’s disorders. name is Ensuring Access to Quality Complex RehabiliInsurers, Medicaid & Medicare, have restricted actation Technology Act of 2013 – HR 942 in the House cess to properly configured mobility equipment, risking and S. 948 in the Senate. the health and well-being of wheelchair users in order to People from across the country used social media to save money. contact UsersFirst (www.usersfirst.org), the grassroots “We are grateful for Permobil’s support to ensure advocacy program for United Spinal, to facilitate conall people with mobility impairment receive properly gressional meetings. configured mobility equipment so that they can live with “This effort has been exhilarating for everyone inindependence and pursue their goals,” said Paul J. Tobin, volved as people connect, coordinate transportation and United Spinal’s president and CEO. prepare for their meetings,” says Ann Eubank Ann Eu“The more the public is aware that appropriate wheelbank, LMSW, OTR/L, ATP, VP Community Initiatives, chairs are vital to health and independence, the greater UsersFirst. “As a grassroots program we consider people impact our advocacy efforts will have on the state and who are willing to take action and stay connected ‘grasnational level to increase access to this critical equipstops.’ Through our collective efforts we have created ment,” Tobin added. political leverage. We bring real-life examples of how The tournament was held at the Hermitage Golf people with disabilities are affected by specific policies. Course in Nashville, Tenn., on Sep. 20, 2013. Congress is hungry for these stories – to hear from you. They cannot be experts in everything and we must teach them about this type of equipment and how vital it is to remain healthy and independent.” If you would like to contact your representatives, tell your story or get help to organize a meeting, please email usersfirst@unitedspinal.org. They will connect you with others in your state, provide informational materials, and help you get an appointment.
Golf Tournament Benefits United Spinal United Spinal was named beneficiary of Permobil’s 3rd Annual Charity Golf Tournament. The annual event, held by one of the leading wheelchair manufacturers,
Global Spectrum Fundraisers United Spinal was assisted by Global Spectrum in raising funds at numerous nationwide events in recognition of National Spinal Cord Injury Awareness Month to improve the lives of people with spinal cord injuries. “We have been involved in Spinal Cord Injury Awareness at our headquarters in Philadelphia for many years and felt it was important to take this nationally,” said John Page, Global Spectrum’s chief operating officer. “Working closely within our community and doing work with nonprofit organizations is a top priority for our company. We are happy to be working so closely with United Spinal on this worthy endeavor,” adds Page.
SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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community
Advocacy: Coming Together to Lead
hapter leaders representing the 44,000-plus members of NSCIA and United Spinal recently gathered in Florida to continue building and strengthening the largest SCI/D organization in the country. The highly air-conditioned hotel conference room did not chill our spirits as we shared our successes and challenges and focused on plans for the upcoming year. As a peer-run organization, NSCIA/United Spinal focuses on real-life issues reported by our members, so fittingly, we discussed our members’ daily obstacles to living the lives we choose. The conversation was rich, yet not uncommon to chapter leaders and probably to people with disabilities everywhere. The obstacles fac-
ing our members can bring everyday life to a halt. For example, we discussed how essential the right wheelchair is to being successful with one’s daily routine. Bottom line, all the curb cuts in the world are worthless without a wheelchair that meets our medical and functional needs. As a group we acknowledged how disheartened we are that more and more insurance companies refuse to cover the type of wheelchair that works best. What’s worse is sometimes insurance companies state that a wheelchair is to be used “only in the home.” This “in the home” Medicare language has spread throughout the private insurance industry like the plague. NSCIA/United Spinal’s policy department challenges it with fervor. Another prominent issue with our members is the lack of access to wheelchair repairs or a supplier who is located within a reasonable distance. We understand that Medicare is trying to save dollars, but on the backs of wheelchair users? The official name for this Medicare issue is “competitive bidding.” It is what it sounds like; Medicare picks the medical equipment supplier who bids the most rock-bottom price. This results in the cheapest equipment and the worst service — another key issue on the radar of the NSCIA/United Spinal policy department. We also recognize that while private insurance companies are making record profits, it is becoming more and more difficult to get the wheelchair that works best in our lives. Many of our members report waiting for months and sometimes over a year before actually receiving their wheelchair. One would think
insurance companies would want us to be as active and healthy as possible! Other issues discussed were: access to affordable accessible housing; assisting people with disabilities to live either independently or with others, but not in a nursing home; affordability of service animals; employment; public transportation; and changing the earning threshold of people using disability social security. At this point, it is not prudent to jump off of SSDI without a solid plan. If you lose your job, it takes two years to get back on. We don’t think the policy makers understand that people with a disability may literally perish, from lack of medical care, medication, catheters, etc. within the time it takes for SSDI to kick in. The conversation was intense in moments, yet these very personal challenges galvanized the chapter leaders. Once the issues were on the table for discussion, strategies to organize and mobilize were developed. Each chapter has a designated policy advisor who maintains contact with the policy department. This organization bolsters our grassroots efforts and strengthens our ability to act swiftly when specific policies affect our members and the community of people with disabilities. The meeting was inspiring, motivating and encouraging — elements necessary to sustain our energy and maintain our sharp focus. We eventually adjourned and made our way to dinner under the Florida sunset, all the while the conversation remained rich with ideas and commitments. — Ann Eubank
ORLANDO — A sweeping scan of the banquet hall in the north tower of the World Center Marriott quickly reveals the national face of grassroots, neurological activism. There’s Willis Washington, the Oklahoma policy adviser and chapter president, who spent little time feeling sorry for himself after a nasty motorcycle accident left him paralyzed. Instead, Washington targeted the door that opened when the old one closed and has rolled into a spot as an up-and-coming civil rights leader. There’s George Gallego of New York City, the awardwinning iron-man athlete whose chiseled features and feats of wheelchair strength are only surpassed by his vast insight on how to improve housing options for people with disabilities. Don’t forget Todd Johnston of Connecticut and his service dog, Madden, one of the most charming golden Labs you’ll ever pet. Johnston seeks more training for caregiver agencies so seven-week certified newbie CNAs can improve their skills — and bedside manner. Or Hector Del Valle, the central Florida quad with an innate sense of curiosity and an insatiable thirst for new ideas. Can we leverage crip buying power to cut
a deal with Apple to get disability-friendly iPads into members’ hands at a discount rate, Del Valle wondered aloud at this summer’s conference. And what about young activists Adam and Jessica Harthcock of Nashville and their service dog, Ozzie. Over a drink poolside, the insanely cute couple related the details of a Hallmark made-for- TV romance. Check out the great strides they are making at their newly launched website, Utilize Health — www.utilizeheath. co. Jessica said she came away from the conference “energized and enthusiastic.” Those are just some of the emotionally charged stories related by 25 wheelchair users from across the country who came together at United Spinal’s August leadership conference to live, laugh and learn. After only a few days, many conference participants expressed a growing esprit de corps — a warm feeling of forward momentum proving there is a cause much greater than themselves for which to fight. And win. “It was a feeling like, ‘wow, we’re part of something bigger here,’” said Johnston. “We are stronger together than individuals.” That strength is the foundation to launch a spirited
assault on the critics of the Convention on the Rights of Persons with Disabilities. It is the fuel igniting the spirit to stand up and say that access to good wheelchairs is not only the right thing to do, but a fiscally prudent step to reign in the skyrocketing cost of healthcare. And it’s how we rally to stand up for a grandmother in Small Town, Kan., who worries she can’t get her liquid oxygen because new competitive bidding rules are forcing her to use an unfamiliar supplier hundreds of miles away that provides inferior equipment and service. Cheapest-cost bidding may be fine for dented cans of green beans at the local grocer — or public infrastructure projects with regulated bid and contract standards. But the lives of human beings are not discount purchases with which to trifle at the lowest possible cost. Those of us in attendance in Orlando know that because those are the obstacles we all face daily. We learn from each bright and brilliant advocate gathered together for one pleasant moment to share stories of success and failure over a wildly overpriced Long Island Iced Tea in the sunny southern climes of Florida. Now, the hard work begins. — Finn Bullers
Chapter leaders, including Finn Bullers (back right), share ideas at the recent NSCIA leadership conference in Florida.
C
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LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
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SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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community
C
Note to Members
onventional wisdom is that change is the only constant. Since my last column a number of changes have swept through our organization, not all of them through our doing.
The PerfIC Cath
TM
Closed System Intermittent Catheter Ease of use with limited or normal dexterity Reduced risk of infection Easy to open packaging Numerous convenience features Now with an 1000cc collection bag Finger Loops
Hook Gel Chamber with Gripping Device
Sheath
Remembering Cedrian Wheeler
Unfortunately, yes, you read that right. Out of the clear blue, on August 13, we were stunned by the tragic news that our very own Cedrian Wheeler Welcome New — someone who had started workthe winds of Staff Members ing in our organization as a teen change Jane Wierbicky, RN, MS, Nurse and went on to become a National Information Specialist. Jane comes Service Officer and an integral part to us with a vast amount of SCI nursPaul J. Tobin of our VetsFirst division — died President and CEO ing experience in the Boston area. suddenly while commuting to work. Jane will be picking up where CharThe news sent shock waves through leene left off in our Spinal Cord Central resource center. the entire United Spinal/NSCIA family, some of whom Christopher Neiweem, Director of Veterans Policy, knew Cedrian for nearly three decades. Cedrian, who among other interests, had a love affair with technology, VetsFirst, a program of United Spinal Association. handled our Ask VetsFirst queries and also assisted with Christopher is an Operation Iraqi Freedom veteran who has experience working on Capitol Hill advocating for our veterans benefits caseload. His friendly, cheerful policies and programs that impact veterans and their presence has left a void that we are almost loath to mention but is nevertheless present. Our deepest sympathies families. We look forward to Christopher making a substantive impact on the lives of disabled veterans go to Cedrian’s family for the tremendous loss of this through his staunch advocacy work. 42-year-young man who seemed to have his whole life ahead of him. Blessings, and may he rest in peace.
Thank you Charleene Frazier, RN, MS!
View videos on the PerfIC Cath at
www.adaptamedical.com Customer Support & Dealer Information 855-329-8355 info@adaptamedical.com 7030-0514 Rev 1
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view our online resource materials, provide guidance on complicated medical questions, and help us to connect individuals with appropriate resources, such as rehab center specialty services. This is my official thank you to Charleene Frazier, RN, MS, on behalf of the many members, families and friends that she helped through the years. Thank you, Charleene, and Godspeed!
Charleene Frazier, esteemed Nurse Information Specialist for over 15 years, retired on August 9. Charleene came to NSCIA with a vast amount of experience in SCI rehabilitation nursing and nursing education and was a lynch pin in NSCIA’s resource center, Spinal Cord Central. Her hallmarks were attentive, caring, compassionate and professional service, all geared toward providing the best possible direction for any given need. Charleene always kept abreast of emerging trends and knowledge in the field of SCI/D nursing as well as cutting-edge research, all in an effort to provide the best service possible to people seeking guidance at pivotal points in their lives. Charleene’s passion and dedication truly set the tone for the quality of service provided by our entire resource center staff. Charleene was instrumental to the formation of NSCIA’s Medical & Scientific Advisory Committee (MSAC), which is more robust than ever, with members representing a myriad of specialties serving the SCI/D population. MSAC members help re-
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
Promotions Heather Ansley, Esq., MSW, has been promoted to the position of Vice President for VetsFirst. Heather will be overseeing both the benefits and policy arms of VetsFirst, and I’m proud to say that her passion and dedication to our mission are indefatigable. Christine Golden has been promoted to the position of National Service Director, with oversight of VetsFirst’ benefits division. Christine’s enthusiasm and dedication give me comfort that our trust is well placed.
Innovations Finally, change is often times facilitated through innovation. I am pleased to introduce you to AbleRoad, a free smartphone app for iPhone and Android that allows people with disabilities to discover and review the accessibility of public places such as restaurants, hotels, medical facilities, shopping, etc. Essentially, if you can find a listing for a place on Yelp, then you can rate the accessibility. Kevin McGuire, a member of our fine organization, is the brain behind this app, and our shared goal is that every person in our community uses AbleRoad to highlight businesses that accommodate wheelchair users. Check it out at www.ableroad.com.
Chapter News
Quiet Drive
Pittsburgh Group Forges Steel Connection to NSCIA
™
Since its inception four years ago, the SCI Peer Support Group at the University of Pittsburgh Model Center on Spinal Cord Injury has done nothing but grow. What started small with one monthly meeting consisting of a few inpatients, has grown into a thriving group with over 200 members from all over the Pittsburgh area and well-attended events and meetings. After all that growth, joining up with NSCIA and United Spinal seemed like the
Hear what you’ve been missing. Wheelchair access used to come at a price: more road noise, a louder cabin ... and a lot of shouting instead of talking. With our new Quiet Drive™ technology, you’ll be able to enjoy your BraunAbility minivan in peace and quiet at last. Have a conversation with a passenger in the back next logical step according to Bryan McCormick, the group’s longtime facilitator. The group will now serve as the Pittsburgh chapter of NSCIA, with McCormick serving as chapter president. Any nerves McCormick had about making the move have been assuaged by the members’ response. “Now that I see people are eagerly volunteering to become involved, that’s definitely reassuring to me,” he says. “The fact that people want to be involved and be on committees and take things and run with them has been great.” To date, the group has focused primarily on peer mentoring and support for people with spinal cord injuries. An annual Wheelchair Wash & Tune Up has grown into a big draw, as has the annual holiday party. McCormick is eager to tap into United Spinal’s policy and advocacy expertise and get his members involved. “That’s always been something that people always talk about but we’ve never actively done something like that,” he says. He also wants to look into what the chapter can do to improve housing options for community members with spinal cord injuries. You can find the Pittsburgh chapter online at http://upmc-sci. pitt.edu/sci-peer and on Facebook.
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community
Members in Action [Texas Member] Chris Salas: ‘Necessary and Important’ Work
T
exas member Chris Salas often jokes with cal support group for people with SCI and his friends about how his ability to juggle their caregivers. his busy schedule and many responsibili“The amount of things that he gets ties would make him a perfect fit for the circus, done in a day is amazing,” says Gumbert. but there is no joking about Salas’s impact on the “He’s going to school, he’s advocating for South Texas SCI community. all people with disabilities all over San “It seems like everyone with a spinal cord injury Antonio, and talking to all kinds of groups in San Antonio knows who he is,” says Wendy — every week he tells me another story Gumbert, the director of South Texas Regional of another 60 PT students he talked to or Adaptive and Paralympics Sports (STRAPS). “He is another college he talked to.” totally pushing the independence issue out there Salas says he is making up for the time to everyone.” when he wasn’t as involved in the SCI STRAPS is one of the many areas where Salas community. “This is what I am supposed has used his passion for getting people involved and to be doing,” he says. “It’s all stuff that is his innate networking skills to make a huge impact. necessary and important, but there aren’t Gumbert credits Salas, the program’s director of a lot of people willing to put in the time to athlete recruitment and development, with helping make change.” grow the year-old program and making sure that He says Rolling Inspiration is at the people who want to play wheelchair soccer and heart of his efforts. “The proudest thing Refereeing power soccer is one of the many ways that Texas member Chris Salas connects with his local SCI/D community. power soccer are able to. for me is getting the feedback from the “His everyday life is recruiting people to get people who have known [the groups out and participate,” says Gumbert. attendees] since the beginning of their injury or diagnosis,” he says. “To get that A car accident 16 years ago left Salas, 37, a C5 incomplete quad. In addition to feedback saying how much change they have seen from Rolling Inspiration or the STRAPS, he is a fulltime psychology student, a peer mentor, an ardent advocate impact the group has had on that person. Just knowing that I’ve played a small for people with disabilities and the founder and director of Rolling Inspiration, a lo- part in changing lives and getting people back out is great.”
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LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
Racing for a Cause 50 marathons in 50 states in 50 weeks is an ambitious goal for any individual. 50 marathons in 50 states in 50 weeks for three guys in wheelchairs? That’s borderline crazy. But that Custom wheeled travel case Whenis the yachallenge Gotta that Go,KenIt'll Go With Ya!" available. tucky member Paul Erway and teammates Grant Berthiaume and Aaron Roux have taken on. While Trying to complete 50 marathons in 50 weeks hasn’t Berthiaume, a T10 para, stopped Kentucky member Paul Erway (above right) from and Roux, a C6/7 quad, are taking time to meet and greet the locals in each of the full-time athletes, Erway, a communities he visits. T4/5 para, is working full time in between races. “It’s part of the challenge,” he says. “I’m trying to prove the point that you can have a disability and you can do physically challenging things and still have jobs with a disability.” Since starting their adventure Jan. 5 in Mississippi, the group has rolled through 34 of the 48 marathons it has registered for. Two states didn’t have marathons that fit the schedule. They are working to find alternatives. Making their accomplishment even more impressive is that the trio is footing almost all the bills itself. Erway says registration fees alone are well over $15,000. To save on money, the three men share hotel rooms, packing all of their gear, their normal chairs and their race chairs into one small hotel or motel room. “We’ve had to leave our racing chairs in the hallway overnight and cross our fingers a few times because there simply wasn’t enough space,” says Erway. “We’re getting down to where the credit cards are pretty thin right now.” Add in crazy travel schedules, delays and a multitude of unforeseeable obstacles and the going has been anything but smooth. “We realized it was going to hurt,” he says. “With any challenge you’ve got to have a reason of why you wanted to do something this crazy.” For Erway, Berthiaume and Roux, that reason is raising funds for the Christopher & Dana Reeve Foundation. While donations and sponsorships have been slow to trickle in, Erway is optimistic that the endeavor will soon catch the public’s interest. “It’s going to take off,” he says. “Pretty soon, we might meet that million dollar [goal] that we’re shooting for.” The group’s final marathon is scheduled for Dec. 8 in Honolulu. If you’d like to support Erway, Berthiaume and Roux, visit http:// www.50abilitymarathons.com/.
Still Looking Up Maryland member Fred Gordon has published, “Still Looking Up,” a candid autobiography detailing his early life dealing drugs, the accident that changed his life and how he adapted to life as a quadriplegic. For more information or to buy his book, visit his website www.stilllookingup.com.
Family Matters still on the hook Kate Matelan
“B
ecause that’s the only place she can feel it!” explained my brother. Yes, my brother, Brooks, had to plead his case to my parents after he smacked me in the head when we were wrestling around and being kids. It may have only been a short while after I returned home post-auto accident and physical rehab, but that didn’t mean Brooks would let me off the hook. After all, he still was my older brother and me his annoying, 5-year-old little sister. This time around I just happened to be in a chair. Whether before or after my injury, my family has remained mainly the same. We poke fun at each other, go on vacations together, and at the time, did our chores together. I wasn’t going to get out of dusting the house or wiping down the kitchen table; my parents pushed me back into my regular routine. Sure, I may have dropped a few photo frames or decor pieces in the process, but my gimpy hands were a part of the new me. Our personalities didn’t change, and I couldn’t get away with anything more than I did before. I wasn’t an inspiration. I was Kate: daughter, sister and organized perfectionist. We tried to keep with tradition — a family vacation each summer. Sometimes it was every other summer because of my surgeries, but we’d always squeeze in fun things during our school-age summers. One scorching day, we hopped on a plane for our first getaway to Europe. Cobblestone cities aren’t exactly made for wheelchairs, but we all wanted to go and knew we could make it work. Not going solely because I was sitting wasn’t an option. My mom was the expert planner and caretaker, and my dad and brother were the main brawn. Our real family moment? When we (rather unsafely) got me into a gondola in Venice. I remember everyone handing me off to the next in a rocking vessel, trying not to drop me in the water. Chair or not, no one was missing the oh-so-touristy water experience. Because really, why would we want to miss a relaxing ride that smells like sewage? Fast-forward to today, and we’re relatively the same family. A bigger number for sure — now my sister-in-law, three nieces and nephews, and my boyfriend are all in the mix. If I ever need an extra hand, they’ll help me out, but they won’t let me pawn off the things I can do. I’m sure everyone
Chair or not, no one was missing do not stay home - LIA Feb_pn_3tx.qxd 1/3/2013 11:57 PM the oh-so-touristy water experience. Because really, why would we want to miss a relaxing ride THERE’S NO EXCUSE that smells like sewage? had a reality check at the time of my accident, but that never stopped us from being us and getting back to what we loved to do. We’ve all grown up and my parents have gotten older. Brooks and my boyfriend do more of the lifting these days, and since I’m living on my own, my mom isn’t the main caregiver anymore. The new additions to the fam have gotten used all things chairrelated, adopting the same go-with-the-flow attitude ... like they had a choice! And as it should be, no one is, or ever will be, safe from our odd sense of humor and family antics that are uniquely ours. Brooks and I don’t have to fess up to my parents if we get into an argument. We settle fights with an “adult” hand gesture or two — mine being whatever my hands can put up. Lucky for me, his head-smacking days are somewhat over; now it’s him being the dad and settling disputes among HIS own kids. Kate Matelan is a retail copywriter and magazine freelancer in the greater Philadelphia area. She graduated from Bucknell University in 2010 with a B.S.B.A., focusing specifically on business management. Outside of writing, Kate loves experimenting in the kitchen, handcycling and, of course, being with her friends and family.
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[coverstory]
Friends and SCI/D: An Adjustment for All
D
uring my six years as an occupational therapist in a rehab hospital, I witnessed more life-changing events than most people do in a lifetime. When it came to addressing the needs of people who were recovering after a spinal cord injury, I felt like we therapists covered all of the bases. We taught them how to get in and out of a car. We taught them how to put on usual clothes. How to navigate a wheelchair through a kitchen and into a bathroom. We took them to malls and movie theatres, teaching them to open the doors and carry their own popcorn. We even had a social worker who specialized in post-SCI sexuality. Rarely, however, did we address friendship. Often young people with SCI made
16
By Erica Jacques with Alex Ghenis friends with one another during their stays. But when they came back to visit and I asked about their “rehab buddies,” I got only a shrug. What happened to these friendships after the hospital stay? I always imagined the people I worked with going home and returning to their former social life, but never considered the logistics. It got me thinking: Over time, did they become isolated from their former social crowd? Did they seek out others in wheelchairs? Did they go out of their way not to? *** Like other traumatic life events — divorce, the death of a close family member — SCI can teach you who your real friends are. Ann, who was paralyzed in a diving accident at the age of 14, found this out the hard way. When asked who
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
“the cast of characters changed and grew smaller, but the friendships around me grew stronger.” stuck around, she responded, “no one — they all left.” She made some new friends in rehab and kept up with them through email and Facebook. It wasn’t until she attended a camp for teens with disabilities where Ann met her first post-SCI friend, out of the rehab setting. “She was blind, and she loved [the band] Oasis,” she said. “The rest is history. She saw through to the real me, not my chair.” For a while they were inseparable. Like many teenage friends, however, they grew apart over time and rarely talk today.
Ben, who was also injured in a diving accident, learned that his best friend was truly his best friend. They were 16. Ben said of Ian: “My friendship with him intensified, whereas other friendships withered.” Ian learned to transfer and catheterize Ben. “The cast of characters changed and grew smaller,” said Ben, “but the friendships around me grew stronger.” As his interests and activities changed post-SCI, so did his circle of friends, but this didn’t seem to affect Ben. “People that stuck by me were ultimately
“some people realize that they almost lost you and want to be
no better or worse than the people who didn’t.” Sometimes Ben found that he was the one sticking around too long. “It’s scary to let go because you get both physical and emotional security from a relationship,” he said. “That means that I’ve held on to some relationships much longer than I should have.” Dax, a musician who was injured nearly ten years ago, learned that his musician friends were in it for the long haul. They rallied around him postSCI, organizing benefits to raise money for his expensive medical equipment. “Some people realize that they almost lost you and want to be closer as best they can,” he said. While he remained close with the music crowd, he lost touch with many close friends in the gay community, most of whom had been regulars at a particular bar for decades. “I found it difficult to hang out with those of our friends outside of that scene,” he said. “I wasn’t able to go out as often because my caregivers couldn’t stay out so late. And I found it difficult to hang out with those bar friends outside of that scene.” *** These stories surprised me. I knew that some people get abandoned. It was always heartbreaking. Like the family who stopped returning our calls from rehab, essentially leaving their newlyinjured daughter stranded. And the countless boyfriends and girlfriends who would gradually visit less and less, and eventually would never come back. But those are the blatant jerks. Others are less obvious, they simply go on living without you. Jill’s injury occurred over time from adolescence into young adulthood. A systemic disease caused several spine fractures and a hip fracture, permanently landing her in a wheelchair. Jill’s friends didn’t go anywhere. “I wouldn’t be friends with someone who would leave me just because of my chair,” she said. She hasn’t had trouble making friends since, either. “Most of my friends I’ve met since then often forget I’m in a wheelchair,” she said, “which is a double edged sword.”
Able-bodied friends: They stick around, but they don’t always get it. “Sometimes,” said Ann of her pals, “they unknowingly leave you out of things.” Jill echoed this sentiment. “On the one hand, I’m happy they see me like they see anyone else,” she said. “But on the other, it doesn’t help that they don’t think about the obvious. Like, I can’t climb stairs.” On the other side, there are those would-be friends who turn you off by going overboard. They want you to know they are aware of your wheelchair, going to great lengths to let you know it doesn’t bother them. “Sometimes people just try to be too politically correct,” said Ann. “It can be fun to teach them about disabled things. And they can physically help you. But sometimes, it’s just nice not to have to think about disability stuff for a little while.” “I get called ‘inspiring’ a lot,” said Jill, “which I guess is a good thing. But to me I’m just surviving.” Jill is used to being a spectacle, with her light-up power-assist wheels. People often ask about her chair, which can bother some of her able-bodied friends. “They have a lot of trouble with the staring. They get really upset about every injustice, most of which I’m used to. But you have to pick your battles.” To Jill, the people who are too politically correct or even plain rude are not the enemy. “Those are just people who need to be educated.” *** After hearing all of these stories, I wondered why these four individuals don’t have more friends who are in wheelchairs: friends who are used to the same challenges and annoyances, friends who’ve had similar experiences. Wouldn’t that save a lot of hassles? Jill’s response made me laugh out loud: “People in wheelchairs can also be just as annoying or as much of a jerk as anyone else,” she said. “Some I’ve met just don’t have very good social skills.” Other than being in a wheelchair and having that to talk about, Jill said she
Photo by WorthingtonVisuals.com
closer as best they can.”
C
over girls Jessica Larsen and Valentine Sargent know all about the challenges a spinal cord injury can pose, but they haven’t let them get in the way of their friendship. The two teens from Mesa, Ariz., have known each other since before Larsen, 15, was paralyzed in 2008, but grew closer following her injury. Sargent, 13, was heavily involved in fundraising to help Larsen and dedicated herself to supporting Larsen as she transitioned from rehab back to her everyday life. “It was kind of hard because I lost a lot of my friends,” says Larsen. “I had to pick out the real friends from the friends that just wanted me because I was popular.” “Now, we’re very close,” said Sargent. “We’re probably closer than most high school friends.” With a busy schedule that includes basketball, handcycling, high school and college classes, finding time to just hang out isn’t always easy, but Larsen and Sargent find ways. They’ve also learned to tune out the rumors and noise that often break up high school friendships. “There are a lot of stereotypes with people in wheelchairs that can be hard to get past,” said Larsen. “Some people don’t want to talk to you because they either think you’re depressed or you have a mental disability or something. You have to talk to them first, and they have to see that you’re in their range of ‘normal.’” Sargent knows that friends can play a key role in helping people with spinal cord injuries deal with those kinds of obstacles. “You should always stick by your friend and always support them,” says Sargent. “Just ignore everyone who spreads rumors and says stuff that’s not true.”
“i lost a lot of my friends. i had to pick out the real friends from the friends that just wanted me because i was popular.”
continued on next page SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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coverstory continued from previous page just hasn’t met many that share the same interests. “I also don’t like it when people make their disability their identity. They do things like refer to people who aren’t in wheelchairs as ‘temporarily abled people.’” “I wouldn’t wish my struggles on anyone,” she continued, “but I don’t want to be friends with people who wallow in self-pity or look down on others, whether they’re sitting or standing. I just want good friends.” Jill has several acquaintances with SCI, most of whom she has met in her apartment building. She does interact with them, and likes to learn new tips and tricks or talk about new pieces of equipment or medical technologies. For the most part, however, that’s where the conversation ends. Of the four, Ann has the most friends in wheelchairs. “They understand completely, and they don’t judge,” she said. “Other people don’t always get where you are coming from when you complain about disability stuff.” As a con, however, they can also assume a lot about you based on their own experiences. Sometimes they just come on too strong, which is off-putting. “They can be too buddy-buddy just because you went through the same thing,” Ann added. After his injury, Dax met someone in his hometown with an SCI. They hang out all the time, hitting the town and even helping out with support groups. Dax had some of the best advice for deal-
“the best thing is not to have any solid expectations from your friends. they are going through an adjustment as well.” ing with all types of obstacles. “The best thing is not to have any solid expectations from your friends,” he said. “They are going through an adjustment as well.” That’s a lesson each of us has to learn, SCI or not, and sometimes over and over again. It can be hard not to worry about finding friends who will understand your needs — both physical and emotional. Over time, Ben learned to seek a certain model of friendship, and to accept no less. “We’ll never truly know how able-bodied people will react to us, we can only guess.” But Ben doesn’t let that stop him. “What I have learned is I’m not doubting other people, I’m just doubting myself.” Wise friendship advice for anyone, wheelchair or not. 18
A Friend’s Perspective “it’s vital to understand the difference between pity, sympathy and empathy.” understand that they could just as easily be there themselves. They’re not dealing with a person in a wheelchair, they’re dealing with a person first and foremost. What do you hope people without spinal cord injuries take away from reading Spinal Map?
T
here are thousands of books and guides out there about living with SCI/D that have been written by the people with the injuries or disorders, but what about a guide to help all of their friends from the perspective of someone without an injury? When Rob Hope, a South African author and TV director, found himself facing that question with nowhere to turn he decided to take action. The result is Spinal Map, a 47-page book that aims to help nonwheelchair users understand the world of SCI and how they can better relate to people in wheelchairs. Hope got his education in SCI in the mid-1990s when he was working on a TV documentary that featured two quads, Andre and Jean. The group became friends and the experience forever changed Hope’s perspective. “Being with them, I just realized the sort of battles they had with relating to people in society in general,” Hope says. “I started realizing that people who weren’t injured had very little idea and were not prepared to think beyond their boundaries as to what it must be like to be in that situation.” Hope took some time from his job as a studio technical director to discuss his book and share some of the lessons he has learned about how to build successful friendships with people with spinal cord injuries. What was the genesis of Spinal Map? I did some documentaries with [Jean and Andre] and their whole mission was to get people out of their comfort zones, off of pavement and onto gravel and off-road situations. I just sort of slipped into a real straightforward friendship with them. I gathered that they had issues with the way people looked at them and treated them. That was when I realized that people who weren’t in wheelchairs needed a wake up call and needed to
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
My whole thing is to make people think and take stock of how they treat people in general and also people with differences. People who don’t know anything about SCI tend to assume that they know something and can profile people in wheelchairs. Hopefully my book can help people get to the point where they can look at someone in a chair and think, “OK, I can take a lot from him; I didn’t realize this and that.” Then they can go and find out more information and talk to more people in wheelchairs. I want readers to know that you can approach people in wheelchairs and talk to them, just like anyone else. If you could give one piece of advice to an individual who has a friend that recently suffered a spinal cord injury, what would it be? When you’re making your first visit you need to think really carefully about the person who was injured. Don’t talk about yourself, and let the person in the hospital who’s had the injury talk as much as they want to. Let them know that you’re willing to listen and learn. Do a bit of research before you go, don’t go in cold. Try and understand as much as you can, but don’t assume anything. People try and sympathize when they’re not in a position to. I think it’s vital to understand the difference between pity, sympathy and empathy. Looking back on all the time you’ve spent with wheelchair users, is there something you’ve learned that has surprised you? Once I stopped digging into their backgrounds, I was struck by what a different life they actually lived. There were so many things that they didn’t reveal and kept to themselves. The main thing was finding out how much you guys have to deal with in terms of pain, mobility and handling situations. What surprised me most was how tolerant and how sort of ingenious my friends were in getting around these things and how much they could actually put up with and actually overcome. We did an “adventure” tour of the east coast of South Africa where they did bridge jumping and river rafting. The amenities were pretty basic, but the way they worked around the accessibility obstacles blew me away.
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The author’s friends, Jean, left, and Andre schooled him on SCI.
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What was the most difficult aspect of maintaining your friendships with Jean and Andre and being able to relate to them as an able-bodied person? I think familiarity came up and hit me in the face a couple of times. I traveled with them up to Johannesburg. We flew up and then hired a car. Andre was doing the driving. His chair was in the back and I was in the passenger seat. We arrived at one place and I walked into the building and said, “Where’s Andre?” ... He was waiting in the car for me to get his chair! Sitting in the car we were pretty much on equal terms, and it completely escaped me because of our friendship and our relationship that he was in a wheelchair because sitting in the car, he wasn’t. Another time we were in a shopping center and there was a bit of a steep ramp. Andre started to push up it and I grabbed the handle of his wheelchair from behind. It took him by surprise and I realized then that it was actually probably a form of assault — it was too familiar — I had no right to do that. The intention was just to sort of help him up the ramp but I should have asked him. It still sort of haunts me that I actually did that and didn’t have the understanding to ask. It’s a very personal thing. That’s when I realized how much an extension of the person a wheelchair is.
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Any tips on how to ask those kinds of questions in an appropriate way? Spend time with a person and get to know how they feel. Discussion is also very vital. You just have to judge as you go. Don’t make assumptions and know when to ask questions. There are times when you have to realize that asking a question may not be good and vice versa. What have you learned, or gotten out of your friendships with people with spinal cord injuries? They drive home the advantages that I have not being in a chair. Being with people who are so much stronger than the average person who has had a fairly easy life — the mental strength and the ability to carry on — I find that very inspiring and humbling as well. Spinal Map is available in ebook form on Amazon.com, Smashwords.com and more for $9.99. SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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coverstory
A Different Type of Friend
O
n the surface, almost everything about the friendship between Scott and Melanie is what you would expect between two 30-somethings who have shared a house for a little over a year. They’ve bonded over countless hours of watching baseball (his favorite) and cartoons (her favorite). Melanie patiently listens to Scott rehearse his public speaking, and Scott has grown quite fond of Melanie’s mani/pedis. They’ve reached the point where they can silently enjoy each other’s company, but still love to play games and solve puzzles together. Since moving in, Melanie has become friends with all of Scott’s friends and Scott schedules his days so the two can have time to hang out. But there are a couple of things of things that differentiate Scott and Melanie’s friendship from the rest: the main ones being that Scott is a high-level quad and Melanie is a capuchin monkey. The series of events that led up to Scott
and Melanie’s relationship started back in early 2010. On the urging of a friend, Scott Fedor contacted Helping Hands, the Massachusetts-based organization that provides and trains the monkeys. Soon he found himself making a video explaining his interest. Then he was working to change Ohio laws that prohibited individuals from owning certain animals. Melanie arrived last September and the two took to each other quickly. “It’s a fascination that really hasn’t worn off yet,” he says. “I don’t know if it will because it’s still, ‘Hey, there’s a monkey living in my house!’ It’s something I never thought I’d be in a position to do.” *** As a C3 quad, Fedor has no use of his arms or hands. So when he began considering applying for a monkey helper he focused on the functional benefits of having an intelligent, trained set of hands to help him around the house. The Helping Hands website shows monkeys opening doors, picking things up, helping with grooming
and doing many other tasks a high-level quad can only dream of. In practice, those benefits have taken a backseat to the companionship Melanie provides. “When I look at her right now, I don’t look at her and say, OK I’m going to let her out and she’s going to help me. It’s more, I’m going to let her out and we’ll watch the baseball game, hang out for a little bit and laugh — and then if there is something I need assistance for, I can call on her for help. So I look at her as a companion first, and then maybe a little bit of a pet and then a helper.” That did not surprise Megan Talbert, the executive director of Helping Hands. “Developing a relationship with a monkey is unlike any other mammal. It’s not like having a cat or a dog, it’s a much deeper connection,” she says. “Monkeys don’t look at somebody and go, ‘Gosh, he’s not able to move his arms and he’s not able to talk.’ They look at that person and they say, ‘This person takes care of me and I want to take care of them in
In just over a year together, Scott Fedor and Melanie (the monkey) have developed a deep bond. Melanie loves to groom Scott (below) but is just as happy hanging out and playing with Scott.
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LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
By Ian Ruder
return.’ That’s something really special that the monkeys give to people.” Helping Hands has been matching monkeys with people with disabilities since 1979. Talbert has seen all types of relationships develop between monkeys and their owners. She says Fedor’s situation was somewhat unique, as he is one of the higher-injured recipients the program has worked with. Fedor was impressed by how quickly Melanie adapted to his situation. “It’s almost like she knows that my body is a little bit different than what she might have been trained for, and she respects that,” he says. “She’s not afraid of helping me or hurting me, but she also realizes my limitations, in terms of my ability to pet her or my ability to give her things.” While Melanie may not do as many tasks for Fedor as some monkeys, she still loves taking care of him. “I tell all my friends, I have the best monkey manicurist and the best nails in the neighborhood. I have no cuticles, my nails are absolutely spotless,” he says. “[Grooming] is a sign of affection in the wild. I don’t know if it’s because she is overly affectionate or she’s really comfortable with me.” When she is not grooming, Melanie loves to hang out, watch television or play games. “Hanging out with her just cracks me up,” Fedor says. Since Melanie figured out that her good deeds are often rewarded with food treats, she has worked to exploit the situation. Fedor tries to keep her on her feet by presenting her food rewards in the form of small challenges, like giving her a chopstick and placing peanut butter at the bottom of a bottle, or sealing oats in a pouch she must figure out how to open. “It entertains the hell out of me,” he says. “I just sit there watching her. When she can’t open it sometimes she’ll make her little cute noises and she’ll hand it to me. I’m like, I’m not going to help you, and you can tell she gets a little more excited/ frustrated. Then when she does figure it out she is really, really happy and she’ll stand on her two hind legs and run across the bed and holler.” *** Still, like any friendship there are hurdles. As smart as Melanie is, Fedor worries that he is unable to effectively convey how much he appreciates her devotion. “With as much time as she spends on me, I really
SFM* Looking for Companionship Age: 30 Sex: Female Looking for: Friendship/Companionship Likes: Mani/Pedis, Cartoons, Hanging out (in the sun if possible!), Puzzles Favorite foods: Apples, Peanut Butter, Anything sugary * Single Female Monkey
wish I had a way of somehow reciprocating that by petting her, grooming her or throwing her a ball,” he says. “I can’t do anything about that, though.” He also wishes there were fewer restraints on how and when the two can hang out. Fedor has around the clock assistance, but Melanie is only allowed out of the room her cage is in when her primary caregiver is present. That means there is only an eight-hour window each day for the two to roam the house. When you figure in work, therapy and other commitments, Scott and Melanie often only get two to four days a week of unfettered time together in the house. Fedor said he spends much of the rest of his time back in Melanie’s room. “She’s pretty content to kind of stay with her routine, have a few little treats and pretty much just hang out with me,” he says. If the weather is nice, Fedor will tie Melanie up with him outside and the two will soak up as much sun as possible. Usually, Melanie is confined to the house.
Talbert says introducing another caregiver Melanie has been for Melanie trained to do many might be a possibility in manual tasks Scott the future. While Scott and can not do, like washMelanie hit it off and figured ing his face (above). many things out quickly, Talbert reinforced the importance of time. “[The relationship] gets more complex and it does get deeper and stronger the longer they are together,” she says. “The people that really take their time and let things come stantly trying to figure out different chalnaturally usually do the best.” lenges to give her and things to do with *** With one year together under their belt, her.” He acknowledges the support system of friends and caregivers and how critical Fedor is eager to see how his relationship that is to maintaining his happiness and with Melanie evolves. “You never know well being. He likely never envisioned that what she’s going to do,” he says. “I’m con-
Van Brooks C5 RT300 Rider
a monkey would be a part of that system, but he is glad Melanie is. “She’s always there with me and she’ll accept me for whatever I’m doing, whatever mood I’m in,” he says. “She’s a constant and she puts up with the good, the bad and the ugly.”
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[solutions]
Ask Anything I recently sustained a spinal cord injury that makes it impossible to return to my work in construction. How can I support myself while I figure out a new job path? Spinal cord injuries can be especially debilitating, inhibiting people from working for weeks, months or even years. To try and help compensate for the financial burden that often accompanies serious injury, the Social Security Administration provides Social Security Disability benefits to individuals who can no longer work due to severe injury or illness. In order to
qualify for benefits, you must be disabled according to the SSA’s standards. The SSA regards you as disabled if you: • cannot do the work you did prior to becoming disabled; • have a physical or mental condition that prevents you from learning to do a new type of work; • have a physical or mental condition that has lasted or is expected to last at least one year or result in death; and • are not engaging in substantial gainful activity (defined as making $1,040 a month in 2013). If you are under 18, you’ll be evaluated on your ability to function at an age-appropriate level. The SSA considers a child to be disabled if he or she meets all of the following criteria: • The child cannot be engaging in substantial work activity (as determined by the SSA); • The child has a physical or mental condition that severely limits his or her activities; and • The condition is has lasted, or is expected last at least one year or result in death. 22
Benefit Programs
Application Preparation
If you meet the above criteria, then the Social Security Administration provides two different programs from which you could possibly receive benefits — Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). The first of these programs, Supplemental Security Income, is most likely the best option for a young adult. SSI is a needs-based program that was created to provide benefits to disabled individuals of all ages who earn very little income. In order to qualify for SSI, an applicant’s income cannot exceed very specific financial limits set by the SSA. Learn more about SSI financial eligibility here: www. socialsecurity.gov/ssi/text-eligibilityussi.htm. The second disability benefit program is called Social Security Disability Insurance. Eligibility for SSDI benefits is based on the applicant’s past employment and the amount of Social Security taxes that they have previously contributed. Although there are some exceptions, SSDI is usually not as helpful for young adults, as they do not have very much work experience. Learn more about SSDI eligibility here: www.disability-benefits-help.org/ ssdi/qualify-for-ssdi. Individuals who qualify for SSDI but still fall within the SSI limits may qualify for both types of benefits.
In my experience, the best way to ensure that you are awarded benefits is to prepare thoroughly. Research the two benefit programs and figure out which best applies to you. Do not waste your time applying to a program if you do not meet the technical eligibility requirements. You should enlist your doctor to help you compile all of your relevant medical records. He or she will know which records best demonstrate your diagnosis and limitations. Have family and friends write letters attesting to your capabilities and the changes that have occurred since becoming disabled. The best piece of advice that I have is to take your time with the application process — it will likely take a long time to complete. Rushing through will only cause you to make mistakes and be delayed further. Once you have reviewed the criteria and collected the necessary medical documentation, you are ready to begin the application process. You may choose to complete your application online or in person at an SSA office. It is important that you complete the forms with as much detail as possible. Any missing or incomplete information may cause your claim to be delayed or even denied. Children under the age of 18 who are applying for SSI benefits will be required to attend a disability interview. A parent or guardian should call the SSA as soon as possible to schedule this interview, as the next available appointment may not be for several months.
Medical Eligibility In order to qualify for either type of benefits, you must meet specific medical requirements. These requirements can be found in the SSA’s blue book — the official manual of disabling conditions and medical eligibility criteria. (Online: www.ssa.gov/disability/ professionals/bluebook/) For example, for a T7 spinal cord injury, you would need to meet blue book listing 1.04 — Disorders of the Spine. In this case, that means you must be able to prove that you have sustained an injury that has caused nerve root compression and causes pain, limited range of motion, dulled reflexes and muscle atrophy; or spinal arachnoiditis. Additionally, you must provide the SSA with significant medical documentation to support your claim.
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
Receiving a Decision Once you submit your application, it may be several months before you receive a decision. Within this time frame the SSA may contact you for additional information. Be sure to respond to these requests promptly in order to avoid any further delays in the approval process. The disability application process can be difficult and complicated. In fact, many initial applications are denied. If your initial claim is denied, do not hesitate to appeal. If your claim is denied and you have to appeal the SSA’s decision, it may be in your best interest to consult with a qualified attorney or advocate. You will not be required to pay your attorney unless you are awarded benefits and even then, the SSA has put limits on the amount that an attorney is allowed to charge. — Molly Clarke is a writer for the Social Security Disability Help Blog. For more information about the Social Security disability application process, visit Social Security Disability Help or contact Clarke at mac@ssd-help.org.
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23
solutions
Dating/Relating: Breaking Up
L
et me take you back to the boy band days — 2Gether’s catchy lyrics to be exact. They had an entire song about breaking up, most notably the line, “the hardest part of breaking up is getting back your stuff.” For us chair daters, the hardest part might not be reclaiming our belongings, but rather our independence. We all rely on our partners for different needs — some more than others — yet when a relationship ends, we have to transition back into our single, do-it-ourselves persona. Before you get on your soapbox (which we can’t physically step on), let me explain. Say you are dating someone for over a year; you’ve found a comfortable niche with one another and understand the ins and outs of daily life. Your main squeeze knows some of the tasks you may need help with: getting paper towels out of the top of a closet, helping you fill up your gas tank, opening those unbelievably difficult child-proof caps, buttoning up your blouse. The extra hand is helpful, but when it goes away, what do you do? How do you bounce back emotionally AND accomplish those tasks you can’t physically do? Take a friend of mine as more of a what-not-to-do example. She and her guy were molded together and when they ended things and went their separate ways, she was devastated. He moved out and she was left without any backup. Her friends lived nearby, but couldn’t pitch in all the time. After scrambling to find help and sacrificing her sanity, my friend got back on track. However, the stress and emotion of the breakup and the lack of assistance wore her down emotionally and physically. And we all know how that can wreak havoc on our medical well-being! Lucky for me, I had the outsider’s perspective on my friend’s breakup debacle, and I’ve taken some learned lessons to my own relationship. You see, my man is about to move in with me, and although we aren’t breaking up, the chance that it could happen has crossed my mind. When we’re under the same roof, I’m going to get more comfortable with him being there to lend a bulging bicep or two. How do I rely on him but make sure I can still do it all on my own or with the help of someone else? It’s a
24
Axel Grande
Zoë Amour
R
very fine line. I want him to be a part of elationships are wonderful, my life, but I still need to watch out for but sadly most don’t last myself. My solution: keep my aide comforever. And while breakups ing in once a week to stay in touch with are rough for anybody, they can be especially hard for folks with my routine AND give my man a break. SCI/D. We can easily question if some That way I have back up, yet I’m moving part of our disability led to things endforward in my relationship. ing, which can hurt our self-image and There’s no way of knowing what the confidence. Additionally, being alone future holds. People cheat, change, and can raise worries of never meeting sometimes just phase out of your life; someone else who’s down with SCI. breaking up, well, happens. In some So when you find yourself suddenly ways, you can’t plan for that nor do you single, it’s important to want to be thinking recognize your situathat way. However, tion and make a plan to before you take any how do i rely work through it. drastic moves, take After relationships on him but make note of the resources end, people often you realistically sure i can still ask themselves what DO have — friends, caused it. For folks do it all on my family, neighbors, with SCI, the questions etc. You don’t want to own or with the can go on for a while. throw yourself into a They touch everything help of someone relationship and cut from wondering if you else out the rest of your were a “burden” to relationships for a asking if your partner multitude of reasons, felt held back by your including breakup backup. SCI. These doubts can make you feel If you do find yourself in need of helpless and even a bit angry. help and your guy or gal is out of the Asking “why” is totally natural picture, ask! People will be there for post-breakup, as is ascribing blame. you in any way they can, but they But when you find yourself pointing might not know what you need befingers at your injury, you need to find hind the scenes. And most likely, they a way to come to terms with it all, won’t know what your partner helped come to peace with yourself, and move you with either. Now that you’re on forward without self-doubt dragging your own again, it’s up to you to be in you down. Now, the first rule is to complete control of your needs. Plus, frame the situation right. Don’t blame reclaiming your independence might be yourself or your SCI — instead, look the perfect segue to starting over and at the larger situation. Your disability isn’t something wrong with you that getting back into the dating game.
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
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ended your relationship; your partner just wasn’t ready to handle more complexity. It’s likely a number of circumstances led to things wrapping up. Rule two, let bygones be bygones. If you don’t know for sure that your SCI was a factor, let it be. And if you do think about it, use the experience to grow: Figure out if there was anything SCI-related that you can improve on in your next relationship, and make those changes with focus. If your partner got burned out helping around the house, plan for more shifts from personal attendants. If he or she seemed frustrated by not going on for bike rides, find some fun accessible activities that you can do with your next boo. All of this is also important for finding another love — because in its worst case, wondering about your SCI’s impact can even hurt your future relationships. My buddy Bryan said that one breakup a couple of years ago left him thinking his SCI was a factor, and he still has trouble letting it go. “I transferred that breakup onto all potential relationships,” he told me. “I never actually stopped wondering. I got better at ignoring it, but in the back of my mind it’s always still a question.” So in addition to finding peace today, you need to stick to rule three: Have hope for the future. Finding somebody who is comfortable with SCI can take a while. Let’s face it, our odds when it comes to dating are tougher than those of able-bodied folks. So when you finally get with someone who loves you as you are, it’s a huge relief. The flip side is that when things end, you feel that much more alone. Reflecting on the breakup two years ago, Bryan said, “At the time, it made me feel like I would never be loved again.” But he was loved again. And if things end with your boo, chances are you will be too. Nearly all of my friends with SCI who split with a partner ended up finding someone else. Bryan was single for six months after that breakup, then met someone who’s been with him ever since. And while finding your next boo might take some time and some healing, if you keep your head up things will find a way to work out.
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solutions
TechGuide: The Personal Tech of Earle Powdrell By Earle Powdrell
F
our years ago, a spinal stroke left me unable to move or communicate. I was locked in. Ironically, after years designing technology for the aerospace industry, I found myself dependent upon technology for my quality of life. I knew immediately I would need creative engineering if I was to restore my network of nerves and muscles. I went to work, and to this day I continue to restore the wiring of my mind. Just as In Aerospace, failure is not an option. In my daily life I have tried to prove that you can be locked in and enjoy a high quality life. I use technology to unlock my world and to unlock being locked in.
Tobii 12 Of all my technology, the Tobii 12 is my communicator — the window to my world. Without Tobii I would truly be locked in. Tobii uses an eye gaze system to help me type a sentence using my eyes in the most efficient manner to conserve my energy. I dwell on a letter for 1.2 seconds and the letter types onto the screen. The Tobii has cameras that read the light reflection in my eyes. Each day my wife or my caregiver turns Tobii on and from there I can check my email and respond. I use Tobii to communicate to my family and my therapists. I have been writing my story and many speeches. I am also using Tobii to write a children’s book for my three granddaughters and my grandson.
Permobil 500 My wheelchair, a Permobil 500, allows me to stand, tilt and reposition. 26
This wheelchair gives me mobility. It allows me to stand and meet the world again eye to eye and to attach my Tobii to the wheelchair. My Permobil is now connected to Tobii by wireless Bluetooth technology. This allows me to use switches and different manners of communication with more ease and more freedom. I drive my wheelchair using a head array that allows me independence to drive and to reposition myself. I have also used a chin control. The most rewarding part of having the Permobil 500 was being able to drive my youngest daughter, Lindsey down the aisle for her wedding in October 2011. That meant the world to me. It is a father’s duty to walk his daughter down the aisle. When we drove down the aisle I almost ran over her dress, but we made it to the altar. I was also able to dance with her at her reception.
Lokomat Prior to my stroke, I ran marathons and skied all my life. My biggest fear is losing all the strength I built up. To avoid that, I currently attend outpatient therapy three or four days a week at The Institute of Research and Rehabilitation at Memorial Hermann in the Texas Medical Center (TIRR). Through my therapy I have learned to hold my head, sit up, move my head and my hands. The Lokomat is an exoskeleton treadmill that helps me maintain what strength I have and regain any I have lost. It does so by reorganizing my sensations so that I can work with my
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
A spinal stroke left him “locked in,” but Earle Powdrell is doing everything he can to get unlocked. He uses the Tobii 12 communication system (top left) to control a computer and express his thoughts to those around him. When he is not working as an aerospace engineer, Powdrell is committed to rehab (top right, with wife Kathy, right), lobbying on behalf of people with disabilities (bottom left) or relaxing with family members (bottom right).
tone to control them. Lokomat reminds my mind where my legs are and what they do. I have also been working with researchers at TIRR on a speech therapy project using Lokomat. * * * As I lay there in ICU and in my early days at TIRR, only able to blink twice for yes and once for no, I knew: Failure was not an option. I knew that the engineering and aerospace technology was there to help me write,
communicate, stand and move — I just hoped that the therapist knew it. I was lucky I recovered at TIRR. This is where I got my life back. Technology gives me quality of life. Bringing attention to quality of life issues for the disabled is as important as my work with the space industry. Having a voice that may give hope means everything to me and my family. Just as in space, we are on the frontier of medical engineering opening a universe of possibilities for the disabled.
Access: Morgan’s Wonderland
By Frances J. Folsom
There’s no need to worry about accessibility if you take your kids to Morgan’s Wonderland in San Antonio. Every ride is fully wheelchair accessible.
M
organ Hartman loves her family, music, her dog and cat and butterflies. Morgan was born with severe cognitive delays. Despite the challenges that she has faced in her young life she has an ebullient personality giving hugs and smiles to everyone she meets. To her parents, Gordon and Maggie Hartman, Morgan is the light of their lives. Several years ago while watching Morgan attempting to interact with a group of children, Gordon had the germ of an idea: why not build a park specifically for people with physical and mental challenges. Being a businessman and philanthropist, Hartman put the wheels in motion. In 2007 Gordon and Maggie founded the Hartman Family Foundation, contributing $1 million of their own money to it. They went on to raise another $33 million in donations from the city of San Antonio, the state of Texas, charitable foundations, corporations and individuals. In 2009 Morgan’s Wonderland became a reality when the Hartmans purchased an abandoned quarry on the outskirts of San Antonio. They developed 25-acres of the former Longhorn Quarry for Morgan’s Wonderland, a specially outfitted theme park for those with physical and mental disabilities. According to Gordon, a local developer, “Morgan’s Wonderland is a special place where anyone can have fun, but it was created with special-needs individuals in mind. We’ve taken an abandoned rock quarry and transformed it into an outdoor recreation oasis for those with
cognitive and physical challenges. Unfortunately, countless children and adults with special needs do not have access to facilities that can help them fully enjoy outdoor recreation. We truly hope this park will change that.” To learn what was needed, the Hartman’s held public forums with parents and caregivers of people with disabilities and with representatives of the Wounded Warriors Program from Brook Army Medical Center. Saying that this is a happy place is putting it mildly; nothing here is painted institutional gray or hospital white. The bright colors are Morgan’s favorites: reds, oranges, yellows, blues and purples, with colorful butterfly logos everywhere. Chance Morgan, one of the country’s largest amusement ride companies, created the park’s major attractions: the Wonderland Express Train, the Old Time Carousel, the swings and the off-road adventure ride. Each ride is designed so that it is 100 percent wheelchair accessible. In June 2010, the park was awarded the United Cerebral Palsy Universal Accessibility Design Award. The Wonderland Express train has wide openings making it easier for people in wheelchairs to board it. The train chugs around a man-made lake where cannons spew water while guests sail remote controlled boats and fly-fish from the shore. Brightly colored chariots accommodate wheelchairs on the Old Time Carousel, and safety seats and harnesses are on the backs of the decorated horses, elephants, and hippos that go merrily up and down.
Everyone loves a swing, and here the swings are made so that wheelchairs can be secured onto special staging with tracks then be pushed like regular swings. The off-road adventure dune buggies, fitted to a secured track that goes up and down hills and dunes, are equipped so that even guests with severely limited mobility can drive them. The back of each buggy has platforms for wheelchairs. Designed to look like a life size mechanic’s garage, general store and TV station, the Sensory Village stimulates guests’ senses using colors, lights, sounds and textures. The Water Works is a place to get wet playing with water as it splashes out of pipes and tumbles over water falls. Park signs are in Braille, restrooms and food stands are ADA-compliant, there’s a first aid house and several picnic areas with tables designed for wheelchairs. Upon entering the park, guests are given a GPS Adventure Band, a radio frequency identification bracelet. Bright red station monitors are located throughout the park. Should someone become lost or confused, scanning the bracelet at one of the stations will let the guest know where their group is. The GPS can also be used to locate concessions, restrooms and attractions. Since the park opened in 2010 it has welcomed over 100,000 visitors. The fun here is made possible by the park’s
incredible staff, particularly the volunteers. In their bright purple shirts they are everywhere assisting guests. Whether it be pushing swings or taking fish off of hooks, it’s all done with a smile.
If You Go: Morgan’s Wonderland, 5223 David Edwards Dr., San Antonio, TX, 210-6373434. www.morganswonderland.com Admission for anyone with special needs is free; $15 for family members, friends and caregivers. The park is easily reached from downtown San Antonio by VIA Metropolitan Transit www.viainfo.net, which offers accessible buses.
More Playgrounds To find accessible playgrounds in your neck of the woods, check out NPR’s new database, “Playgrounds for Everyone.” The community-edited guide has detailed information on the accessibility features of over 1,300 playgrounds nationwide. The site allows and encourages users to add to the database by uploading information about parks that are not currently included. If you are unsure about how to rate different accessibility items, the site even has pictures and information to help you. Find it here: http://apps. npr.org/playgrounds/
SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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solutions
MS Life
By Josie Byzek
best strategies
Webinar on Preventing Falls In late September, United Spinal held a webinar on “Preventing Falls in Adults with Disabilities and Chronic Health Conditions: What Works,” which focused on factors that put women at risk for falling. What set this Webinar apart from other, similar offerings is that this one delved into both the science behind falls, as well as some anecdotal stories and practical tips. Here are a few facts pulled from the Webinar’s section dealing solely with MS: • Over 50 percent of people with MS reported a fall in the past six months. • More men with MS fall than women with MS. • Many who fall have never, or only occasionally, used a wheelchair. And here are some tips that have been shown to reduce falls: • Exercise programs and Tai Chi • Having a pharmacist review your meds
• Tell your doctor that you’ve fallen • Work with an occupational therapist • Get your vision checked If you’re a wheelchair user, here are a few extra suggestions: • Remember you’re the expert on how you transfer and make sure everyone knows that. • Lock your chair before you transfer. • Turn off your power chair or scooter when you’re not using it. • Don’t remove parts from your wheelchair, such as the anti-tip bars. If you have questions about falling and MS, or want to be connected to resources, contact Spinal Cord Central at www.unitedspinal.org/ask-us/ or call 800.962.9629. “Preventing Falls in Adults with Disabilities and Chronic Health Conditions: What Works” is archived at www.unitedspinal.org/webinar-archive/.
med alternatives
General Exercise Resource For good, general information on exercise and multiple sclerosis, start at the website for the National Center on Health, Physical Activity and Disability. In the search engine, enter “multiple sclerosis and exercise,” and over 40 links pop up that take you to videos of actual easy exercises to research studies on everything from aerobic exercise and MS (not as ridiculous as it sounds) to the tamer resistance training. The most useful and practical feature of NCHPAD is its free 14-week Web-based health program. It shows you how to exercise, step-by-step, at your own pace. Give it a try at www.ncpad.org.
Consider Yoga When thinking about starting an exercise program, consider yoga. It stretches muscles, focuses on breathing, and uses deliberate, slow motions, many of which can be done from a sitting position. Also, it is relaxing and can lower stress. If you are able to walk, then you can probably participate in most yoga classes, such as those that might be offered by local YMCAs. If you are a wheelchair user or are unsure about your abilities, then you might want to find a local practitioner who is familiar with MS, which you can do through your local MS Society chapter. Another option may be to practice yoga in the privacy of your own home. One resource produced specifically for people with MS is Body, Mind & Soul: Adapted Yoga Exercises, a DVD produced by the Hamilton MS Society Chapter in Canada. For more info, contact Dawn Ludwig at 905/527-7874, ext. 10. • National MS Society, 800.344.4867; www.nmss.org
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research news
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
How does MS affect you? You may be able to contribute your experience to the study below.
Clinical Trials Recruiting Here are two clinical trials looking for participants in or near Pennsylvania or Ohio. First, the Penn State Multiple Sclerosis Project is looking for people between the ages of 25 and 65 for a study on the effects of neuropsychological, emotional, social and physical factors in people with MS. Participants will be given a background interview, get an MRI, take neuropsychological tests and fill out lots of questionnaires. All together it ought to take about four to five hours and participants will receive a personal neuropsych eval and be paid for their time. For more info, contact Dr. Peter Arnett, Penn State MS Project, 814.865.5578 or paa6@psu.edu. Second, Cleveland Clinic Research is conducting a study on strategies to promote physical activity and reducing fatigue in people with progressive types of MS. To be eligible, people must be between 18 and 65, able to walk 25 feet with or without a cane, not be physically active, and not have any cardiopulmonary conditions. Participants will fill out questionnaires, and engage in several group as well as one-to-one phone calls over a 24-week period. Some participants may be asked to engage in a walking program. All participants will be given personal advice on exercise from experts. For more info, contact the Cleveland Clinic Research office at 216.445.1203. Both studies are funded by the National MS Society.
Why Upgrade?
MS Perspectives
B
ack in the days of scripted television, The Love Boat was the place to see Hollywood bygones, one-trick ponies ery word that he or and “where-are-theyhis family (or heaven nows.” Enter unscripted forbid, those comshows (which are anymentators!) say about thing but real, though multiple sclerosis be dubbed “reality TV”) spot-on. If it goes and we find a second well, millions will learn verse, same as the first. about our disease. This time we swap Conversely, one misa cruise ship for the jack osbourne dancing placed sentence and dance floor and voilà, with ms sparks heated those same millions Dancing With the Stars. conversation will be misinformed. Though dancing We all know that MS is one of the things Trevis Gleason is a personal journey. mentioned when I once asked what we Every case is different, would do on the day after a cure for MS, we everyone’s coping is different, and we all count don’t talk much about high heels, spangles on the kindness of others in the search for a and dips (other than the old MS two-step). cure. Will this kind of exposure be good or bad Social media lit up, however, when it ABC an- for us on the micro and the macro levels? nounced that our fellow on the MS trail, Jack That, I believe, is yet to be played out. Osbourne, was to be on the upcoming season The one thing of which I am certain, howof the ballroom program. ever, is that I for one will not stand for voices In my reading — and there was a lot to in our community lashing out because Jack read — most people in our community are isn’t being “good enough” as a spokesman excited and hopeful that Osbourne, who anfor MS. Especially the voices who blurt out, nounced to People magazine last year that he loud and strong, that he is bound to do one was living with MS, will be a good advocate damned thing for the cause … yet fail to do for people like us. anything for the cause itself. That’s what seemed to be the raspberry No, we do not all have television shows or seed in a lot of wisdom teeth: “Like us.” famous families or access to millions, thouEven if I take out the most bitter of the sands or even hundreds. We can, however, comments I read, still there is concern that all do something. In fact, anyone casting someone turning, spinning, lifting and shakstones at the way in which Jack Osbourne ing, all under the very hot lights of a televiand his family are attending to their advocasion set, will make people think we could all cy had better have a list of how they advance do that. Many feel that MS is too misunderour cause. If not, I call bullshit. stood to have such mixed signals out there What are your thoughts on the way that week after week. celebrities with MS (or any other condition) Genuine, and not unfounded, concern for handle their fight — publicly or otherwise? Osbourne’s health was also voiced. The stress of a weekly show, strain of the long hours of physical practice required and, again with the heat … I argue that there will also be a lot of pressure from the MS community that ev-
This article first appeared in Trevis Gleason’s column on www.everydayhealth.com, “Life With Multiple Sclerosis.”
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solutions
Travel: Sweden: Beauty, Equality and Clean Eats
A
s the co-owner of inclusive stock photo and travel websites, and with free travel provided through my husband’s work, I have been fortunate to experience many of the world’s most and least accessible destinations. Of all the places I have visited, Sweden remains my favorite, thanks to its forward-thinking approach to inclusivity for all, its respectful and friendly citizens, its beauty and its many unique attractions. The best place to start a tour of Sweden is the capital, Stockholm. I stayed at The Rica Hotel, as it was centrally located and had a free breakfast buffet to fuel a day of sightseeing. With a beautiful open air market a few pushes away, and restaurants, shopping and great public artwork all around, there is plenty to keep you busy. Before you do anything I recommend you get your bearings by taking a sightseeing boat ride. Under the Bridges Boat Tour has an accessible boat and the tour is a great way to learn about the layout of the land The author had no trouble and the history of Sweden. finding stunning scenic A must-see is Gamla Stan, a 13th century original town views wherever she rolled in Stockholm. with much to explore, including medieval alleyways and archaic architecture. As you might expect, the old town is filled with cobblestone streets and steps. With a strong husband, a young daughter and a Freewheel attachment, I managed, but most businesses and many areas would not be accessible without portable ramps or much assistance. The Nobel Museum, quaint town squares, great shopping, restaurants, the Stockholm Cathedral and the Royal Palace make this section of Stockholm worth the effort for any tourist who can manage it. An electric wheelchair would be useful here — the only issue would be then getting into the facilities, as Cap a long day of sightseeing with there are no ramps. On the flip some cocktails at the Absolut Icebar in side, many of the city’s treasured the lobby of the Nordic Sea Hotel. museums are accessible, including the National Museum, The Royal Coin Cabinet at the base of The Grand Hotel, next to the Royal Place on the Harthe Royal Palace, the Vasa and the bor is a must-see. If nothing Moderna Museet. else just to have the fancy A wheelchair is a ticket to the porters help you use the lift (bottom left) and visit the front of the line at the Vasa Muelegant bar where you can seum, a 17th Century warship that sit and have tea or a drink sank on its maiden voyage. They overlooking the harbor. found it and raised it 333 years This famous sculpture of St. later. Now you can view how it George and the Dragon is was preserved and restored with one of many historic sculptures to be found in Gamla all its intricate carvings. Stan, the well-preserved There is no better way to cap a medieval city center of long day of being a tourist than the 13th century Stockholm (bottom right). Absolut Icebar. At -5 degrees all year round, the bar and surroundings
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LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
All photos: PhotoAbility.net
By Deborah Davis are made of ice. It was fully accessible and even with my lack of temperature control, I was able spend enough time to taste two of the famous flavored ice-cold vodkas. The bar is in the lobby of the Nordic Sea Hotel by Stockholm Central Station. The food, while expensive, is one of the most pleasurable things about Sweden. Fresh, no hormones, no chemicals, farm raised food is an expectation of these savvy Europeans who have regulated the industry intelligently. Ethnic restaurants abound, as do vegan and vegetarian ones, thanks to the high percentage of the population who follow those diets. For a fun, fancy night out, try Sturehof. The food, service and atmosphere are hip, and the bathroom is perfectly accessible. Getting around is easy thanks to the accessible, clean subways. Many are adorned with beautiful public art on walls and ceilings. They are easy to navigate with no drama and no broken elevators or lifts. Hop a ride to Södermalm, a large island south of the main city. It was once considered working class, but is now a Bohemian part of town that has hip restaurants and boutiques. Whether you have kids or not, Gröna Lund Amusement Park and Skansen, the first open air museum and zoo in Sweden, are both worth checking out. At Gröna Lund you can ride accessible rollercoasters or simply relax over beers at the beer garden and learn the value of a shot of Jägermeister. Skansen offers the opportunity to stroll through five centuries of Swedish history, from north to south, with a real sense of the past all around in the historical buildings and dwellings, peopled by characters in period dress. Some 75 different species and breeds of Scandinavian animals are represented at Skansen — more than anywhere else. There are traditional breeds of cows, pigs, horses, sheep and goats, geese, hens and ducks. And there are wild animals such as brown bears, wolves, seals, lynx, wolverines and elk. Deborah Davis is the owner of PhotoAbility.net and TravAbility.travel.
Marketplace Sigmedics, The ParaStep System- Electrical Stimulation System enables unbraced standing and short distance walking. (Function of sit to stand.) Works by controlled electrical pulses through surface-applied electrodes to nerves and muscles. Top of the line for rehab plus work out. Bought new for almost $13,000, will sell for $10,000 or best offer (will negotiate). Call Blair at 603.359.5364 or email blairstras@yahoo.com. (Hanover, NH) Never used 2011 Pride Mobility Quantum Q6 Edge with tilt-in-space, 16’’ J3 back, deskstyle armrests, traditional foot rests, batterycharger, blue base. Local pickup or buyer pays shipping costs. Located in Central New Jersey. Asking $5,000. Contact Laura by email at wheels355@Verizon.net 2000 Luxury Beaver Patriot Motor Home. Immaculate - REALLY LOADED! Only 84,000 miles! $80,000. 40 ft., 2 slide outs, Caterpillar Diesel, Pusher 3126B Truck Engine, Super Arm, Sat Dish, Tempurpedic Queen Master (Sleeps 4), Roll-In Shower/HC Bathroom, Tracking System from Bed to Driver Seat, A.C, A.M/F.M./C.D., Hand Controls, Vegia Tire Pressure Monitoring System, Digi-Pad. Call or email William Bussear for additional info: 951.218.4023; wlb21666@hotmail.com Several Items for Sale, pick-up only: Power wheelchair - Invacare Storm TD X 5, power recline, 24-volt battery charger, special air cushion, New $18,000. Will sell for $6,400. • Power wheelchair - Quantum 614, power recline, additional rear caregiver joystick, 24volt charger, special air cushion, New $18,000. Will sell for $5,800. • 42” Electric bariatric bed model # 15300 - Drive Medical Design & Manufacturing, HS-3 controller, raise/lower, various positions, 2 years old – like new. Retails for $3,840. Will sell for $2,200. • OTHER ITEMS AVAILABLE, including a conversion van. Contact Mary Ann Mottes or Gerald D. Mottes for complete list. 906.346.9282 or 906.3620675. Pick up only. (Gwinn, MI) Law Firm of James E. Bahamonde, P.C. The law firm enforces claims of housing discrimination, accessibility violations, service-dog discrimination, and failure to reasonable accommodations. Free consultation. www.CivilRightsNY. com; NYC telephone 646.290.8258; Long Island telephone 516.783.9662; se habla español
LBI (Surf City, NJ) Rental – Accessible, 2 bedrooms but sleeps 6. Roll-in shower, accessible ramp, washer and dryer and parking. Convenient to restaurants, shopping and only 2 blocks away from the ocean and bay. $1,500 per week. Call Agnes at 917.848.8249. 24-ft Portable wood Wheelchair ramp. The ramp is only about a year and a half old. It is built into three 8-ft sections with a 4-ft x 4-ft flat platform for the top. All the pieces attach with no hardware. The ramp has removable wood railings. I got it for a rental house but no longer need it. I paid a little over $3,500 for the ramp so I am looking to get around $2,000 OBO for it. I can deliver it and help install it if needed. I am located in Walden, NY. Please contact me at 845.800.6043 or email me at Tyler.ryan42@yahoo.com for pictures and more information. Freedom Factory Revolution Pro Comp Monoski — Dark Blue. This ski is only 2 seasons old and has only 7 days to the mountain on it. I upgraded to a KGB so I no longer need this ski. I bought it new and have been the only owner. It is in great shape. The shock is solid and feels like new. It comes with the frame but no bucket, as the bucket is custom fit and I used it for the new ski. I would like to get around $2,000 for the Rev Pro. I would rather it be local pick up but can ship it if you are interested. Please Call me at 845.800.6403 or email me at Tyler.ryan42@ yahoo.com for more information or pictures. I am also open to trades. (Walden, NY) Job opportunities available for Alternative Energy Projects. Mostly looking for grant writers. Field is open – several new technologies available. Contact Paul at P.O. Box 162 Proctorsville, VT 05153. Completely accessible home for sale near Albany, NY. 3/2 Open Floor Plan. $185,000. For more information and photos please email mrschantz@aol.com Jump start your sex life and get expert advice at medicalvibrator.com or call 714.649.9284. We also specialize in fertility and incontinence. Life in Action accepts free person-to-person ads from members and paid ads from all others. Call 718.803.3782, ext. 7253.
SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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solutions
NSCIA Hospital Members 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 SCI/D. 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. ARIZONA Healthsouth East Valley Rehabilitation Hospital Mesa, AZ, 480.567.0350 St. Joseph’s Hospital and Medical Center, Phoenix, AZ 602.406.3000 CALIFORNIA CareMeridian, Fresno, CA 559.431.8594 Casa Colina Centers for Rehabilitation, Pomona, CA, 866.724.4127, ext. 3900 Leon S. Peters Rehabilitation Center, Fresno, CA, 559.459.6000
Memorial Medical Center Springfield, IL, 217.788.3302
Mount Sinai Rehabilitation Hospital Hartford, CT 860.714.3500
Rehabilitation Institute of Chicago - Midwest Regional Spinal Cord Injury Care System (MRSCIS) Chicago, IL, 800.354.7342
DISTRICT OF COLUMBIA Medstar National Rehabilitation Hospital Washington, D.C. 202.877.1000
INDIANA Rehabilitation Hospital of Indiana, Indianapolis, IN, 317.329.2000
FLORIDA Brooks Rehabilitation Hospital Jacksonville, FL, 904.345.7600 Pinecrest Rehabilitation Hospital Delray Beach, FL, 561.498.4440
KENTUCKY Cardinal Hill Rehabilitation Hospital, Lexington, KY, 859.254.5701
Northridge Hospital Medical Center, Center for Rehabilitation Medicine Northridge, CA, 818.885.8500
GEORGIA Central Georgia Rehab Hospital Macon, GA 478.201.6500
Sharp Rehabilitation Center San Diego, CA, 858.939.6709
Emory University Hospital Center for Rehabilitation Atlanta, GA, 404.712.7593
St. Jude Centers for Rehabilitation and Wellness, Fullerton, CA, 714.992.3000 COLORADO Craig Hospital, Englewood, CO, 303.789.8800 CONNECTICUT Gaylord Specialty Healthcare / Spinal Cord Injury Program, Wallingford, CT, 203.284.2800
Frazier Rehab Institute - Spinal Cord Medicine Louisville, KY, 502.582.7490
Shepherd Center - Spinal Cord Injury Services, Atlanta, GA, 404.352.2020 ILLINOIS Edward Hines Jr. VA Hospital Hines, IL, 708.202.8387
Touro Rehabilitation Center New Orleans, LA, 504.897.8560 MARYLAND Adventist Rehabilitation Hospital of Maryland, Rockville, MD, 240.864.6132
Marianjoy Hospital Wheaton, IL, 800.462.2366
Kennedy Kreiger Institute Baltimore, MD, 888.554.2080
SPINAL NETWORK
Kernan Hospital Spinal Cord Injury Support Group, Baltimore, MD, 410.448.6307
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LOUISIANA The Gilda Trautman Newman Rehabilitation Center New Orleans, LA, 504.899.9511
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
MASSACHUSSETTS Mercy Medical Center Weldon Rehabilitation Hospital, Springfield, MA, 413.748.6800
MICHIGAN DMC Rehabilitation Institute of Michigan, Detroit, MI 313.745.1055 Mary Freebed Rehabilitation Hospital, Grand Rapids, MI, 800.528.8989 MINNESOTA St. Cloud Rehabilitation Hospital - Inpatient Rehabilitation, St. Cloud, MN, 320.229.4922 MISSISSIPPI Methodist Rehabilitation Center/SCI Program Jackson, MS, 601.981.2611 MISSOURI SSM Rehabilitation Hospital Bridgeton, MO 314.768.5200 The Rehabilitation Institute of Kansas City Kansas City, MO 816.751.7812 NEBRASKA Immanuel Rehabilitation Omaha, NE 402.572.2295
Madonna Rehabilitation Hospital Spinal Cord Injury Rehabilitation Program, Lincoln, NE, 800.676.5448, 402.489.7102 QLI Omaha, NE, 402.573.3700 NEW JERSEY Bacharach Institute for Rehabilitation, Pomona, NJ, 609.748.5480 Kessler Institute for Rehabilitation - Northern New Jersey SCI System West Orange, NJ, 973.252.6367
Summa Rehabilitation Hospital Akron, OH, 330.572.7300 OKLAHOMA Integris Jim Thorpe Rehabilitation Network, Oklahoma City, OK, 405.951.2277 OREGON Legacy Rehab Medical Center Portland, OR, 503.413.7151 OHSU Rehabilitation Portland, OR, 503.494.8311
NEW MEXICO HealthSouth Rehabilitation Hospital Spinal Cord Injury Program Albuquerque, NM 505.344.9478
PENNSYLVANIA Allied Services Rehabilitation Hospital Scranton, PA, 570.348.1360
Lovelace Rehabilitation Hospital Albuquerque, NM, 505.727.4700
Aristacare at Meadow Springs Plymouth Meeting, PA, 610.279.7300
NEW YORK Burke Rehabilitation Hospital Spinal Cord Injury Program White Plains, NY, 914.597.2500 Helen Hayes Hospital West Haverstraw, NY, 845.786.4000 James J. Peters VA Medical Center Bronx, NY, 718.584.9000 Mount Sinai Medical Center New York, NY, 212.241.6500 NYU Langone Medical Center Rusk Rehabilitation New York, NY 212-263-6012 St. Charles Hospital Rehabilitation Center, Port Jefferson, NY, 631.474.6011 Strong Memorial Hospital of the University of Rochester Rochester, NY, 585.275.2100 Sunnyview Rehabilitation Hospital Schenectady, NY, 518.382.4560 NORTH CAROLINA Carolinas Rehabilitation Charlotte, NC, 704.355.3558 Cone Inpatient Rehabilitation Center, Greensboro, NC, 336.832.8153 Vidant Medical Center Greenville, NC, 252.975.4100 Wake Forest University Baptist Medical Center/SCI Rehabilitation Program, Winston-Salem, NC 336.716.2011 WakeMed Rehab Hospital Raleigh, NC, 919.350.8861 OHIO MetroHealth Rehabilitation Institute of Ohio, Cleveland, OH, 216.778.3483 SCI Program of the Rehabilitation Institute of Ohio at Miami Valley Hospital, Dayton, OH, 937.208.8000
HealthSouth Harmarville Rehabilitation Hospital Pittsburgh, PA 412.828.1300 Moss Rehabilitation Hospital Elkins Park, PA, 215.663.6000 The Children’s Institute Pittsburgh, PA, 412.420.2400 Thomas Jefferson University Hospital, Philadelphia, PA, 215.955.6579 UPMC Rehabilitation Institute at Mercy, Pittsburgh, PA, 800.533.8762 SOUTH CAROLINA HealthSouth Rehabilitation Hospital of Charleston Charleston, SC 843.820.7777 Roger C. Peace Rehabilitation Hospital Greenville, SC, 864.455.3779 TENNESSEE Memphis VA Medical Center Spinal Cord Injury / Disorders Memphis, TN 901.577.7373 Patricia Neal Rehabilitation Center, Knoxville, TN, 865.541.3600 Vanderbilt Stallworth Rehabilitation Hospital Nashville, TN, 615.963.4051
Warm Springs Rehabilitation Hospital of San Antonio San Antonio, TX, 210.616.0100 UTAH University of Utah Health Care Rehabilitation Center Salt Lake City, UT, 801.585.2800 VIRGINIA Inova Rehabilitation Center at Mount Vernon Hospital Alexandria, VA, 703.664.7924 UVA - HealthSouth Rehabilitation Hospital, Charlottesville, VA, 434.924.0211 Virginia Commonwealth University Medical Center Richmond, VA, 804.828.0861 Woodrow Wilson Rehabilitation Fishersville, VA 540.332.7000
WASHINGTON Northwest Regional Spinal Cord Injury System - UW Medicine, Seattle, WA, 206.221.7390 WISCONSIN Spinal Cord Injury Center at Froedtert and The Medical College of Wisconsin, Milwaukee, WI 414.805.3000 * * *
Organizational Members Center of Recovery & Exercise Longwood, FL 321.418.3050 Florida SCI Resource Center Tampa, FL, 813.844.4711 Journey Forward Canton, MA 781.828.3233 Precision Rehabilitation Long Beach, CA, 562.988.3570 Project Walk - SCI Recovery Center Carlsbad, CA, 760.431.9789 Project Walk - Atlanta Alpharetta, GA, 770.722.4239
The Methodist Hospital Houston, TX 713.394.6000
Project Walk - Dallas Dallas, TX, 972.386.0701
Texas Rehabilitation Hospital Fort Worth, TX, 817.820.3400 TIRR Memorial Hermann (The Institute for Rehabilitation and Research), Houston, TX, 713.799.5000
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!
Platinum
The Comfort Company www.comfortcompany.com • 800.564.9248
Permobil www.permobil.com • 800.736.0925
VERMONT Fletcher Allen Rehabilitation Colchester, VT, 802.847.6900
TEXAS HealthSouth Rehabilitation Institute of San Antonio San Antonio, TX 210.691.0737
Texas Health Harris Methodist Fort Worth, TX, 817.250.2029
NSCIA Business Members
Project Walk - Austin Austin, TX, 512.719.4300
Project Walk - Kansas City Overland Park, KS. 913.451.1500 Project Walk - Orlando Sanford, FL, 407.571.9974 Push to Walk Riverdale, NJ 862.200.5848 The Recovery Project Livonia, MI, 855.877.1944
Redman www.redmanpowerchair.com • 800.727.6684
Silver Avery Biomedical www.averybiomedical.com 631.864.1600 Coloplast www.us.coloplast.com 866.726.7872 Go! Mobility www.goesanywhere.com 866.363.8244
Bronze United Seating and Mobility www.unitedseating.com 800-500-9150
Supporter Adapta Medical Advisacare Home Health Care Burke, Harvey & Frankowski, LLC Clean Air Car Service & Parking Corporation Surehands Lift & Care Systems Synapse Biomedical For more information on how you too can support NSCIA and become a business member, please contact Amy Blackmore at ablackmore@ unitedspinal.org or 718.803.3782, ext. 7252.
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. To see a complete listing of NSCIA business members, visit http://www.spinalcord.org/resourcecenter/nscia-business-members/
SEPTEMBER/OCTOBER 2013 • LIFE IN ACTION
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Calendar of Webinars and Events Increasing Access to Accessible Housing for Disabled Veterans Time: 3 p.m. to 4 p.m. EST Speaker: Heather Ansley, Esq., MSW, Vice President of VetsFirst, a program of United Spinal Association Program Overview: For many disabled veterans, the lack of affordable, accessible housing is a barrier to living independently in the community. The Department of Veterans Affairs has programs available to help veterans who need their homes modified due to a disability related
Kids Sports Spectacular Offers Youngsters New Outlook on Their Abilities
AU HEL G D 17
NOVEMBER 7 [Free Webinar]
Maximus Wong, an enthusiastic and energetic 5-year-old from Flushing, N.Y., doesn’t let using a wheelchair get in the way of his love of sports. Three years ago, Max underwent surgery to remove a spinal tumor that dramatically affected his ability to walk. Ever since, Max’s dad, Elijah, and the entire Wong family have made it their mission to seek out opportunities for him to be active despite these new challenges. Last year, they were thrilled to find out about United Spinal Association’s Kids Sports Spectacular (KSS), an annual event held at the Wells Fargo Center, in Philadelphia, Pa., that brings together kids with disabilities and their families
to their military service. This webinar will take a closer look at the VA programs that are available to assist veterans with accessible housing. It will also focus on efforts that VetsFirst is taking in Washington to provide additional assistance for disabled veterans who need assistance in adapting their homes, including those who may not currently be eligible for VA assistance. Register: spinalcord.org/webinar-archive
NOVEMBER 19 [Free Webinar] Non-Service-Connected Disability Pension Benefits Time: 3 p.m. to 4 p.m. EST Speaker: Christine Golden, National Service Director for VetsFirst, a program of United Spinal Association Program Overview: Many veterans who have disabilities not related to their military service want to know what monetary benefits are available to them from the U.S. Department of Veterans Affairs. The good news is that VA provides a pension benefit to wartime veterans who are age 65 or older and low-income, or if under 65 are permanently and totally disabled. In this webinar, we will focus on the basic eligibility criteria for VA pension and explain step-by-step how to apply for this monetary benefit. Register: spinalcord.org/webinar-archive 34
for a fun-filled day of adaptive sports clinics, including basketball, tennis, soccer, baseball and handcycling. It was just what Max needed to move forward. The Wong family — including Max’s grandparents — made the trek from Queens to attend KSS for the first time in 2012, hoping it would leave a lasting impression on Max. The impact was beyond their expectations. “It has led to many great opportunities for him. We’re very excited to be back here,” Elijah said upon returning for this year’s KSS, which took place on Saturday, August 17. Since attending KSS, Max has joined adaptive sled hockey and tennis clubs in his local community, driven by the camaraderie of teammates and coaches that have accepted him with open arms and amazing encouragement. “It was clear to me that Max was extremely eager to learn new skills and improve at everything he did,” says Lindell Lowe, a West Philadelphia native and KSS instructor for the past five years who was born with spina bifida.
LIFE IN ACTION • SEPTEMBER/OCTOBER 2013
“To witness his confidence soar and all his accomplishments in only a year is what makes KSS so rewarding to be a part of. I wouldn’t miss this event for the world.” Like many instructors involved with KSS, Lowe plays a big role in helping participants connect with local recreational opportunities so they can continue on their path to success, not just in sports but in life. “For most attendees, it’s all about keeping in touch and helping each other find new outlets. KSS provides the seeds to continue to grow,” says Marlene Perkins, KSS coordinator and United Spinal’s vice president of corporate and community relations. Max was just was one of many returning participants who brought troops of family members and supporters, eager to cheer them on. “There are many familiar smiles here today and that’s always encouraging,” adds Perkins. During her keynote address, U.S. Paralympian and Ms. Wheelchair New Jersey 2013 Margaret Redden, who contracted polio at a young age in her homeland of India, reiterated the message of this year’s KSS: with determination and perseverance — anything is possible. “Paralysis hasn’t stopped me from achieving,” says Redden. United Spinal is hopeful that KSS opens the first door to a successful future for many of these youngsters. — Tom Scott
BE SEEN, BE SAFE. Collisions between motor vehicles and wheelchairs lead to over 300 wheelchair user deaths each year.*
O U R CO M M ITM EN T
TO SAFETY Comfort Company backrests and cushions feature reflective piping to ensure we are doing our part to promote safety and protect the wheelchair user. Reflective piping has the ability to return a large proportion of light directly back to the source it came from, allowing it to be seen from up to 500 feet away in low light conditions. Make sure you are visible. BE SEEN, BE SAFE.
*National Highway Traffic Safety Administration. Publication. U.S. Department of Transportation, Sept. 2007. Web. <http://stnw.nhtsa.gov/cars/rules/adaptive/>.
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