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Spinal Cord Injury Paralysis Resource Center

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Study: It's Time for More People Living with Disabilities to Get Moving for their Health

By Nate Herpich

Rock Climbing

Most people understand that exercise is good for the bodies of both able-bodied and disabled individuals alike. The breadth of scholarship in the field has suggested that the more fit you are, the healthier the life you will lead. This isn't shocking information, by any means.

But what might be more startling are the statistics compiled and released in Spring 2014 about chronic disease from the Centers for Disease Control. According to the report, "working age adults with disabilities who do not get any aerobic physical activity are 50 percent more likely than their active peers to have a chronic disease such as cancer, diabetes, stroke, or heart disease." And not only that, nearly half of those living with disabilities who are able to exercise, don't do so. It's an alarming trend.

Of course, for people living with disabilities, it can be very difficult to find ways to get moving: Access to equipment and to caretakers willing to participate in recreation can be hard to find and is often very expensive. Many people don't even know how to get started, and question their own body's ability to compete in sports. Part of the problem: according to the CDC Report, only 44 percent of people living with disabilities who visited their doctors in the past year were encouraged to exercise. How can one expect to know this is a viable option, if one's doctor hasn't even brought it up?

Here, the Christopher & Dana Reeve Foundation speaks with three individuals living with spinal cord injury who have found varying degrees of success with exercise in their own lives.

Finding opportunities to exercise
In 2008, Zachary Masters was hospitalized due to the onset and progression of a spinal cord injury. Prior to developing a spinal cord injury, Zachary had always been athletic, and he loved to be outdoors. He skied, played tennis, swam, rode bikes, and climbed mountains, to name just a few of his favorite activities.

But he remembers that, as he lay in his hospital bed feeling physically and emotionally defeated, he wondered if he'd ever be able to do any of those activities again.

In some ways, Zachary says he was lucky. He had an incredible family support system and he was able to do his begin his rehabilitation at The Shepherd Center in Atlanta, Georgia, one of the nation's premier institutions for spinal cord injury rehab, and they encouraged him from the onset to find ways to resume an active life.

Upon returning home he made contact with a local rehabilitation hospital, Helen Hayes Hospital, where they had a programs available like handcycle rides in a nearby park, where the handcycle itself was free to borrow. "Definitely contact the rehabilitation centers in your area -- they will have a good idea about what might be going on near you," he says.

Zach also reached out to the Christopher & Dana Reeve Foundation, where he began to learn about grants that are available to those people living with disabilities looking to get involved with sports and recreation. He has since been awarded two grants from the Challenged Athletes Foundation, a group that provides monies for equipment, training, and travel to athletic competitions, for a handcycle and a sit ski. "Do your research before applying for these awards, as if you're writing a grant proposal," counsels Zach.

It hasn't been all easy. As is the case with many aspects of life when a person becomes disabled, things can take a little bit longer. "First, you need to do your research, and find out where you can participate in sports – sometimes, this is far from home, and unrealistic," explains Zach. "You'll need to find a way to get proper adaptive equipment, which can be very expensive or altogether inaccessible. And you need to find people who can help you out, depending on the activity. When I go surfing, I can't get across the beach to the water without someone's help."

Still, opportunities are out there. "Try and find a mentor through your rehabilitation center, or through an organization like the Reeve Foundation," he suggests. "Our community thrives on the transmission of information between people, and this is no different with regards to sports and recreation."

Handcycling

The barriers are real
Charlotte, North Carolina native Dawn (who asked that her last name not be used), has found getting involved with adaptive sports to be a "big struggle" since a degenerative disease progressed into a T8-T9 spinal cord injury that left her paralyzed. She has encountered hurdle after hurdle despite a desire to become active again, and the realities of cost and inaccessibility have often contributed to her depressed state.

At one point along her life's journey, Dawn was able to use a handcycle thanks to a loaner program in Charlotte, but after a period of time, she had to return the bike. It was during a particularly difficult period of grieving in her life, when she was facing the realization that she wouldn't be able to pursue the PhD she was on track to get, and losing this principal source of escape led her into depression. She gained a lot of weight, which only furthered this state, and left her feeling trapped and alone at home. "Losing this loaner bike was like insult to injury, and at a bad time in my life," she says.

As she gained the weight, Dawn felt more isolated, and more reticent to go out into the world. She worried about whether she could even fit into some of the adaptive equipment she says wasn't designed for her body type. Her shrinking personal budget only heightened the reality that she couldn't afford to cycle anyways. Not an athlete, she was intimidated by programs that catered more to team sports, and the nature of her injury wouldn't allow the kind of physical contact found in sports like rugby and basketball anyways. Formerly a human services professional who worked 50-60 hours per week to advocate for others, she developed her own sense of ableism toward herself.

The good news is, eventually, the depression started to lift. She decided to have a gastric bypass, and has lost 160 pounds. She is practicing better nutrition, and is now hard at work to find grants to help her secure that handcycle which she knows would go a long way toward losing that last 30-40 pounds she wants to lose. She's accepted her condition and is looking past her own "damn pride" to find ways to help herself.

"My biggest suggestion to people is don't delay the grieving process when you're newly injured," says Dawn. "I did, and it's taken a very long time for me to get over some of the issues I'm dealing with."

She also now sees recreation as an opportunity: as a way to not only help herself, but others. If she's able to win a grant for the $5,000 it will take to get a handcycle (a sum which will never fit into her budget due to a limited income and ongoing medical costs), she aims to participate in fundraising rides for organizations such as the Christopher & Dana Reeve Foundation.

"I reached a point in my life where I knew I was going to die young if I didn't change my lifestyle," she says. "I'm at a crossroads in my life now, where I know I'm going to figure this out, despite all of the very real burdens. I'm not there yet, but I'm on my way."

John Vcelka

Half the battle is showing up
In 2005, John Vcelka injured his spinal cord while skiing. He spent five months rehabbing at Craig Hospital in Denver, Colorado, where he was first introduced to adaptive sports and recreation. It was just the beginning of a story that has grown into something very big.

"I started out handcycling," John remembers, "but decided pretty quickly that I didn't enjoy doing it alone. I started an email list, which grew to about 60 people in 30 minutes, as a way to bring people together through adaptive sports. And I haven't looked back since."

Now, John runs Sports Abilities, a resource for people with disabilities to find advocacy, support, and adaptive sporting activities in communities across the United States. What started as a simple email list has become a website categorizing thousands of events from more than 600 organizations nationwide. Sports Abilities' mission is simple: to get people outside, active, and healthy. It's John's own mantra for how he lives life.

John's biggest piece of advice to getting started: just show up. "It doesn't matter if you've done an activity before or not, you never know what kind of recreation you'll end up enjoying," he says. "And don't worry about the learning curve, all of us have different levels of expertise, and get better the more we practice. Sports and recreation is about community, and practicing a healthy lifestyle. "

John Vcelka

The first step for someone new to adaptive sports -- find out what's happening in your community. The Parks Department is often a great resource for learning about what's available in your area, and the Reeve Foundation's free resource guide is also a great place to start. Sports Abilities, of course, is one of John's favorite jumping off points.

He also says, before reaching out to programs, find out what you can do from your doctor. But again, don't be discouraged to try new things.

"There are so many possible excuses, which come from real fears," he says." We think about medical issues that might arise while playing sports, about how we'll be able to go to the bathroom, or what if I have to go over a curb to get to a field.

"But once you make a decision to show up, you'll be surprised at how supportive the community is."

The Adaptive Sports Center (ASC)A non-profit organization located in Colorado that provides year-round recreation activities for people with disabilities and their families.

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on Aquatic Therapy (PDF)

A Reeve Foundation Fact Sheet on Golf for People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Nutrition and Weight (PDF)

A Reeve Foundation Fact Sheet on Sports and Competition (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Fitness and Exercise (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF) - English

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF) - Spanish

A Reeve Foundation Fact Sheet on FES Treadmill Information Sheet (PDF)

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

American Association of AdaptedSportWorks to enhance the health, independence and self-sufficiency of youths with physical disabilities by facilitating adapted sports programs in local communities, in cooperation with schools, parks and recreation, YMCA/YWCAs, hospitals, parents and other groups.

Aquaticnet.comTherapists. Instructors. Managers. To all in the Aquatics industry. This is your single online clearinghouse of aquatic therapy and fitness information. Why re-create the (aquatic therapy) wheel? We are The Aquatic Therapy Command Center.

Blaze Sports501(c)(3) nonprofit organization that advances the lives of youth and adults with physical disability through sport and healthy lifestyles. BlazeSports provides sports training, competitions, summer camps and other sports and recreational opportunities for youth and adults with spinal cord injury, spina bifida, cerebral palsy, traumatic brain injury, muscular dystrophy, amputation, visual impairment or blindness as well as other physical disabilities.

Craig Hospital: SCI Health and WellnessWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Centers for Disease Control and Prevention (CDC)Features numerous articles and resources on fitness, nutrition and healthy living.

Clinical Trials: Ambulation ProgramsList of ambulation programs currently seeking volunteers.

Clinical Trials: Locomotor (treadmill) TrainingList of trials involving locomotor (treadmill) training.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

Disabled Sports USAOffers nationwide sports rehabilitation programs to anyone with a permanent physical disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events. DSUSA, as a member of the U.S. Olympic Committee, is the governing body for winter sports for all athletes with disabilities, and for summer sports for amputee athletes. Nationwide chapter network of sports and rec programs.

Inclusive Fitness CoalitionAddresses the policy, environmental and societal issues associated with the lack of access to physical activity among people with disabilities.

ILRU: RRTC on SCI: Exercise InformationThe ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.

The Handicapped Scuba AssociationPromotes the physical and social well being of people with disabilities through the exhilarating sport of scuba diving.

Hand CyclingWhether for fitness, serious competition, or pure recreation, here's a sport that can be enjoyed by many and provide quite the "ride" at the same time.

International Paralympic CommitteeThe International Paralympic Committee (IPC) is the global governing body of the Paralympic Movement. The IPC organizes the Summer and Winter Paralympic Games, and serves as the International Federation for nine sports, for which it supervises and co-ordinates the World Championships and other competitions.

High Hopes Head Injury ProgramThe High Hopes Head Injury Program was started in 1975, as a result of tough hard work and need of several families. This one-of-a-kind non-profit charitable organization was dedicated to the rehabilitation and retraining of their loved ones who had been devastated by traumatic head injuries.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

Lokomat at Sister KennyLokomat® is a robot-assisted treadmill that supports a patient in an upright position while moving the legs through a normal walking pattern – even if a patient is unable to move his or her legs independently.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

Life Rolls OnLRO is the story of able-bodied individuals, working in concert with those with spinal cord injury, to motivate each other with the inspirational message of achievement in the face of extreme adversity. Life Rolls On utilizes action sports through our flagship program, They Will Surf Again, which pushes the boundary of possibility for those with spinal cord injury (SCI).

Lokomat Program at Rehabilitation Institute of ChicagoThe Rehabilitation Institute of Chicago (RIC) provides robot-assisted walking therapy using the Lokomat® to help people improve their ability to walk after disability caused by brain and spinal cord injuries, stroke or neurological and orthopedic conditions.

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Rehabilitation Information Center for Independence (NARIC)NARIC offers a range of services, from quick information and referral to extensive database searches of the latest disability and rehabilitation research. They also offer a number of publications, including directories, guides and statistical reports.

The National Center on Physical Activity and Disability (NCPAD)Resources promoting physical activity for people, and for health, fitness and exercise professionals.

National Wheelchair Basketball AssociationBasketball is perhaps the oldest organized sport for athletes in wheelchairs. The game is fast and fun, and played in dozens of cities across the U.S.

The National Center on AccessibilityNSCD provides recreation for children and adults with disabilities. In addition to recreational downhill and cross-country skiing, snowboarding and snowshoeing, NSCD provides year-round competition training to ski racers with disabilities. Summer recreation opportunities include biking, hiking, in-line skating, sailing, therapeutic horseback riding, white water rafting, baseball, fishing, rock climbing for the blind, and camping.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

The President’s Council on Physical Fitness and SportsInformation on making exercise an important part of your life

Quad RugbyFormerly known as murderball, Quad Rugby is a game for quads who can push a chair. Fast, rough and very competitive.

RT 300 FES BikeRTI designs and markets innovative electrical stimulation ergometers to help people with a neurological impairment achieve their full potential.

Reeve Foundation NeuroRecovery Network (NRN)The Reeve Foundation NRN is a perfect example of basic science being translated to the clinic and changing lives. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, it is a network of cutting-edge rehabilitation centers whose staffs have been trained in intensive activity-based treatments.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

Sprint AquaticsOver the years Rothhammer International, commonly referred to as Sprint Aquatics, has been designing and patenting products that continue to revolutionize the aquatic industry. As the current owner, Laurel Maas's primary goal for Sprint Rothhammer was and continues to be creating products that meet the needs of those who use the pool as a form of physical therapy, training, and recreation.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

The Uppertone SystemIntroduced in 1990 by a C4-C5 quadriplegic, the Uppertone System allows people with C4-C5 paralysis and below to do upper body exercises necessary for rehabilitation and maintenance, without assistance.

The United States Tennis AssociationTennis has been adapted for the wheelchair player: the ball can bounce two times. This allows chair-players to give standup players a run for the their money. The sport is growing fast and is very competitive at the elite level. Click on "community tennis."

U.S. ParalympicsA division of the U.S. Olympic Committee, it is dedicated to becoming the world leader in the Paralympic sports movement and promoting excellence in the lives of people with physical disabilities through education, sports programs and partnerships with community organizations, medical facilities and government agencies.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

World T.E.A.M. SportsUnites people with and without disabilities through unique athletic events taking place all over the world.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.