Your spinal cord injury rehab is over. After spending several weeks or months in rehabilitation therapy following a spinal cord injury, brain injury or another acquired disability, it can feel like ending a love-hate relationship.
Even for those with degenerative diseases like multiple sclerosis or ALS, where do you go from here? In the booming $18 billion health and fitness industry, wheelchair users tend to be left behind. The irony is that this is the population that needs more access.
According to the Center for Disease Control, adults with disabilities have a 58 percent higher incidence of obesity than our able-bodied counterparts. Couple that statistic with high incidences of cardiovascular disease, pulmonary disorders, diabetes and the array of secondary conditions like osteoporosis and pressure sores, and this population seems ripe for the health and wellness market. Unfortunately, it is not so easy to access.
Research conducted by Drs. Rachel Cowan, Kim Anderson and Mark Nash found that nearly 64 percent of those surveyed do not have access to a trained therapist to oversee their exercise regimen. More than half reported their physician had advised them to exercise, but less than a quarter had received specific instructions from their doctor regarding the kind of exercise to engage in or how often. Doctors know that exercise and fitness may lead to functional gains in daily activities. There seems to be a need for supplemental therapy and fitness programs, and there is obviously a demand. How does that gap get filled?
One key is to understand the difference between rehabilitation therapy and fitness; both include exercise but with different goals. Rehabilitation has a focus on areas such as recovery and compensation, whereas a fitness plan focuses on conditioning, prevention and performance. There are a host of extended therapy, enhanced fitness and wellness programs popping up around the country. Some are offered by rehabilitation hospitals and clinics, some are stand-alone programs and still others are offered through public access parks and recreation programs.
More and more rehabilitation facilities are offering extended therapy programs. This can give you access to trained professionals, including physical and occupational therapists and nutritionists. They can also offer access to expensive rehabilitation equipment, such as functional electrical stimulation cycling, locomotor training and repetitive motion robotics. These are programs like the PEAK program at Craig Hospital in Denver, Colo., or the Neuro-Recovery Center at Brooks Rehabilitation Hospital in Jacksonville, Fla. These programs tend to be highly structured with goal setting and establishing expectations early in the process of customizing an exercise plan with you. Programs are typically not covered under insurance but payment is available in a “gym membership” payment plan.
Much like clinical programs, these programs offer similar services without being affiliated with a rehabilitation facility. You still have access to equipment, but the staff typically consists of personal trainers and exercise physiologists. These include programs like Journey Forward in Canton, Mass., and SCI-FIT in Sacramento, Calif. Reputable programs will establish goals, set realistic expectations and help you create an exercise plan. Some programs offer a membership fee while others require an up-front payment.
Public Access and Private Gym Programs
Private gyms and wellness centers are starting to offer programs and equipment for people with disabilities. For instance, some YMCA facilities offer FES cycling while others offer roll-up exercise equipment. Parks and recreation departments around the country are now offering fitness centers, aquatics and outdoor fitness zones. Since these are public access, they need to meet the limited requirements under the ADA. These programs are not structured and are not monitored by trained professionals. They do give you access to fitness for a much lower cost.
Kimberly Baker, C4-5-6, says she has gained much “strength, independence and self reliance” during three years of therapy at Walk the Line.
Before beginning any exercise program, you should consult with your physician and make sure you ask some key questions like:
What should I expect from a typical program?
Is it a rehabilitation program or a fitness program?
Will there be a trained professional monitoring my
program? If so, what are his/her qualifications?
What type of equipment will I have access to?
What is the length of the program?
How much will this cost me?
The good thing is access to exercise and fitness programs is expanding; the bad thing is how difficult it can be to find them. Unfortunately, there is no central registry of programs or website to access programs near you. How do you find programs like this? Spinal Cord Central has a listing of some programs (see resource sidebar); that and the National Center on Health, Physical Activity and Disability are good places to start. Ask your physiatrist about local programs and check with your local parks and recreation department about fitness opportunities for people with disabilities.
If you live in a rural area, you may need to start a home-based program. Meet with a physical therapist and specifically request exercises and a home-based plan for your needs. Specifically request a low equipment program and one that is capable of being done at home. Remember to ask how to exercise not only the limbs where you have voluntary movement, but also those that are paralyzed. Also, don’t forget cardiovascular exercise. If it is a home-based program that you are seeking, remember that you need to be the motivator.
Whichever program you chose, the key is to make a choice and a commitment. Like any exercise program, able-bodied or disabled, you can’t make progress without a commitment. Make a plan and stick with it; you will achieve better results.
Contributing authors: Kim Anderson, Jennifer McParland, Candy Tefertiller, Jane Wierbicky.