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Wheelchair Wellness: Long-Term Mind and Body Care

Health club benefits become accessible to patients with chronic conditions when a wellness program springs from the hospital setting.

Perneita Farrar

Patient Perneita Farrar ambulates with the assistance of weights on her legs and some verbal motivation from therapists. Following this activity, she will transfer her acquired skills over to the land environment.

Based on research gathered and then released in 2008, the Physical Activity Guidelines for Americans (PAG) assisted in the development of national guidelines for physical activity. Healthy People 2020 supported this research, stating the health benefits of regular exercise; however, based on statistics, over 80% of the adult population do not meet the guidelines set forth by Healthy People 2020 and PAG.1

In response to the focus on improving Americans’ overall wellness and health, the community has supported this movement in a variety of methods such as gyms, diet programs, and various fad exercise programs. “No initiation fee; join now for only $10.00 a month; free 1-month trial; lose 30 pounds in 30 days.” These are examples of common phrases that are seen on billboards, commercials, and flyers, and with other known marketing strategies. Sometimes these slogans work and sometimes they don’t lure the able-bodied population into health gyms. As the push from the medical community is to improve overall health and well-being, community facilities such as local gyms have joined in the mission. More awareness and education on the importance of healthier diets, lowering cholesterol, keeping the heart healthy, and defying aging have increased the community’s participation in programs that encourage health and wellness.

What about the large number of people who may not be able to access a typical gym as easily? What about the person who is in a wheelchair and has nutritional concerns and requires assistance? What about the person who has a chronic condition such as a spinal cord injury (SCI) or even an unpredictable condition such as multiple sclerosis (MS)? Often, persons who may require more assistance, more accessibility, or even emotional/physical support do not even attempt to enter a local gym.

Once outpatient therapy has ended, individuals may struggle with continuing their training toward their goals secondary to lack of accessible gyms and decreased motivation. In a wellness setting, individuals with similar goals can encourage each other.

More than $2.5 trillion is spent annually on health care in 2010.2 The rise in health care costs may be attributed to the increase in disease prevalence including chronic diseases as well as the technological advances and ability of the medical system’s ability to treat a variety of diseases. In response to the rising health care costs and the debate on policy, the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) has been leading the nation’s effort in promoting health and well-being through the prevention and control of chronic diseases as one way in managing health care costs. Based on rough data, in February 2012, the estimated average yearly cost of health care and living expenses was over $69,000. This figure did not include indirect costs such as lost wages, yet varies depending on level of education, premorbid work history, and severity of the injury.3

Current data indicates that the number of people living with a SCI in the United States is over 200,000. This number is growing annually with new incidences of SCI.3 Approximately 400,000 Americans are currently living with MS, and it affects more than 2.5 million people world-wide.4 Based on limited data, transverse myelitis accounts for approximately 33,000 Americans with a disability resulting from this diagnosis.5 The long-term goal for individuals with various neurological conditions is the same as for the general population, which includes: weight loss, improved cardiovascular health, overall well-being in body and mind, improved bone health, improved strength and flexibility, and improved joint motion. Additionally, especially in the population of people with SCI, individuals are at increased risk for secondary complications including urinary tract infection, muscle tone imbalances such as spasticity, skin issues leading to wounds, pulmonary conditions, and depression. Individuals with physical impairments or who are wheelchair dependent tend to lead sedentary lives, which leads to development of many of these secondary complications.

Based on the literature looking at participation and wellness for individuals with a disability, attaining an acceptable quality of life is an ultimate goal in rehabilitation. Research out of England has looked further at exercise and the positive impact on quality of life and psychological well-being, including decreasing anxiety, decreasing depression, and improving overall self-esteem.6 Another research project, out of the University of Montana in 1998, examined a program for health promotion of people with spinal cord injury and other neuromuscular disabilities. Information gleaned from this project indicated that persons participating in this program wanted to be around others who were dealing with similar issues and also wanting to be more active.7

Unfortunately, rarely are advertisements or health promotion efforts being designed for the physically dependent population. While marketing strategies and promotion are limited, there have been several identified barriers to engaging in ongoing wellness and supportive health activities. Barriers that are commonly identified include lack of independence, decreased availability and accessibility of facilities, decreased availability of personal assistants for changing and other self-care tasks, limited personal trainer knowledge regarding the various diagnoses, fear of health complications, and lack of motivation.8

Government and health professionals promote and encourage physical activity, yet what are these suggested guidelines? Based on the guidelines set forth by the President’s Council on Fitness, Sports, & Nutrition program, the importance of activity and movement. Below is a list of the guidelines set forth for adults with disabilities and chronic conditions as stated by the government:

  1. Adults with disabilities, who are able to, should get at least 150 minutes a week of moderate-intensity, or 75 minutes a week of vigorous-intensity, aerobic activity, or an equivalent combination of moderate- and vigorous-intensity aerobic activity. Aerobic activity should be performed in episodes of at least 10 minutes, and preferably, it should be spread throughout the week.
  2. Adults with disabilities, who are able to, also should do muscle-strengthening activities of moderate or high intensity that involve all major muscle groups on 2 or more days a week, as these activities provide additional health benefits.
  3. When adults with disabilities are not able to meet the guidelines, they should engage in regular physical activity according to their abilities and should avoid inactivity.
  4. Adults with disabilities should consult their health care provider about the amounts and types of physical activity that are appropriate for their abilities.
  5. Adults with chronic conditions obtain important health benefits from regular physical activity.
  6. When adults with chronic conditions do activity according to their abilities, physical activity is safe.
  7. Adults with chronic conditions should be under the care of a health care provider.
  8. People with chronic conditions and symptoms should consult their health care provider about the types and amounts of activity appropriate for them.9

The promotion of physical activity is not a new trend; civilizations throughout history have focused on ways to improve health. There have been some forms of exercise that have withstood the test of time. These examples include running, walking, tai chi, and yoga philosophies. The latter two examples, tai chi and yoga, both focus on the linkage between exercise and health. Tai chi was based on the premise that human harmony with the world leads to prevention, which leads to a long life. Yoga incorporates stretches, proper breathing, and diet, which relate to the essential control of emotions and the mind.10 Yoga centers and Eastern medicine centers throughout the United States provide an opportunity for Americans to incorporate these long-standing practices in their daily lives for overall well-being.

At Kennedy Krieger Institute’s International Center for Spinal Cord Injury (ICSCI) in Baltimore, there is a move toward further development of an accessible and affordable wellness center to promote activity and support to a population that doesn’t always have accessible resources. This is not a new idea or the first program of its kind, as other well-known rehabilitation facilities across the United States have developed similar programs, but it is still an uncommon type of program. It is not an easy decision both legally and financially for a facility to consider. The hope in this article is to help promote the expansion of more wellness programs throughout the country in order to further assist in the national movement for health and wellness promotion. This article will outline some of the steps that have been taken in building a wellness program out of the hospital setting.

Rehabilitation professionals can only hope that when a home program is developed, the patient/client is on board and will carry out the established program. In working with neurological conditions, following established home programs and receiving follow-up episodes of care is the standard for maintaining and/or restoring function as well as preventing secondary complications or regression. In several cases, the limitation of having the necessary equipment or gyms to participate leads to noncompliance or limited follow-through.

Additionally, not only does the open gym and wellness program provide an opportunity for patients to continue with their long-term rehabilitation goals once their formal therapy has ended, but it is also a way to promote efficiency. By helping patients to become more independent on the Functional Electrical Stimulation (FES) cycles or standers and attend open gym outside of therapy time, the therapist and patient can focus on more functional goals during the therapy session, which is especially important in justifying care to insurance companies.

Due to constrictions with insurance reimbursement and limitations in obtaining expensive FES cycles, many patients were unable to continue following their rehabilitation care outside of the clinic. Initially, the idea of an “open gym” program was developed at Kennedy Krieger so that patients could continue their home programs, have access to the equipment, and continue to socialize. Individuals would pay a nominal fee to utilize the therapy center’s FES cycles during non-peak hours. Patients had to be independent with electrode placement and setup of the bike or have a caregiver present to assist. Initially, this idea and program worked well, but as the program and number of clients interested in open gym increased, the current model could not sustain.

With the opening of a new outpatient center, an opportunity to include aquatic therapy in the rehab program was a possibility. The focus of providing ongoing care for patients outside of therapy turned toward the development of an aquatic wellness center, including ways to allow patients who were independent or had reliable caregivers to continue their established aquatic home programs. Recently, this program has seen further growth with the implementation of incorporating swimming lessons and group aquatic sessions.

While the aquatic wellness program was evolving, the previously established open gym program (land program) was bulging at the seams. Ongoing limitations in growth included: needing more space, needing more equipment, assistance for patients who didn’t have a caregiver to help with setup, requests for different equipment, and request for more hours. Given the current space restrictions, some short-term solutions were developed, but the long-term vision and plan project to one day having a fully functioning and accessible wellness program.

The newest development to the program has been assisted with the acquisition of various grants. These grants have enabled the purchasing of various equipment pieces and even support for wages for staff/training for the program. Equipment that has been added has included free weights, stander-gliders, FES upper and lower extremity cycles, a universal gym, and a treadmill. A weight management program also was added and is an option as well and includes a consultation with a physician and nutritional expert, a fitness assessment, low calorie recipes, and weekly body and weight measurements. With the knowledge that more equipment was being added, space was the next big hurdle to tackle, and this took some problem solving and collaboration with management, but a small space was obtained for the beginning of the wellness program. A wellness coordinator was added to the team, and this person is responsible for assisting in the scheduling for patients who would need more assistance with setup of the equipment. Prior to a patient attending the open gym/wellness program, physical therapists and/or occupational therapists complete equipment competencies to verify safety and training on the equipment. Medical and therapy clearances continue to be required for participation in the activities, and fees have been adjusted based on the particular program participated in. Ray, an active participant in the wellness program and the second participant attending the partnership community gym, stated, “Open gym is great! At most other hospitals, they don’t always let you ride the bikes. It is fun to be there because you get motivated by watching and talking to other people around you and this pushes you to work harder.”

While the development of the on-site program grew, another trial was being completed with a small partnership with a local area gym. This idea would provide more accessibility for patients who may not live as close to the hospital facility, but also would allow access to a variety of different types of equipment. By having this collaboration and support of the gym staff, the opportunity for promoting accessibility for individuals with more involved disabilities to integrate into their own communities strengthened. Although the focus on this program has not gone any further at this time, sights are on some similar collaboration in the future. Ray also indicated that he is able to utilize all of the equipment at the local community gym that he attends, and he has even participated in getting into the gym’s pool.

The future of the wellness program is exciting and endless. Plans and ideas for inclusion of patients, caregivers, family members, and hospital staff have been up for discussion. Wouldn’t it be wonderful if a caregiver whose family member is in inpatient could take a yoga class to relieve and manage some stress? Future programs and ideas include: nutritional counseling, accessible yoga, Pilates, tai chi, qigong, as well as additional equipment and space. Currently, there is focus on establishing a training program and group to compete in a local marathon, half-marathon, relay, and 5K. This united goal in getting the training program off the ground for walkers, runners, and wheelchair users has been incredible.

As mentioned previously, several wellness type programs are available throughout the country and are typically linked with a medical facility. Based on the growing literature of wellness and health promotion as the inclusion of all people, it will be interesting to see if there is further development of wellness programs for those participants who may require or benefit from additional support or specialized equipment. This will require the medical, therapy, and health community to think outside the box. Wouldn’t it be wonderful if your local gym embraced a true community atmosphere and accessibility to all? What about that yoga class where there are participants of all backgrounds and abilities including even the possibility of a wheelchair? How about the vision of two basketball games occurring side by side and the only difference is that one game includes wheelchairs? And finally, how about two individuals training for a 5k, the only difference is that one is running on a treadmill, while the other is training on an underwater treadmill? It is exciting to think of the possibilities in our community that can further empower persons who may otherwise feel unsure of how to pursue a healthy and fulfilling life.


Kimberly Obst, MBA, MSHA, OTR/L, is a Senior Occupational Therapist at the International Center for Spinal Cord Injury at Kennedy Krieger Institute in Baltimore, Md. She has a certification in Aquatic Therapy. She specializes in neurological rehabilitation for adults and pediatrics. She received her bachelor’s degree in Occupational Therapy from Quinnipiac University in 2002. She is also the Clinical OT Recruiter for Kennedy Krieger Institute. For more information, contact .

REFERENCES
  1. HealthyPeople.gov. Physical activity. www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=33. May 1,2012. Accessed June 5,2012.
  2. The Kaiser Family Foundation. Health care costs: A primer. Key information on health care costs and their impact. www.kff.org/insurance/upload/7670-03.pdf May 2012. Accessed June 5, 2012.
  3. The National Spinal Cord Injury Statistical Center. Spinal cord injury facts and figures at a glance. www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202012%20Feb%20Final.pdf. February 2012. Accessed June 6, 2012.
  4. National MS Society. Frequently Asked Questions about Multiple Sclerosis. www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/faqs-about-ms/index.aspx#howmany. Accessed June 19, 2012.
  5. National Institute of Neurological Disorders and Stroke. Transverse myelitis fact sheet. www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm. July 1, 2011. Accessed June 12, 2012.
  6. Raine P, Truman C, Southerst A. The development of a community gym for people with mental health problems: influences on psychological accessibility. J Ment Health. 2002;11:43-54. Doi: 10.1080/096382301200041452.
  7. Block P, Skeels SE, Keys CB, Rimmer JH. Shake-It-Up: health promotion and capacity building for people with spinal cord injuries and related neurological disabilities. Disabil Rehabil. 2005;27(4):185-190. Doi: 10.1080/09638280400019583.
  8. Kehn M, Knoll T. Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation. BMC Public Health. 2009;9:168. Doi: 10.1186/147-2458-9-168.
  9. President’s Council on Fitness, Sports, & Nutrition. General fit facts and tips for specific populations. www.fitness.gov/resource-center/facts-and-statistics . Accessed June 5, 2012.
  10. Centers for Disease Control and Prevention. Chapter 2: Introduction. Historical background and evolution of physical activity recommendations. www.cdc.gov/nccdphp/sgr/intro2.htm. November 17, 1999. Accessed June 27, 2012.