Research shows that the isolation and stress of a chronic disability can be relieved by the development of an individualized wellness plan.
couldn't meet my needs," says Margaret Smith, a 51-year-old woman diagnosed with multiple sclerosis twenty-five years ago.
"After experiencing a spinal cord injury, I went back to school. I even made the dean's list, but I had no balance in my life," says 36 year-old Christine DelPaggio.
Researchers Find Ways to Help
To help researchers investigate how better to serve the exercise and leisure needs of disabled women, Smith and DelPaggio and nearly 100 other women participated in a three-year study conducted by Temple University. Catherine Coyle, PhD, and Mayra Santiago, PhD, led the study funded by the National Center for Medical Rehabilitation Research and the National Institute of Child Health and Human Development. It focused on promoting wellness in chronically disabled women—who number 28 million in this country.
Their research is based on the premise that using exercise and leisure to make lifestyle changes can enhance a person's health and well being. These lifestyle changes may help decrease the
and isolation people with disabilities often experience, while simultaneously improving their health.
The researchers conducted workshops to help the participants identify areas in their lives that they wanted to change. Then they worked with the women to set goals and to develop individual plans to institute the lifestyle changes. They found that relationships, exercise, and leisure needs were the most important factors in forming a wellness plan. To that end, the research team developed and distributed program booklets to help the participants get started: "Building Bridges: Finding and Enhancing Relationships in Your Life," "Move for the Health of It," and "Leisure: The Cornerstone for Health and Wellness."
Relationships are vitally important to everyone, with or without disabilities. So it's important for women with disabilities to strengthen their relationships, which may include helping others understand their needs. One way to do this is to proactively plan out certain activities.
Here are some tips from "Building Bridges":
Consider changes you could make to your social network to better accommodate your disability. For example, if you tire easily, consider seeing people in the morning when your energy level may be higher or contacting people via telephone or email to minimize energy needed for traveling to see someone.
Look for opportunities to spend time with other women with disabilities. It feels good to connect with others who share some of the same concerns. This does not mean that it isn't important for you to include yourself in the social mainstream. It only means that you should pursue relationships with disabled and non-disabled people.
Learning How to Exercise
The researchers encourage checking with your doctor before making any changes to your regular routine. If you're ready to start exercising, consider these basic rules for exercise from "Move for the Health of It":
Exercise consistently, at least three times a week. If you only exercise occasionally, you won't experience benefits.
is a good way to decrease muscle spasms. Be careful not to overdo it. If you feel pain during or after the stretch, you have overdone your stretching effort.
Drink enough liquids to keep your body temperature from rising too high.
When exercising becomes too easy, it means that your body conditioning has improved and it's time to moderately increase your exercise regimen.
Making It Part of Your Life
Smith now does stretching exercises before she gets dressed in the morning. Coyle and Santiago stress, however, that exercise doesn't have to be monotonous. They encourage people with disabilities to incorporate exercise into their favorite leisure pursuits.
"I love gardening," says Smith "and it's an added benefit to know that it's also a good exercise."
DelPaggio, on the other hand, found a disabled rowers group in her area. Rowing is perfect for maximizing her aerobic activity. She also feels an increased sense of strength and enjoys having fun with others.
Choosing Leisure Activities
When considering leisure activities, the Temple University researchers encourage you to consider the following:
Look at your childhood fitness, sport, and crafts interests. Are there any that you'd consider doing again?
Audrey, a Boston woman, took up magic again—an old childhood hobby that helped stabilize her hand-eye coordination.
Think about things that you dream of doing like traveling, snorkeling, or scuba diving. Could you do them now?
What adaptations and accommodations could make some of these activities possible? Do you need to take classes, find out about adapted equipment, or contact travel agents?
Consider different activities.
If all your leisure activities are similar, think about doing something different. Also, think about interests that can be done during different seasons, indoors and outdoors, with or without advance planning.
Leisure activities are not only a fun way to build exercise into your life but also a way to reward yourself for achieving lifestyle change goals. When Smith accomplishes an objective, she rewards herself by taking a carousel ride with her niece.
Making Lifestyle Changes
In developing your own plan, consider some of the things DelPaggio and Smith learned.
Talking with others helps.
Smith and other women participating in the study continue to meet since the study ended. "It helped being in a group. I could offer support and get some of my own misinformation cleared up. I also felt affirmed that my cognitive difficulties weren't uncommon."
Friends provide balance.
DelPaggio gave herself permission to be with friends more. She, too, met with other disabled women through this program and enjoyed exchanging ways of examining priorities. That process helped her bring balance into her life.
It's OK to be upset, but you must move on.
Smith realized it was okay to be upset, especially when she was going through a crisis. She realized that a permanent pity party was counterproductive, but she gave herself permission to host one occasionally. Consequently, she was able to move out of her self-pity sooner.
In developing a wellness plan, use your leisure interests as a springboard and foundation to pursue things you enjoy and try to strengthen those relationships that serve you well.
Please be aware that this information is provided to supplement the care
provided by your physician. It is neither intended nor implied to be a
substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER
IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the
advice of your physician or other qualified health provider prior to
starting any new treatment or with any questions you may have regarding a