If you have multiple sclerosis (MS) and have recently started using a wheelchair -- or you think you might be about to use one regularly -- you might wonder how it will change your life. Will you be able to stay active? Will it affect where you can go and what you can do?
“The reality is a wheelchair can give you more independence, not less,” says Dave Bexfield, founder of the nonprofit website ActiveMSers.com.
Bexfield, who lives in Albuquerque, NM, was diagnosed with MS in 2006. He began using a wheelchair in 2009 after he had a relapse while on vacation in Italy. He’s since traveled to 17 countries. He says that four wheels haven’t slowed him down a bit. “There are few limits to what you can do,” he says. “Will you be the fastest? No. But you can keep living your life well.”
That isn’t to say the transition is always seamless. “You have to come to an acceptance about using a wheelchair. That can be tough,” says Kathy M. Zackowski, PhD, senior director of patient management at the National Multiple Sclerosis Society. “I encourage patients to think of a wheelchair not as a crutch, but as a tool that helps you stay mobile.”
Own Your Wheels
Choosing the right wheelchair is the first step toward being able to go where you’d like, when you’d like. That doesn’t mean you have to buy the most expensive model available.
It does mean you need a wheelchair that:
- Fits your body
- Is lightweight enough for you or your loved ones to lift and move easily
- Is comfortable to sit in for long periods of time
“If you’re able, visit a seating clinic, or at least seek out a supplier who specializes in wheelchairs,” Zackowski says.
Once you’ve found the right fit, consider adding personal touches, like decorations or a drink holder, to make it feel like it’s yours. Consider practical details, too. Do you have a place to put personal items or an umbrella? If you live in a cold climate, can you change your wheels for winter weather?
Staying active requires forward thinking. “Ask yourself: What do you want your life to look like? What do you want to keep doing -- or start doing?” says Kathleen Matuska, PhD, chair of the occupational science and occupational therapy department at St. Catherine University in St. Paul, MN.
Talk to your doctor about your goals. If you can, work with an occupational therapist (OT). Your insurance should cover therapy, though it may require a form from your doctor.
“Occupational therapy is really about problem solving,” Matuska says. “Say you want to go back to work with your wheelchair. An occupational therapist can help you figure out every step: getting up and getting dressed, getting into the car or on the bus, going into work, using the bathroom there, etc.”
An OT can help you figure out almost any task, from grocery shopping to playing with your kids.
On a day-to-day basis, strategic thinking can make outings easier. “If you’re going to a new place, call ahead to find out if they’re wheelchair accessible and what the layout is,” Matuska says.
Do your best to prepare for sudden changes in weather or circumstances. For example, bring an extra sweater or jacket and carry medications you take regularly with you so you never feel stuck.
When in doubt, pair up with a spouse or trusted friend when you take a different route or try something new. The more you use your wheelchair, the easier it gets.
Have a People Plan
One tricky part of staying social is dealing with other people, especially if you’ve just started using a wheelchair. “Most people are so nice,” Bexfield says. “They mean well and want to help.”
Still, others’ reactions can catch you off guard. “They may express sympathy or talk about how disabling a wheelchair is,” Zackowski says. “Even if you’re feeling good and confident, a comment like that can throw you."
She tells patients to have a reaction ready. “If you’re good with humor, maybe it’s a funny response, like “You don’t like the way I look in my wheelchair?” Or maybe it’s something positive, like “I actually like using a wheelchair. It allows me to keep doing what I love.”
It can help to talk to others who’ve been in your situation. Consider an online group like Bexfield’s or an in-person support group through your local chapter of the National Multiple Sclerosis Society. Hearing how others have made the transition and thrived can help you do the same.