“Will I end up in a wheelchair?”
It’s the first question many people ask when told they have MS. The use of any type of mobility device is often viewed as the hallmark of disability. However, canes, walkers, motorized scooters, or wheelchairs help people live active lives. They promote independence, conserve energy, and generally make life easier. Getting used to the idea of using them can be hard but it is the first step toward staying fully mobile.
Take time to grieve
When walking becomes difficult, people need to grieve. It’s normal to feel sad and angry about a limitation that alters one’s life. Changes of this kind force people to develop a different picture of themselves, and changing self-image is never easy.
The grieving process also involves tackling some difficult questions:
- Who am I now that I can no longer do things the way I used to?
- What are my goals now and what will they be in the future?
- What changes do I need to make? What are my options?
New choices need to be made. The task may feel overwhelming, and I would urge people who feel this way to talk it over with a doctor or a counselor. The National MS Society can refer callers to counselors who are familiar with these issues.
Many people with MS resist using mobility aids for fear that they will become dependent on them—that they are “habit forming.” They think once a person sits down, she or he may never get up again. And sometimes well-meaning family members or friends insist: “You can still walk—you don’t need a mobility aid yet.”
This is a distorted view of the reality of MS fatigue. Why use up precious energy struggling to walk when you can use it for something more productive—or fun?
Energy is one of our most valuable resources. People with MS use mobility aids to conserve this precious commodity. Mobility devices can get them where they want to go while saving enough energy to be productive—and enjoy themselves—once they get there. A person might use a cane or nothing at all on the best days, and go with a walker when feeling more fatigued.
Tools for winning
Here are some of the ways that mobility devices actually improve life:
- Prevent falls and show others that the problem is medical—not substance abuse.
- Make shopping trips manageable, and visits to a museum or zoo a pleasure instead of a trial.
- Make a new sport possible or reopen the door to an old favorite. People in scooters and wheelchairs bowl, fish, and play golf, tennis or basketball.
Finding your independence
Mobility devices can allow people to go places without having to rely on others. They can keep pace with everyone else, “walk” side-by-side, and share laughter and conversation.
Family members, friends, and co-workers ultimately benefit too. They no longer find themselves worrying about the person with MS getting hurt in a fall or becoming too tired to stand.
Embarrassed or Empowered?
Many people struggle to walk unassisted so others won’t stare, feel sorry for them, or think less of them. They may accept a cane, but resist a walker or crutches. And some will stay at home rather than be seen in a scooter or wheelchair. In other words, they dread being stigmatized or labeled.
It’s worth remembering that mobility devices often help people look less disabled. A person struggling to walk may look like a drunk. A person using a cane looks purposeful, and may even give off an aura of confidence. A person sitting comfortably in a power chair arrives looking (and feeling) in control.
But people who use aids do sometimes have the experience of being treated as though they’re invisible. This example is all too common: A man in a wheelchair and his wife go into a restaurant to have dinner. The server turns to the wife and asks what her husband would like to have.
In an uncomfortable situation like this it’s important to remember that the server is probably not being intentionally unkind or insensitive. Most people have little understanding of disability, and simply do not know what is and is not appropriate. To handle this, the wife might say, “I don’t really know what he would like, but I’m sure he’ll tell you.” Or, the husband might respond, “I’ll be happy to give you my order.” In other words, people often need to be shown how to respond.