“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, the ultimate sign of defeat. Viewed from a different perspective, however, canes, walkers, motorized scooters, or wheelchairs help people live active lives. They promote independence, conserve energy, and generally make life easier.
Time to refocus
Before people can begin to see mobility devices this way, they first need time to deal with their frustration and loss. 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. It requires letting go of the old self and gradually redesigning a new one that can incorporate the limitations. Grieving is a natural part of this, and will ebb and flow with fluctuations in the disease.
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? What will they be in the future? What changes do I need to make? What are my options?
This is a crossroad where a new set of choices needs to be made. It’s not surprising to feel overwhelmed, 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.
I have some questions that may help people who are stopped at this crossroad.
Exhausted or Energized?
The most common symptom of MS is fatigue. At one time or another, virtually everyone will experience a tiredness that interferes with daily activities. People who have to concentrate on each step they take may find themselves too tired to focus on the world around them. The effort to get from one place to another can be so draining that they wonder why they set out in the first place.
But many people with MS resist using mobility aids for fear that they will become dependent on them. Sometimes well-meaning family members or friends insist: “You can still walk—you don’t need a mobility aid yet.”
In reality, energy is one of our most valuable resources, and people with MS can use mobility aids to protect this precious commodity. Devices can get them where they want to go with enough energy to be productive—and have fun—once they get there.
Many people (including some health-care professionals) are concerned that using mobility aids is “habit forming”; they think once a person sits down, she or he may never get up again. This is a distorted view of the reality of MS fatigue. People with MS definitely need exercise, preferably a regime they design with a physician or physical therapist. Using up precious energy struggling to walk can be a poor choice.
Giving In or Taking Charge?
Using a mobility device is “giving in to MS” many people say. They are determined to resist any change that would crown MS the winner. I would recommend reframing the image. Try to think of MS as a series of battles to be fought rather than a big war to be won. We have no cure as yet, but we do have a variety of ways to reduce battles to minor skirmishes.
Mobility devices can become tools for winning, not giving in. A cane or a rolling walker, for example, can prevent falls and show others that the problem is medical—not substance abuse. A scooter can make shopping trips manageable, and visits to a museum or zoo a pleasure instead of a trial. A person might use a cane or nothing at all on the best days, and go with a walker when feeling more fatigued. A wheelchair or scooter may even make a new sport possible or reopen the door to an old favorite. People in scooters bowl, fish, and play golf. Others use wheelchairs for tennis or basketball.
Dependent or Independent?
People with MS often say that using a mobility device will rob them of independence. The longer they resist, the more independent they feel. In reality, mobility devices allow people to go where they want 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 keeps up with others and arrives looking (and feeling) in control.
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 this uncomfortable situation 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 be happy to 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.
Consider the young woman in a scooter waiting at a street corner for the light to change. Convinced that the man staring at her was about to make some pitying or derogatory comment, she sped across the street. The man caught up to her and said, “Can you please tell me where you got your scooter? It looks great. Something like that could really help my wife.”
For additional information
Gait: An overview
Dr. Kalb, a clinical psychologist specializing in the needs of people with MS and their families, is the director of Professional Information & Library Services at the National MS Society.
This article originally appeared in the Fall 2000 (Vol. 18, Issue 4) issue of InsideMS. (Last updated December, 2002)