Mobility: Helping the Mind Move
by Rosalind Kalb
“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.
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
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.
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
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
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.”
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.
originally appeared in the Fall 2000 (Vol. 18, Issue 4) issue of InsideMS. (Last updated December, 2002)