When Walking Fails

I've had multiple sclerosis (MS) for 26 years and have used a battery-powered scooter to get around for almost 15. On my travels, out in the streets, in shops, and particularly during long waits at airports, people frequently come up and talk to me about my scooter – asking me what it's like to use, how far it goes, how they can get one for themselves, their parents, or someone they know who is having trouble walking. They tell me very personal stories about themselves, family, or friends and their walking problems. Many say they don't know where to turn for advice. I'm happy to answer their questions. My scooter has transformed my life, giving me back some sense of independence and control. It's fun and gratifying to convey this message of hope to strangers.

But about seven years ago, I started wondering why people were asking me these questions. Why weren't they talking to their doctors or other professionals? I decided to reverse the tables, to go out and ask people about how walking problems affect their daily lives and about the barriers they confront to getting information and restoring their mobility. This book is full of their stories. I wrote it to help people like the strangers who talk to me understand their options and learn from the experiences of others facing similar situations. I also want to inform clinicians how they can better assist their patients who have mobility problems.

I am a physician, a graduate of Harvard Medical School. So I know my way around the medical community and how clinicians think and what they are taught. From looking at the scientific journals that primary-care physicians read to keep up-to-date on medical discoveries, I know that very little is written about addressing walking problems or restoring mobility. Most general doctors have little experience prescribing wheelchairs or other mobility aids or working with rehabilitation professionals.

Actually, I was never able to practice medicine, so I do not see patients. I was diagnosed with MS during my first semester at medical school, although I'd probably had the disease for several years. I graduated in 1984, six years before passage of the Americans with Disabilities Act. Back then, few medical schools helped their students who developed disabling medical conditions continue with their training. In fact, I learned quickly never, ever to talk publicly about my condition – a disease that, after all, modern medical science cannot cure! So for well over a decade, I virtually never mentioned it, although everyone can see I use a wheelchair. I finally realized that that kind of silence perpetuates the stigma historically accorded people with disabilities. And, in any case, strangers were not shy about coming up and talking to me about my scooter.

Yes. About 10% of adult Americans who live in the community–not in nursing homes or other institutions– report they have at least some difficulty walking. Almost 80% of them say these problems will last more than a year. My book is about how these walking difficulties affect their daily lives, their relationships with family and friends, and their abilities to work and play in their towns and neighborhoods. The book also describes how doctors and rehabilitation therapists approach walking difficulties, how various mobility aids might help, and how health insurance policies often prevent people from getting necessary services and equipment. The book uses stories from the 119 persons whom I interviewed, as well as my own experiences, to explore these various topics.

Almost everybody is touched at some point in their lives either by having mobility difficulties themselves or having a close relative, like a parent or grandparent, with trouble walking. Walking difficulties impede even the most trivial-appearing activities, like going to the sink for a glass of water. This obviously can affect people's independence and quality of life, let alone their abilities to earn an income, do household chores, go shopping, and attend church or social gatherings. It also compromises safety, increasing the risk of potentially life-threatening falls.

The single most common cause is arthritis, with back problems in second place; together they account for roughly 35% of walking difficulties. Other common causes include accidental falls, heart and lung diseases, stroke, and diabetes. Apart from accidents, these are all chronic diseases that increase with aging. However, over 30% of people with difficulty walking say their problems started when they were under 50 years old. With the current epidemic of obesity among children and working-age adults, I fear that walking problems will begin at even younger ages in the future. Obesity is a leading risk factor for arthritis and diabetes, both top causes of mobility problems.

The answer depends on the cause. Controlling pain, as in arthritis, and treating any underlying diseases are obviously critical. Then, as a basic principle, the more exercise the better, although people should optimally work with physical or occupational therapists to design the most helpful and realistic exercise programs. Therapists can also evaluate how patients get around their homes and recommend strategies to improve safety, like installing handrails on stairs or grab bars in showers or next to toilets. The safer people feel, the more likely they are to get up and move about their homes. Even such minimal exercise is important.

At some point, walking independently is no longer realistic for many people. The good news is that diverse mobility aids are now available, ranging from the old fashioned wooden cane to rolling walkers with seats and handlebar brakes to lightweight manual wheelchairs to scooters to high-tech battery-powered wheelchairs. Even something as simple as using a cane or rolling walker can help people off-load weight from their painful joints, allowing them to walk further and with greater safety. Choosing a mobility aid is an intensely personal decision, which must consider a variety of factors. People should therefore work with their physical or occupational therapists and physicians to select the optimal mobility aid for them.

I interviewed several people who said they would not use a wheelchair for fear they would never leave it. Then, I interviewed many others who said their wheelchairs had literally reopened the world for them. That was certainly true for me. When I finally admitted I could no longer go where I wanted because my MS had progressed, my scooter restored my independence and sense of control over my mobility. I now travel extensively with my wheelchairs, rolling without exhaustion or fear of falling. But starting to use a wheelchair is understandably a huge step. I recommend that people experiment, maybe renting a wheelchair to go on a special family vacation that would otherwise be impossible. Many wheelchair users still walk whenever they can, such as around their homes or work places. For example, I still walking in my home, relying for support on strategically placed furniture, doorframes, and grab bars.

Health insurers will only pay for rehabilitation services, like physical or occupational therapy, when patients are improving. However, most people with chronic conditions will not improve. In this instance, the goal of therapy is to maintain their current functioning or prevent further declines. Insurers will not pay for that. Patients must therefore pay for the therapy themselves, and many people cannot afford it.

Health insurers strictly limit payment for mobility aids. Medicare, for example, will only pay for a wheelchair or scooter if people need to use the equipment in their homes. But many people still walk around their homes, so they would not qualify for Medicare coverage. Unfortunately, salespeople often tell potential customers that Medicare will cover devices like scooters; people who purchase these devices may later find that Medicare denies their reimbursement. My private insurer refused to pay for my scooter asserting it was "a recreational vehicle analogous to a golf cart." I could afford to pay for my scooter, but many people cannot.

This will likely be an even bigger problem in the months and years ahead than it is now. Many people with mobility problems are poor and rely on Medicaid, the joint federal-state health insurance program for impoverished people. With huge state budget deficits, Medicaid programs are being drastically cut. Today, in many states, Medicaid funding of rehabilitation-related items and services is either being eliminated or slashed to the bone.

The ADA and other federal and state laws have certainly improved physical access throughout communities, like access to public and private buildings and transportation services. However, there is a long way to go. Even on Fifth Avenue in New York City – in the fashionable district – some curbs do not have curb cuts. This means rolling out into dangerous traffic below the eye level of most drivers, which is very scary. New buildings are often technically accessible but not welcoming to persons with mobility problems: They don't have functional automatic door openers, and the accessible entrance is hard to find, hidden behind the building. All future construction should not only be accessible but also welcoming to people with mobility difficulties. Considering access up front is much cheaper than retrofitting existing buildings.

Medical science is working hard to discover better pain medications, longer-lasting artificial knees and hips, and even ways to replace cartilage in joints. Treatments for heart and lung diseases, strokes, and diabetes might prevent their debilitating effects. Research in neurological diseases, like MS, Parkinson's disease, and Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS), may someday offer substantial treatments, but no cures are yet on the immediate horizon. As noted earlier, the most worrisome trend is the epidemic of obesity especially among young persons. Without addressing obesity, reducing nationwide rates of mobility problems will be difficult. Remember that the top cause of disability in adults is arthritis, which is strongly related to obesity. Obesity also causes cardiovascular disease and diabetes – other leading causes of mobility problems. Reducing obesity will be the most effective strategy toward lowering future rates of walking problems.

New technologies will certainly offer innovative ways to restore mobility. Ibot, which uses gyroscope technologies to raise riders to standing height and climb stairs, and the Segway Human Transporter, which also relies on gyroscopes to carry standing persons, are two creative examples. However, these technologies are not right for everyone. Ibot will cost almost $30,000. Segway moves fast and therefore can be potentially dangerous, to riders and other occupants of sidewalks and streets. Hopefully, more inventors will address the challenge of improving mobility aids.