Walk with Me
After decades, I'm back on my own two feet. I feel joy—and a faint electric sting.
Brian Murray, my physical therapist, had made a few last adjustments to the technology banded about my knee and then I took a step. And then another.
It was a February morning in 2010 when we embarked on our trek from the Department of Physical Medicine and Rehabilitation at Johns Hopkins Hospital, down the hallway and then left past the cafeteria. “This is going to take time to build up your strength and build up your muscles,” he counseled. We stopped a few times as Brian made some more adjustments. My legs were tense. My shoulders were tight. I hadn’t been upright like this in many years. I was winded, but I kept moving.
You’ve got to make this work, Sheila, I told myself.
Those slow steps in the hospital were little miracles. In some ways, I began that walk almost 30 years ago on North Broadway, just west of the School. In 1981, I was a PhD student in Environmental Health Sciences. I had a husband, a seven-year-old daughter, a master’s in nursing, a dozen years of teaching and work experience and an enthralling challenge studying individuals with cardiovascular disease returning to work.
I started noticing that the late afternoon walk to my car parked on Broadway taxed me more than it should have. I had problems with balance. A heaviness in my right leg made me unsteady. The doctor confirmed something was wrong.
Multiple sclerosis. The autoimmune disease destroys the myelin sheath protecting nerve cells in selected parts of the neuromuscular system. I was 35 years old, in the first year of my PhD, and I thought the world was going to end.
It didn’t. My husband, Bill, was very supportive and told me there was no reason to stop studying. Life was pretty good for five years. I continued my studies, completed my degree and then joined the faculty. Eventually, my endurance decreased. A full-time job, a long commute and maintaining my family life became increasingly challenging. Walking for any distance became difficult. Trips to the grocery store required exquisite planning or else I would have to find a place to sit and rest. Recouping my energies became a big part of my day. Eventually, I purchased a scooter and a minivan with a mechanical lift. I could navigate the halls of the School and zip over to the nursing building to teach a class. (I had a reputation for driving full-tilt. I never got a ticket, but I once almost ran over former Dean Al Sommer.)
Over the next two decades, I wore out three or four scooters and as many minivans.
As my disease progressed, I found myself sitting more and walking less. It’s as though my middle age was stolen from me. The scooter was helpful but it’s not the same as walking on your own steam. Accessibility was always a challenge. I had to be very creative in opening doors on my own. At a conference in England, I had to swallow hard when we found that the building had only one elevator: a freight elevator. Riding up with cabbages and overripe tomatoes isn’t necessarily glamorous, but it got me to the presentation.
I was fortunate to draw on many resources as the disease slowly progressed. I relied on my family, my friends, my coworkers and my income. Resources come in a lot of different packages. After my husband died and my daughter was married, I moved to a condominium in Baltimore and began swimming to regain my strength. Then, my physical therapist suggested I try something called the NESS L300. He said it could help me walk again. I’m naturally optimistic and a bit of risk taker. When an opportunity presents itself, I give it a try.
The L300 consists of a heel sensor in my shoe, a control unit on a lanyard on my neck and a device on my knee that stimulates the nerves in my lower leg with a faint sting of electricity. Together they correct the foot-drop on my right side caused by MS.
I can walk now. I can’t ski, I can’t run, but I can greet people by looking them in the eye. A colleague accustomed to seeing me scooter-bound said, “I didn’t realize you are as tall as you are!”
I’ve never been one to go out and get the latest gadget but have always appreciated technology. My experience with this device has made me ever more hopeful for people. I always hope no else will be diagnosed with MS. Until then, this piece of technology has expanded my life. Used by 600 hospitals and clinics in the U.S., the L300 is helping thousands of people with MS, brain and spinal cord injuries and strokes, to walk—though it doesn’t help everyone. With its steep cost of $7,900 (which is not covered by my insurance plan), it’s not yet a public health, population-level solution, but remember: Computers once filled rooms and cost millions of dollars. Now they’re in our phones. This is translational research. With future advances, this kind of technology will surely help more people and those with other neurological diseases. The price will come down as well.
For the moment, I can tell you how this technology has changed my life. I realize now that there is nothing so wonderful as to stand on your own two feet and negotiate the world.