Back on two feet
Local multiple sclerosis patient’s path from debilitation to high functionality
Amy Clark’s legs first started going numb in 2002, when she was a 23-year-old college student in Tacoma, Wash. During a recent interview in Chico, the Paradise woman compared the sensation to a limb falling asleep—a “prickly, weird feeling” from the waist down. Gradually, the numbness began to affect her ability to walk or even balance on two feet. Equally disturbing, she began having difficulty with her vision as well.
Clark didn’t know it at the time, but those symptoms were the initial manifestations of multiple sclerosis (MS), a disease that would, in a few years’ time, hinder her everyday function and cast doubt on her professional and personal aspirations.
MS is an incurable autoimmune disease in which the body attacks nerve cells in the brain and spinal cord, damaging the myelin sheath (an electrically insulating coat around the axon of a nerve cell). The nervous system’s ability to communicate with the rest of the body is subsequently disrupted, resulting in a wide range of physical, mental and psychiatric problems. The disease takes several different forms, manifesting either as isolated “attacks” or more consistent symptoms. Clark’s disease is of the former variety. At times, her symptoms would disappear entirely, but they would always come back—often worse than before.
Clark was formally diagnosed in 2003, when a magnetic resonance imaging (MRI) scan revealed white lesions on her brain and spinal cord (a telltale sign of her body attacking the myelin around her nerve cells), and the results of a spinal tap left her physician with “no choice but to diagnose me with MS.”
But she found her doctor less than helpful in deciding how to proceed.
“I was told, ‘You have MS. Here’s all the propaganda from the different drug companies; read through it and pick [a medication],’” she recalled. “I was ill-equipped to make that decision, as are most people in that position.
“I didn’t want to accept it: I went from being fine to all of a sudden having a debilitating disease.”
At the time, treatment options were limited to injections of two drugs—interferon and glatiramer acetate. Over the next few years, Clark would try both, to no significant effect. Her MS symptoms persisted and she averaged one full-on attack per year. Much of the time, one side of her body would become partially paralyzed, forcing her to “drag her foot along” because it simply wouldn’t move the way she wanted it to.
“With MS, each day can be a different day, and that was very much the case at the time,” Clark said. “Sometimes I was walking with a cane, sometimes I was using a wheelchair; other times I was using a walker. I couldn’t go to the grocery store and walk down the aisle; I had to use one of their motorized carts. I just couldn’t do it—I couldn’t walk.”
As her disease got progressively worse, she came to terms with the fact that her life likely was changed forever.
“Because of the nature of this disease, you can imagine what you’re thinking,” Clark reflected. “You’ve heard the horror stories; you can see what it’s doing to your body. You’re clearly suffering from something that’s changing your ability to function, and you imagine the worst: ‘I’m going to need to use a wheelchair the rest of my life. We’re going to have to sell the house. My life is turned upside down.’”
In 2006, Clark had another MRI, which revealed even more white lesions than before. “My brain lit up like a Christmas tree,” she said. “It was clear that I had a very active disease.”
Later that year, a doctor in Seattle recommended a new MS drug called Tysabri, which had been on the market for only a few months. Having explored her other treatment options, and with the potential for permanent neurological damage looming, Clark decided it was “time to pull out the big guns.”
The drug—administered intravenously once a month, rather than a self-administered daily injection, as she had done with previous drugs—was almost immediately effective. Clark’s symptoms have been in remission for the past seven years without a single attack.
Originally from Arnold, Clark returned to California in 2010, moving to Paradise, where she enjoys hiking with her husband along the Feather River and Butte Creek, boating, and going to the gym for Zumba and aerobics classes. “Now, I can walk just fine,” she said. “I can do whatever anybody else can do.”
Aside from her full-time job with Medflow, an East Coast-based electronic-health-record software company for optometry, Clark is a spokeswoman for Tysabri. She also leads a monthly support group for Butte County MS patients, backed by the Northern California Chapter of the National Multiple Sclerosis Society, an organization aimed at raising awareness and helping patients deal with the physical, social and financial obstacles they encounter as their disease progresses. Her email list for the group includes about 35 people, but she said there are between 200 and 250 MS patients in the county.
Now that she’s back on her feet, Clark takes nothing for granted. She still feels the disease in her body, in the background. “I try to be as active as I can,” she said. “I’m making hay while the sun shines, because I’m not cured. I respond to this medication now, but it could come to an end.”