Cindy Lewis wishes to be portrayed as a person with hope. At 45, Lewis suffers from a chronic disease. In the 16 years since her diagnosis, she has gone blind in one eye, suffered from vertigo and lost her ability to walk. These episodes came and went unexpectedly. Such is the mystery of multiple sclerosis.
MS is a chronic and often disabling disease of the central nervous system. According to the National Multiple Sclerosis Society, most people are diagnosed between the ages of 20 and 50. Approximately 400,000 people in the United States have the disease. Symptoms are numerous and can include abnormal fatigue, loss of balance, difficulty in walking, numbness, pain, vision problems, stiff muscles, bladder and bowel dysfunction, depression, dizziness, tremors and memory problems. Symptoms are unpredictable and vary from person to person. The disease is not fatal or contagious. Medications may slow the progression of the disease for some, but there is no cure. MS has changed Lewis' life in a variety of ways. She is no longer able to work. She suffers from memory loss and has difficulty getting organized. Some days, she has trouble walking and may need to use a cane or wheelchair. But these difficulties don't stop Lewis from having a positive attitude.
Having MS "has made me change the way I think about things," she says. "Anyone with a chronic illness learns to appreciate today rather than put things off down the road. I've met a lot of people with MS I wouldn't have met otherwise; I haven't met someone with MS I don't like."
But often, people don't know someone with MS or haven't heard of it. It's "a disease that is not well known and not well understood," says Chris Uithoven, president of the MS Society's Arizona Chapter. "It's confused with other diseases. When I go to speak, the first question I often hear is, 'Oh, you're Jerry's kids?' I tell them what we are not. ... It's confusing, because it's different from person to person. One person may be in a wheelchair, and another individual may be able to walk and function pretty well."
In those situations, the disease can be misleading. People with MS often look unaffected. Spend a day with someone with the disease, and "things are not always what you see," says Lewis.
Someone with MS may look "fine." But you may not realize it took them two hours to get their clothes on, because they could not balance or bend easily. Nor may you realize the exhaustion they are experiencing. And you cannot see if they are in pain or discomfort. All of these "hidden" symptoms are part of the unpredictable disease.
To raise awareness and funds for MS, the Arizona Chapter of the National Multiple Sclerosis Society is having a "Walk on the Wild Side" fundraiser Saturday, April 16 at Reid Park. The 5K walk starts and ends near the intersection of Broadway Boulevard and Randolph Parkway. Registration starts at 6 a.m., and the walk starts at 7:30. Register for the walk by calling 747-7472, option 2, or just show up the morning of the event. For more information about MS, visit nationalmssociety.org.
While some of the money raised supports national research, most of "the funds go toward providing programs and services for those with MS in the state," says Uithoven. "We provide educational programs for people newly diagnosed ... offer physical activity programs such as yoga and pilates ... do recreational programs to keep families together ... and have a youth self-help group."
Lewis is familiar with the services offered and assists those with MS by co-facilitating a support group in northwest Tucson. The group tries to "seek out people who are newly diagnosed." But those who do not have the disease are welcome, since the disease also affects families.
Some celebrities are battling the disease, too. Richard Pryor, Annette Funicello, Teri Garr and Montel Williams all have various degrees of MS. Even with these four people, the affects are varied. Pryor is wheelchair bound, and Williams hosts a television show.
Although celebrities are helpful, "we fall into the trap of connecting ourselves to the celebrity rather than the mission of the organization for those people with the disease," says Uithoven.
One a recent trip to a restaurant with her disabled father, Uithoven visited a restaurant that claimed to be accessible. "There are only a few steps," said the restaurant employee. But to those who are disabled, a few steps make a world of difference.
This is true for another local woman with MS who walks with two canes. Diane, my 45-year-old sister, walks slowly and carefully, checking her balance with each step. Diagnosed with a progressive level of the disease, her symptoms have increased over the last 10 years. She is not able to work or currently drive.
This doesn't get her down, as she maintains a cheerful attitude. As it did with Lewis, the disease has taught her to appreciate what she has. It has also shown her the generosity of others, as people from all walks of life have held doors for her, helped her down curbsides and carried packages. She, in turn, has offered inspiration and a resolve others have labeled "brave."
Although she has difficulty walking and faces extreme exhaustion some days, Diane has found that love, laughter and faith are essential. She shares the hopeful attitude of Lewis and believes the most important thing is to never give up. For those with MS, determination is really the best medicine.