A personal outlook on the struggles of multiple sclerosis
Multiple Sclerosis is a challenging disease. It causes a person’s immune system to attack the protective insulation around nerve fibers in the brain and spinal cord. But those living with the disease were given another challenge during March.
As part of the 2011 MS Awareness Week MS patients were invited to answer this question: what does MS mean to you? WBEZ’s Steve Waraunaskas provided his answer.
What does multiple sclerosis mean to me?
Many things…It’s a challenge, it’s a discipline, and it provides motivation.
Multiple sclerosis symptoms can range from slight numbness in the limbs to paralysis or blindness. When I was initially diagnosed 9 years ago, MS became the challenge of the unknown. Hours of research into an intimidating amount of information regarding MS treatments, therapies, and lifestyles was a daunting task. As the days went by, I was slowly able to wrap my brain around all the implications of what MS is and where it could lead me. The path through a life with MS slowly became clearer. Instead of looking at M-S as one large challenge, I decided the best course for me was to break it down into a series of smaller obstacles, faced day by day, taking small steps instead of trying to leap over everything in a single bound.
There is no cure for MS and the best treatments currently available can only slow its progression. I treat my MS in many ways using a combination of medication, diet, and exercise. It takes a lot of discipline to keep working on all those fronts, especially on days when I’m feeling strongest or during a period when my symptoms are in remission. My current MS medication regime requires me to receive a 90 minute intravenous infusion of a drug administered at the hospital every 4 weeks like clockwork. There are times when knowing that I’ll have a needle stuck in my arm and will be spending an hour and a half hooked up to an IV when a far more pleasant activity in my life presents a conflict can be a little depressing. But I know if I skip just one treatment, my symptoms might just get a little bit worse. Then it’s MS that starts posing the conflicts with the activities I want to enjoy instead of the other way around.
Having MS is also incredibly motivating for me. Every summer the Illinois chapter of the National MS Society stages a bicycle event fundraiser called the Tour de Farms. Cyclists from all over the state pedal the farm roads of northern Illinois raising money and awareness to fight MS. The Tour covers over 150 miles in a weekend and the rest stops along the way are staffed by volunteers, many of whom have MS. Every year I assemble a team of family and friends to ride the Tour.
I HAVE to ride every year…to help my fellow MS patients who struggle with the disease and to use the exercise to keep my body strong and my MS symptoms at bay. My teammates CHOOSE to give up a weekend to do this. Seeing the effort they put in year after year for the benefit of all of us diagnosed with M-S humbles me. More importantly, it motivates me to keep working hard to show that the treatments and therapies developed through their efforts in the Tour do work and someday all of us with MS will lead symptom free, normal lives.
What does having multiple sclerosis mean to me?? Well everything really…a reason not to quit, a reason to stay the course, a reason to not get complacent when things are good and not get down when things are bad.
It’s a curse, a blessing, and a cause.
Music Button: Sharon Jones and the Dap Kings, "The Reason", from the CD I Learned the Hard Way, (Daptone)