Multiple sclerosis (MS) is a scary diagnosis. The autoimmune disease has no cure and often strikes people, particularly women, in the prime of life. The disease is progressive, and can cause a variety of symptoms ranging from mild to disabling.
However, thousands of people live full and active lives, despite MS. Michelle Keating is one of them. She has been living with relapsing/remitting MS, a form of the disease in which symptoms worsen at times and improve at others, for more than 32 years. A nurse educator in the Cancer Information Center located in the David C. Pratt Cancer Center at Mercy St. Louis, Keating reaches out to people diagnosed with MS, offering health education and emotional support.
During the ‘One Day for Every Day’ event on Saturday, Oct. 12, at the Hilton St. Louis Frontenac, Keating will be one of several local experts providing practical tips for everyday living with MS related to strengthening relationships, talking about MS with loved ones, and using technology innovations to help make life with MS more manageable. More information, including registration, is available at 1Day4EveryDay.com.
Keating recently shared some thoughts about the event and the disease she lives with.
What is the most important message you plan to share with events participants?
What I hope that participants will walk away with is the encouragement and inspiration to share their story with others. I'm involved as one of the workshop leaders to coach people and provide tips on how to empower themselves. As someone living with MS myself, I know first-hand how important that can be in asking for support.
Why does MS often manifest in the 20s and 30s? Are there early signs and symptoms that are precursors to full-blown MS?
We still don’t know the exact cause. However, our current understanding is that it’s an immune mediated demyelinating disease that attacks the central nervous system, and it affects each person differently. There are currently about 400,000 people in the nation who have MS. Diagnosed at age 25, I am considered a ‘typical’ case. The progression, severity and specific symptoms of MS are unpredictable and vary from one person to another. Common initial symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. Today, it’s important to start treatment as early as possible to lessen the long-term effects of the disease.
What are the most effective methods for managing MS symptoms, including medical and lifestyle interventions?
Because MS is different for everyone, it can be difficult to predict how the disease will develop and therefore, the way people manage the disease varies greatly from one person to another. Medically, it’s important to learn about treatment options and talk to your health care provider about any concerns. There are many treatments that improve quality of life and help delay the progression of MS. From a lifestyle perspective, physical activity is especially important for people living with MS as it can help with some of the symptoms. However, as with any exercise program, it should be tailored to a person’s specific abilities and limitations. Fatigue, a common symptom, may improve with exercise.
What should friends and family of people who have MS understand about the disease, and what do MS patients need to communicate with others about their diagnosis?
It’s important that people realize a diagnosis of MS does not have to mean turning your life upside down—many people with MS have families, jobs, and lead full and happy lives. But having the disease can also mean making some adjustments to your lifestyle. I believe it’s important for people living with MS to communicate with others about their disease, as they feel comfortable, and to share their experiences with their support network.
Research is underway to find better treatments and even a cure for MS. What do you think are some of the most important and positive developments currently in the pipeline?
When I was diagnosed 32 years ago, there were no treatments to slow the disease process. Today, new treatments and advances in research are giving new hope to people affected by MS. There are currently nine therapies available to treat relapsing forms of MS, including three oral medications. New research includes a hope for repair of damage. This is a hopeful time!