Community Voices: MS Awareness Week March 10-16

By PATRICIA HELLER, Sturgeon Bay

Diagnosed in 2005

People who know I have MS say, “You look so good.” Meaning, your MS must not be so bad. The response to this compliment is difficult. As is MS. Often, I return compliments. To some who are asking how I am feeling, I say, “Thank you. You do not see me on my ‘bad’ days.” Those who are closest to me have learned to read my face, voice, and body movements and they ask what they can do to help.

MS, or multiple sclerosis, is one of the most misunderstood diseases as there is a spectrum of symptoms. I will explain it this way. MS can attack any muscle and nerve in your body because it affects the central nervous system, producing a myriad of symptoms: fatigue, numbness, tingling, weakness, vision problems, muscle spasms, stiffness, balance, coordination, cognitive changes. When my voice is not recognizable, when I choke on nothing, when I walk topsy-turvy, that is, in fact, MS.  

There are nearly 1 million people in the United States who are living with MS. These are the people who are diagnosed and have reported to an MS clinic in the U.S. In Wisconsin, there are 10,000 reported people. This number is under-reported as many people live with undiagnosed symptoms and get care from other professionals.  

Wisconsin is one of the highest states with reported MS. There are many studies looking at why this may be. Some point to the PCBs in the rivers and metals in old factories and mills. While others point to low levels of vitamin D or possibly having the Epstein Barr virus, or yes, your gut health. Diagnosis is difficult and the origin of MS seems unlikely any time soon.

March 10-16 is MS Awareness Week. It sounds like something to celebrate. For me, it is a reminder that we have a lot of work to do to help people understand and treat this disease along with raising funds for research, new treatments and programs for families living with the disease.

We have a great opportunity to get involved in the MS Movement. Every year for the past 16 years, in late September, Door County has hosted the National MS Challenge Walk, a three-day event where individuals and teams can walk up to 50 miles. (There is also one in Cape Cod and San Diego). The emphasis is not on how many miles you walk but rather on coming together as a community to make a difference by raising funds. Many volunteers are also needed to make this event happen. 

More details will come this year leading to the event so you may check it out. It may just be the event that will change your life and that of so many others.