MS. Say those two letters to a group of people and the majority will probably answer with, Multiple Sclerosis. Multiple sclerosis is a disease that people recognize. Not surprising give that 2.3 million people have been diagnosed with MS worldwide. At its most basic definition, MS is a chronic disease of the central nervous system. But there is nothing basic about MS, as it is also very unpredictable. The range and severity of symptoms that individuals with MS deal with can be vast, thus a “one-size fits all” approach is not the best course of treatment.
My friend Shawna and her sister Celia are a perfect example of just how differently the disease can affect people, even family members. Celia was the first diagnosed, approximately 17 years ago after she thought she was having a stroke. As Shawna describes it, Celia struggles with fatigue and muscle spasms in every muscle in her body—including those in her forehead! That alone, adds to her exhaustion because her body is never really at rest. Now, a 55-year-old mom of 16-year old twins, it is at times difficult to keep up with her children. Additionally, Celia has cognitive issues (memory loss) and coordination issues that she deals with.
For these reasons, Shawna was very nervous when she was also diagnosed with MS approximately 6 years ago. “When I was first diagnosed, I fought it mostly because I saw how the disease had affected Celia, and I knew that I couldn’t get like that because I wouldn’t be able to work and support myself,” Shawna said. She feels lucky that compared to Celia, she has a mild case that has allowed her to continue to work full time and provide for herself as a single working professional.
For Shawna, her MS diagnosis has made her realize that she must take care of herself each and every day. “I have to balance my stress, or I will have an episode or an exacerbation, even though they have been (to this point) mild,” Shawna said. “And it makes me much more aware of my body and when I’m feeling ‘normal’ and when I’m not.”
While Celia and Shawna have each other to reach out to for support, as well as their immediate and extended family support, not all people with MS have such a network. Luckily, for those affected by the disease, a plethora of resources are available. HealthComU was recently contacted by such an organization, MS One to One, in advance of World MS Day on Wednesday. This complimentary patient support program that is available to anyone at any stage of their MS journey utilizes specially-trained MS nurses to “connect directly with people living with MS to provide personal support and advice about how to manage this disease through one-on-one conversations.”
One such nurse, Denise Chicoine had this to say: “All people living with MS can benefit from some type of support. Through the MS One to One program, I am able to provide tips and resources that are truly relevant to each individual. Anyone living with MS can visit the MS One to One website or call one of our nurses to talk about their disease or just to hear a friendly voice.”