by Marichel Vaught
Imagine waking up in the morning, ready to prepare for the day ahead, when you notice that swinging your legs off the bed seemed to need a little more effort. And when you finally stand on your feet, you immediately topple over as if your legs are no longer there. Or, imagine going about your daily routine when you suddenly notice numbness in one of your legs that isn’t going away and it makes you start walking with a slight limp. These are among the countless symptoms that lead people to seek out medical attention that eventually leads to a diagnosis of multiple sclerosis.
What exactly is multiple sclerosis? Multiple sclerosis, or MS, is a chronic disease that affects the central nervous system — brain, spinal cord and optic nerves — causing disruption between the brain and the body. Covering the nerve fibers of our central nervous system for protection are fatty materials called myelin. When the immune system attacks this myelin sheath, the protective layer around the nerves is damaged leaving the nerves vulnerable and unable to correctly send signals to parts of the body that allow mobility and sensory feeling. The damage can cause impairment to muscle control, balance, vision or speech, depending on the nerves attacked.
There is no single known cause and as of yet, no cure. According to the National Multiple Sclerosis Society, multiple sclerosis is thought to affect 2.3 million people worldwide. There is no centralized reporting system, so no accurate number of people living with multiple sclerosis is available. Some factors increase the risk of developing multiple sclerosis, such as age, race, gender, genetics, viral infections and environment. It is more common in Caucasians than any other race, is mostly developed between the ages of 20 and 40 and women are two times more likely to have it than men. MS could stem from an infection such as Epstein-Barr or other autoimmune diseases such as diabetes. The number of cases is higher in areas of temperate climate, such as the northern United States. In fact, rates of MS are higher in areas farther from the equator. In Vermont, there are thought to be 1,400 people with multiple sclerosis, according to the Greater New England Chapter of the National Multiple Sclerosis Society.
There are four types of multiple sclerosis — relapsing-remitting, secondary-progressive, primary-progressive and progressive-relapsing. About 85 percent of people diagnosed with multiple sclerosis are initially diagnosed with relapsing-remitting multiple sclerosis, making it the most common form. Patients with relapsing-remitting multiple sclerosis have symptoms that come and go. They experience the symptoms for a period of time that is followed by a period of recovery and no symptoms at all. It is typical that relapsing-remitting patients transition into secondary progressive after 10–15 years. In secondary-progressive multiple sclerosis, the symptoms worsen over time and the recovery or symptom-free periods lessen. Ten percent of patients are diagnosed with primary-progressive multiple sclerosis. In primary-progressive multiple sclerosis, the symptoms worsen and there is essentially no recovery or symptom-free period. Progressive-relapsing multiple sclerosis is the least common diagnosis. In progressive-relapsing multiple sclerosis, patients have worsening symptoms followed by a period of relapse, but unlike relapsing-remitting multiple sclerosis, the patient is unable to regain function after the relapse.
More and more medications, injection and oral, are becoming available to help slow progression and therefore may only be effective on patients with relapsing-remitting multiple sclerosis. Holistic healing, such as naturopathy and acupuncture, has also become more prevalent with multiple sclerosis patients.
One important thing to note is that multiple sclerosis manifests itself differently in every BODY. One person with multiple sclerosis may need to rely on the use of a wheelchair. Another person with multiple sclerosis may have a slight limp from time to time. And yet, another can have full mobility but be legally blind. For some people it is visually evident that they have it because of their use of a mobility aid or abnormality in their gait. For some others, no one would ever guess they had a disability.
Currently, the Greater New England NMSS is one of 15 disability-support organizations promoting two bills in the Vermont legislature, H.238 and S.176. Both bills seek income tax credits for home modifications required by a disability or physical hardship. The bill was introduced in the previous legislative year and is now in the Senate. However, no movement is expected on them this year. Sponsors of the bills are Sen. Anthony Pollina, P/D-Washington; Sen. Michael Sirotkin, D-Chittenden; Rep. Robert Krebs, D-Grand Isle; Rep. Patsy French, D-Orange-Washington-Addison and Rep. William Frank, D-Chittenden.
Multiple sclerosis can strike practically anyone in any time of their lives. There are hundreds of research projects happening worldwide to learn more about this debilitating disease and how to cure it. Each year, several fundraiser walks are scheduled throughout the country in order to raise money for research funding and building support programs. These walks also give the opportunity for those affected by multiple sclerosis — whether they have it themselves or know someone else who does — to come together and raise awareness.
Walk MS 2016 is scheduled for Montpelier on May 14. The walk will begin at Montpelier High School at 9 a.m. Participants can choose between the 3.3 or 5 mile routes. Each participant is also asked to help raise funds of at least $25. People can walk as an individual or as a team. As a frequent participant, I noticed that the number of people walking for Montpelier has been dwindling each year. In an email from Wesley Snyder, NMSS event manager, the walk had its largest registration in 2012 with 133 walkers. From that year, attendance has slipped to 100, 96 and as low as 88 just last year. The reason for the decline is unknown.
The Bridge is proud to be a media sponsor of Walk MS 2016 in Montpelier. If you are interested in participating in the walk or making a donation, visit walkms.org and 05602 in the “Find a Walk” section. People are also welcome to join The Bridge’s own walking team, The Bridge Beat. Register for that particular team at http://main.nationalmssociety.org/goto/bridgebeat.
In the next issue of The Bridge, learn more about treatment for multiple sclerosis and meet Julie Sancibrian, a central Vermonter who has been living with multiple sclerosis for 20 years.