Lara Rogers

HOW DOES ONE TAKE ON MULTIPLE SCLEROSIS?

Multiple Sclerosis is a debilitating disease that has many unknowns. Because of those unknowns, such as the cause or the cure, many people are left suffering in a difficult and uncertain position. Nearly one million people in the United States have been diagnosed with MS, and it is affecting over 2.5 million individuals across the globe (National MS Society). The unfortunate reality is many people with this disease know that their symptoms are only going to get worse because there is currently no cure to terminate the disease completely. With more research, advancement in technology, and a greater understanding of the cause of Multiple Sclerosis, it might be possible to find a cure for the disease.

So, what is Multiple Sclerosis and how does it impact a person? Multiple Sclerosis is an immune response and neurological-related disease that affects the body’s central nervous system. When the T Cells invade, it causes an immune response reaction that impairs the nervous system. There are five main phases of how the T Cell moves across the membrane that causes neurological damage in the central nervous system. The first phase is Activation, where the T cells develop and become activated. Then in the second phase, Adhesion, the T cell connects to the adhesion molecules. The cell and molecule join together to become a cell complex in phase three (Attraction) where they are then pushed out into other places in the body during stage four, Invasion. During Invasion the cell complex can invade the central nervous system and disrupt communication by breaking down. In Reactivation, stage five, the immune system attacks the antigens that the cell complexes have created. This causes inflammation in the nervous system and impairs myelin (Brodkey, Ben-Zacharia, and Reardon). The impairing of the myelin is what causes neurological processing to be incorrect, leading to different types of symptoms common in Multiple Sclerosis. In essence, the immune system attacks the body’s central nervous system, causing damage or inflammation to myelin (National MS Society).

There are four main types of MS that patients tend to have: Clinically Isolated Syndrome (CIS), Relapsing-remitting MS (RRMS), Secondary Progressive MS (SPMS), and Primary progressive MS (PPMS). Clinically Isolated Syndrome is the first stage of MS; meaning individuals experience neurological symptoms of MS for at least twenty-four hours. In spite of that, patients who experience CIS might not be officially diagnosed with Multiple Sclerosis based on whether or not the patient has lesions on the brain. Lesions can indicate both that another episode is likely, and the person could suffer from Multiple Sclerosis long-term. The most common type of MS is Relapsingremitting MS. An individual with RRMS suffers relapsing attacks creating neurological symptoms. These symptoms may be short-term or long-term depending on the extent of the attack. After a relapse, the patient goes into periods of recovery called remissions. This cycle is repeated over and over again throughout the patient’s lifetime. Secondary progressive MS (SPMS) is when a patient experiences relapsing initially and then continues to see a decline in the function of the neurological system. It often leads

to a range of disabilities, including limitations in physical movement (walking and talking) and cognitive issues (memory or thought processes). The initial relapsing stage is usually not present in Primary progressive MS (PPMS). Instead, it is typically a stable decline in one’s neurological ability. PPMS can also result in similar disabilities as SPMS, although they can be more severe depending on the extent of the damage to the central nervous system. About 15% of people with Multiple Sclerosis have PPMS (National MS Society). Each of the four different pathways of MS is challenging for every individual diagnosed with the disease. In addition, each person’s reaction to the disease can be different. Furthering more difficulties in diagnostics, trying to cure the disease itself, or managing the symptoms.

While MS might be different for every person, some of the most common symptoms are a squeezing sensation (typically around the middle of the body and the abdomen), troubles walking, muscle spasms that cause stiffness, and vision problems. All of these symptoms create issues in ones’ day-to-day life. A patient might even experience dizziness or fatigue and numbness. The fatigue can be experienced throughout the whole body or specifically in the muscles (National MS Society). About 50% of patients with MS experience cognitive issues. Hearing, speech, memory, and judgment may be altered as a result of the neurological pathways being disrupted. This can explain why some might struggle in forming sentences or why one might have memory issues. When these symptoms first arise, it is unknown whether they will be long-lasting or short-term. Or even if the symptoms will continue to decline or stabilize (John Hopkins Medicine). Therefore, it is important to get the right treatment in a timely manner in order to make sure the symptoms do not get worse than what is manageable.

At this time, research is still being conducted in order to determine the root cause of Multiple Sclerosis. Because there is not an evident main origin, it is believed that it is caused by a multitude of factors. These factors can include genetics, environment, or even viruses. These influence how one might develop MS and how the body responds to the neurological attacks during relapse (John Hopkins Medicine).

Because the cause of Multiple Sclerosis is still under speculation, it is hard to say who will get this condition versus who will not. However, gender, geology, and genetics seem to play a factor in where MS is common. Women have been 3 times as likely compared to men to be diagnosed with one of the four types of MS. This could be due to different hormones in women and men, therefore making it more likely in female genetics to develop Multiple Sclerosis. The geographic location could also play a factor in if one develops severe symptoms of MS. Multiple Sclerosis is more common in areas that are located further away from the equator. For example, in the United States, the area most impacted by Multiple Sclerosis is the Northeast (National MS Society). Race also plays a role based on your ancestry; Caucasians, specifically from Northern Europe, have been more susceptible to MS. In addition, individuals with a greater risk of MS are those with a family history of the disease (Cedars Sinai). Obesity, low Vitamin D levels, and smoking also have shown evidence to be linked to increasing the likelihood of MS and increasing the potential for a relapsing attack. Despite the contributors to MS, most patients who are diagnosed will first experience symptoms between the ages of 20 and 50 (National MS Society).

Before MS is diagnosed, other possible diseases first have to be ruled out. Because there is not an easy way to test for MS, individuals who might have it, have to undergo several tests. These tests include MRIs, blood tests, and spinal fluid analyses to determine any other stemming diseases that might have caused similar symptoms to MS. Other than ruling out all other diseases, there must be damage seen in the MRI to at least two different parts of the central nervous system and that damage must have been done at two different points in time. Therefore the patient must have gone through multiple attacks or there is evidence of a significant decline in the central nervous system. This can include more damage to nerves around the spinal cord or more lesions on the brain (National MS Society). Once the damage is evident, then an individual is diagnosed with MS.

Despite the fact that there is no cure for MS, there are several ways that the symptoms can be treated to decrease the effects on the body. The treatments can also help mediate the issues in relapse and prevent relapse from happening. Possible treatments range from comprehensive treatments to medications to different types of therapies. Comprehensive treatments include multiple doctors attempting to take on different symptoms of the disease. Therefore, numerous doctors can work together to find the best path for the patient to avoid an extreme takeover of the body. Avonex, Betaseron, Gilenya, and Lemtrada are different types of medicine (oral, injectable, and intravenous infusion treatments) specifically designed to manage relapsing forms of MS. Other than medication, physical therapy, occupational therapy, and speech therapy are other ways to slow the rate of disability. Physical therapy helps with balance, fatigue, and bladder issues. Whereas occupational therapy aids cognitive issues. And speech therapy assists both muscle strength in swallowing and talking, in addition to cognitive thinking while speaking. Therapy treatments have proven to be successful in slowing the rate of declining symptoms. Furthermore, diets, exercise, stress management, and Vitamin D, are extremely helpful in maintaining the body’s correct balance. By sustaining the body’s health and balance, an individual can avoid developing worse symptoms. Maintaining stability over the body’s health can prevent infections or other minor diseases that could spark a relapse or cause symptoms to worsen. It is key to be diagnosed early on in life, that way treatments can start early and prevent worse, long-term symptoms (National MS Society).

Following and keeping up with treatments, whether medical or CAM (Complementary and Alternative Medicine), can decrease the likelihood of rapidly developing declining symptoms. Maintaining good health helps the patient to persevere physically from relapses. It can decrease the rate of relapses, as well as the extent of symptoms during relapse. Another way to minimize the chances of a relapse is to have good mental well-being. Minimizing stress, having a positive attitude, and staying centered are ways to balance the emotions. Hormones cause very fast changes in the way one might react. And because there is already hormonal imbalance, it is all the more important to try to stay calm and avoid a relapse. In addition, having a positive attitude will help during remission periods in bouncing back from the relapse (National MS Society).

Ruth Ann Marie led other researchers in a study that compared mortality rates among different cohorts, including individuals both with and without Multiple Sclerosis.

Marie and her team found that the average life expectancy of individuals with MS has increased over the last 25 years to only seven years shorter than an average lifespan. As far as deaths by each cohort, Marie states “considering all years of data, in the MS population, age-specific mortality did not change for persons aged 39 years and younger (0.0097; 95% CI: −0.083, 0.10), but decreased by 0.23 (95% CI: −0.065, −0.39) per 1,000 population per year for those aged 40 to 59 years and by 0.52 (95% CI: −0.25, −0.80) for those aged 60 to 69 years” (Marie). This means the death rate of MS patients between 40 and 69, decreased overall compared to studies conducted in the past. This improvement in life expectancy could be a result of new information and technological improvements in recent years; hopefully, this trend can continue. Additionally, it was determined that the rate of death because of MS-related complications had decreased, as well. Therefore, there were not as many people dying from urinary tract infections, pressure ulcers, and pneumonia; all of which are commonly associated with Multiple Sclerosis (Marie).

There is much potential for medical professionals and researchers to find a cure, new treatments, and new prevention methods to manage Multiple Sclerosis. The National Multiple Sclerosis Society (NMSS), along with many researchers, have taken the initiative to make these improvements to better our understanding of how MS can be controlled. In addition, the internet and numerous research studies have provided countless individuals access to learn more about Multiple Sclerosis. Whether it is through gaining connections with doctors, support groups, or just reading more about the disease itself, it is much easier to find the information that is needed for patients. Supplying many with comfort. Increasing the number of supporters of MS and the number of people aware of this cause enables additional research and opportunity to help more people. With the combination of new advancements in learning about Multiple Sclerosis, there is a way to find a cure.

WORKS CITED Krodkey, Marion Brandis, et al. “Living Well with Multiple Sclerosis.” The American Journal of

Nursing, vol. 111, no. 7, Lippincott Williams & Wilkins, 2011, pp. 40–50, http://www.jstor. org/stable/43821428. “Clinically Isolated Syndrome.” Cedars Sinai, StayWell Company, www.cedars-sinai.org/healthlibrary/diseases-and-conditions/c/clinically-isolated-syndrome.html. Accessed 9 Feb. 2022. “Multiple Sclerosis (MS).” John Hopkins Medicine, Johns Hopkins University, www. hopkinsmedicine.org/health/conditions-and-diseases/multiple-sclerosis-ms. Accessed 9

Feb. 2022. The National Multiple Sclerosis Society. National Multiple Sclerosis Society, www. nationalmssociety.org/. Accessed 9 Feb. 2022. Ruth Ann Marrie, Lawrence Elliott, James Marriott, Michael Cossoy, James Blanchard,

Stella Leung, Nancy YuNeurology Jul 2015, 85 (3) 240-247; DOI: 10.1212/

WNL.0000000000001718 “Who Gets Multiple Sclerosis.” Multiple Sclerosis Association of America, mymsaa.org/msinformation/overview/who-gets-ms/. Accessed 9 Feb. 2022.

THE NATIONAL MULTIPLE SCLEROSIS SOCIETY

I completed my service scholar hours at The National MS Society (NMSS) while working remotely and at a couple of in-person events. Due to concerns for patients’ health, the NMSS decided to not allow volunteering in person at their local office. Rather, I got the opportunity to work remotely. I made spreadsheets and worked on existing ones that were given to me. These spreadsheets were contact information for cold outreach. In order to find volunteers for the Bike MS races and the upcoming Walk MS events, I researched schools, companies, youth groups, religious organizations, etc. in local areas for each of the events. The races and walks that I did research for were all over the South, including Mississippi, Kentucky, and Tennessee. After researching the areas, I called or emailed the companies who further talked with people within their organizations regarding the ability to volunteer. Although most of the races were able to be conducted, a couple got canceled due to Covid outbreaks. Luckily, I was able to go to two bike races in person, Bike MS: Bluegrass Bourbon Ride and Bike MS: Bike to Jack and Back. The Bluegrass Bourbon Ride was a shorter ride that included biking around Bardstown, KY. The Bike to Jack and Back ride was biking from Franklin, TN to Lynchburg, TN on Saturday and then biking back from Lynchburg to Franklin on Sunday. During these bike races, I helped at registration sites, as well as at rest stops. I prepped the riders with all their riding information prior to the race and helped them get snacks and water at the rest stops.

The Bluegrass Bourbon Ride was the first race that I attended and while there were still many bikers, the Bike to Jack and Back race had many more riders than I could imagine. It was a majority of the riders’ first ride back after the pandemic; it was incredible to the excitement on the riders’ faces to finally be able to bike again. There were people of all ages participating in these events. I met people who were 70 years old who were ready to hop on a bike and ride 80 miles; it was so encouraging. Through talking to people at the in-person races, I was able to grow connections with individuals who had MS or individuals who had experienced seeing a loved one go through MS. It was amazing to see and hear other people’s stories. Everyone there shared a common interest: supporting people with MS. It was remarkable to see some people’s dedication to the cause going out of their way to show support. In addition, at these races, I met several donors to the NMSS. It was breathtaking to see the amount of money raised through these events because I know how important the donations truly are to The National MS Society. At the Bike MS: Bike to Jack and Back event, over $600,000 was raised during the two-day ride. All the money donated goes into research to learn more about Multiple Sclerosis and to find a cure. I am glad that I was able to experience volunteering for The National MS Society because it enabled me to feel a part of something larger.