Living Life With MS: The Symptoms And Sacrifices As Told By Patients, Caregiver

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If you were to meet Kristin Decker, you would never know she’s been living with multiple sclerosis (MS) for nearly five years. At 28 years old, Decker awoke one morning with droopiness on the left side of her face, numbness, and the loss of her vision. What she described were the first symptoms of MS, a disease that turned Decker’s immune system against her and continues to attack the protective layer over her nerves, known as myelin.

When myelin is damaged it disrupts the communication between the brain and the rest of the body, ultimately deteriorating the nerves themselves in an irreversible process, according to the Mayo Clinic. Currently, there is no cure for the 2.5 million people in the world like Decker. Each person’s condition varies with their own symptoms, from mild forms of relapsing-remitting, to the more severe and unrelenting secondary and primary-progressive stages.

“It really happened so quickly,” Decker told Medical Daily. “It was really in a matter of a week that I lost vision, my face was dropping, and I had numbness. Within two weeks, I had symptoms, I was in the hospital, and I was diagnosed and sent on my way.”

Decker called urgent care and they told her to go to the emergency department. She eventually saw a neurologist who, after testing, wrote her a prescription for an MRI and told her they were pretty sure she had MS. After they placed her on steroids, administered a spinal MRI, and a spinal tap, Decker was officially diagnosed with MS. Decker immediately met her diagnosis feeling frightened. The only person she ever knew who had MS was her aunt’s sister, who had a more severe and progressive form of MS. Decker began to think her future would be lived out in a wheelchair.

Life had drastically changed in a short amount of time. Everything became trial and error. She started taking daily injections of Copaxone when she was first diagnosed and then was relieved to switch over a twice-a-day pill of Tecfidera. She calls herself lucky for having a quick diagnosis and a mild enough form that allows her to be involved in raising donations and awareness.

Decker, with the encouragement of her friends and family, decided to get involved in the search for a cure by forming a team to raise crucial funds and walk in Jersey City’s National Multiple Sclerosis Society’s Walk MS. In the last four years, Decker and her team “All Hands on Deck” have become top fundraisers, collecting over $60,000 for the National Multiple Sclerosis Society. She describes it as her Christmas. The night before the big day she says she could hardly sleep, and when the day finally presented itself, she was humbled by the generosity and support from family, friends, and coworkers.

“I’ve learned that health, especially diet, plays so much into how you feel,” she said. “The paleo diet eliminates dairy and grain, which causes inflammation, and because you already have inflammation with MS, anything that you can eliminate makes such a difference. When I have cheat days, afterwards I’m like ‘that was such a bad idea. I’ve been very lucky with my diagnosis because I have a milder case. But heat, stress, and lack of sleep are points when I’m like, ‘OK, I need to step back and take it easy.’”

Over time, living with MS has become easier for Decker to adapt to and accept. Since her diagnosis, she’s entered into an entirely new community through social media, her local gym in Hoboken, and online support groups. She’s also joined the National MS Society’s Community Engagement Committee in order to become more involved in community-led events. Through community-based connections, Decker believes people have greater access to information, which allows them to modify their diagnosis and curb their symptoms.  No two people have the same MS, but she’s found connecting with people and learning about their experiences helps impact her own condition. Diet and exercise have been an outlet and, in a way, a form of treatment for her.

Inspiration to Overcome Obstacles

Before February 2010, exercise had been a large part of the then-26-year-old Daniel Buckelew’s life. He was an athlete all throughout college and was in graduate school working on his Master’s in Business Administration while working as a financial analyst full time when the symptoms began to manifest. So, he took his primary care doctor’s advice to go to a neurologist, and after getting an MRI, the scan revealed lesions, which served as grounds for his diagnosis.

“My initial reaction was confusion,” Buckelew told Medical Daily. “I look at the MRI and see these white spots all over them and say, ‘What does that mean?’ My father reached out to somebody who he knew had MS and they immediately told him I should be going to a specialist, thankfully. It was over the course of six to eight months where I was with a general neurologist not getting the support that I really needed.”

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