The Grapevine

World Multiple Sclerosis Day 2016: How Being Independent Helps People With MS Live A Better Life

Multiple Sclerosis
Regaining independence after being diagnosed with multiple sclerosis is a journey to discovering what works for the individual's goals. Photo courtesy of Dan Kitwood/ Getty Images

World MS Day focuses on uniting the roughly 2.5 million people around the world who suffer from multiple sclerosis (MS) around the goal of spreading new awareness and empowerment through the sharing of solutions and experience. This debilitating neurological disease triggers the immune system to attack and eat away at the protective layer covering nerve fibers in the brain, spinal cord, and optic nerves. By helping others understand the unpredictable and complex nature of the disease, which is primarily diagnosed in young adulthood, patients can take critical steps to achieving 2016’s theme: independence.  

Every year, another 200 people are diagnosed with MS in America. Although the disease does not have an identified cause or cure, sufferers commonly experience symptoms like vision loss, pain, fatigue, depression, forgetfulness, and impaired coordination. While there are currently 13 FDA-approved drugs available for the long-term treatment of MS, they have only been shown to reduce the frequency and severity of MS flare-ups, along with the potential to slow the disease’s progression.

According to the National Multiple Sclerosis Society, experts theorize that MS strikes genetically susceptible people who trigger the disease by one or more environmental factors. Various links have been found to increase the risk of developing MS, such as high-fat diets, vitamin D-deficiency, and cigarette smoking.

The abnormal response from the immune system leaves scar tissue throughout the brain, giving doctors who specialize in MS  the opportunity to diagnose severity through magnetic resonance imaging (MRI) scans. When any part of the nerve’s protective coating, known as the myelin sheath, is damaged or destroyed, the nerve messages sent from the brain to the spinal cord (or vice versa) are distorted, which is what causes a wide array of symptoms.

Because MS is a lifelong disease that can leave sufferers in a wheelchair, it’s important to take care of the body to avoid triggers that’ll spark an MS episode. Extreme fatigue is a common symptom that can last for days, weeks, or even months if MS patients don’t follow a healthy diet and abstain from cigarette smoking, alcohol, stress, and sun exposure.

Investing In Independence

The National Multiple Sclerosis Society has aligned with World MS Day to embrace the theme of independent living by launching the “Together We Are Stronger” campaign, which invites people to upload their story to share with the world. In one case, Amy M., a former dancer who was diagnosed with MS in 1997, began tripping and falling even though she had been dancing since she was 4 years old.

Today, she still does choreography for dancers with disabilities. But to live out the feeling of dance, Amy watches video of a dance routine recorded by another dancer with a 360-degree camera. The young dancer says she hopes to give Amy the feeling of “transcendence.”

“I dream sometimes and I see that,” Amy said, referring to the camera recording she watches to emulate the feeling of dancing. “Every day you just have to say to yourself, I can still do this.”

Despite the hardships of the disease, many patients who live with MS can manage their symptoms and maximize their independence to invest in meaningful, quality lives. By exploring their options, MS patients may benefit from complementary and alternative medicine, such as acupuncture, meditation, massage, yoga, and dietary supplements, such as vitamin D, C, and B-complex.

According to the report “Maximizing Independence,” addressing patient’s isolation is integral to keeping them connected with the outside world. This can be achieved by ensuring access to technology, staying mobile, attending adult-day programs, and looking into home care services and skilled nursing visits. Many of this is made possible by the 1999 Olmstead Supreme Court decision, which enacted the civil right for people with disabilities to live in the least restrictive environment possible.

Beyond a regimen, improving day-to-day life by incorporating simple routines, such as day journals, can help. Oftentimes, MS patients switch their medications to determine which ones work best for their lifestyle, symptoms, and severity. Because of this, it’s helpful to keep a record of MS symptoms in order to track how patients feel and ultimately determine if the disease is progressing or not. While there is still no cure, treatment options vary, giving patients the opportunity to explore, through trial-and-error, how to manage their symptoms to live out the healthiest, most independent life possible.

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