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A Day In the Life: Multiple Sclerosis
According to the National Multiple Sclerosis Society, a total of 2.1 million people worldwide suffer from multiple sclerosis. Multiple Sclerosis (MS) is an autoimmune disorder of the central nervous system (brain and spinal cord). According to the NMSS, “the immune system incorrectly attacks the person’s healthy tissue.” MS can leave you with impaired vision, numbness, fatigue, cognitive issues, decreased coordination, poor balance, halting speech and muscle spasms. The disease can be mild, and non-progressive, but can slowly get worse, or get worse rapidly. “Diagnosis of MS is usually between 20 and 40 years of age,” sites the Multiple Sclerosis Foundation.
For Dave Bexfield of Albuquerque, NM, it began with lightening-like flashes in the far corner of his eyes. Within a week this annoyance stopped, but his life would forever be changed. On September 26th, a month after his 36th birthday, Bexfield experienced more strange symptoms: “I went to scratch my chest and I couldn’t feel anything. Then, over the course of the next hour my entire side went numb,” describes Bexfield. After a trip to the emergency room and suspicion of multiple sclerosis, Bexfield was sent to a neurologist who, after more testing, officially diagnosed him with MS.
When it comes to getting diagnosed, Bexfield describes people falling into one of two categories: “Relief at discovering what was causing all of those weird symptoms of the years, or totally freaking out.” For Bexfield it was the latter. He lost 10 pounds in the month following his diagnosis, and rarely slept. His days were filled with worry. Since then, Bexfield steered to a more positive course.
So, what is a typical day like for someone with MS? Today, we talk to Dave Bexfield, head of ActiveMSers.org, a website to help motivate and inspire those with MS to stay active physically, intellectually and socially.
Walk me through your day.
Dave: A typical day with MS is atypical. Each one of us will experience our own hurdles with this disease. My biggest challenges are with my legs, and general lower body weakness and numbness. Before I get out of bed every morning I spell the alphabet with each foot to improve coordination. Around the house I use a cane, and when I go out I use a pair of forearm crutches. I make a beeline to the gym most days and exercise vigorously for over an hour. I always dedicate at least 15 minutes to stretching to help keep my spasticity in check. In the evenings I cook dinner for my wife using my walker to conserve leg strength. I take my time and make sure all of my kitchen prep work is complete before I start cooking—it keeps the stress down and helps ensure I don’t forget an ingredient. On the weekends I’m in town I’ll hike, museum hop, catch a show or hang with friends. But I have to follow a few rules: always note public restrooms, wear protection (urgency is a common issue with MS) and ration my walking so I don’t get too taxed. I love to travel and have been to dozens of countries, many since being diagnosed. Our next destination: Russia!
Dave Bexfield: “Be active, stay fit, and keep exploring!”
Dave: Carrying things! When your walking is iffy, going through a buffet line solo is not the best idea. Raining? Forget walking and carrying an umbrella. I now always use insulated coffee mugs that won’t break or spill if I drop them.
Have you had any recent triumphs relating to your MS?
Dave: My MS was unusually aggressive. And I purposely used the past tense in that sentence. In 2010 I participated in a novel NIH-sponsored clinical trial that reset my immune system. Since then I have been on no MS medications and I’ve improved in virtually every measurable area. This winter, for the first time in four years, I snowboarded. No it wasn’t pretty, but it was pretty awesome. There’s lots of cutting edge and exciting research in the MS pipeline. My story shows that there is hope. There is most definitely hope.
Has changing your diet helped your MS symptoms at all with inflammation?
Dave: I’ve always eaten healthily and kept my portions modest, so I have not changed my diet in any way. I still enjoy my Cheetos, my hoppy beers, and my squares of dark chocolate with sea salt—in moderation. Well, usually in moderation. That said, if any scientific study ever finds conclusive evidence that a certain diet works for MS, I would commit wholeheartedly.
And lastly, what tips do you have for those recently diagnosed with MS?
Dave: Personally, I found that having the right mental attitude made all the difference. No, attitude will not cure diseases nor will it fix the unfixable. But without it — without finding that right mental space to more forward — life with MS will be more difficult. And stick to ActiveMSers.org’s motto: Be active, stay fit, and keep exploring!
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Multiple Sclerosis Myths
Multiple sclerosis, an autoimmune disorder in which the body’s immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system, affects anywhere from 250,000 to 350,000 people in the United States. Symptoms can vary widely from person to person, but generally include: vision problems, decreased attention span, muscle spasms, numbness, problems with general mobility, and a host of other indicators.
Schoser is not alone in her desire to help out: thousands of people participate in Walk MS throughout the year in over 600 locations nationwide, raising money to fund research and spread awareness about MS. Though many people have heard of multiple sclerosis, many do not know much about this chronic condition. Read on to separate the fact from the fiction:
1.Multiple Sclerosis is Fatal: David Bexfield, founder of ActiveMSers.com, says that when he started telling friends and relatives that he had MS, many related horror stories of distant relatives who had died from the disorder. Although there is no cure for MS, with the help of therapies, those with MS generally have normal or almost normal life expectancies.
2.If You Have Multiple Sclerosis, You Will Definitely Need a Wheelchair: “I think people always assume that if you have MS, you either can’t walk or someday will not be able to walk,” says Stephanie Abrams, a 27 year-old entrepreneur who blogs about her experience living with MS. “That’s definitely the biggest misconception.” Abrams is right: few people living with MS need full-time wheelchairs.
3.Multiple Sclerosis Only Affects the Elderly: Wrong. Multiple Sclerosis is most often diagnosed in people between ages 20 and 40, though can be seen at any age, according to the U.S. National Library of Medicine. The Multiple Sclerosis Association of America’s website states that MS is the most common neurological disorder diagnosed in young adults.
4.Multiple Sclerosis Must Be Inherited: While having a family history of multiple sclerosis increases your chances of acquiring the disorder, most experts believe that environmental and genetic factors influence a person’s chance of acquiring MS. Women are more than twice as likely to acquire the disorder, while populations living in temperate climates far from the equator have a higher incidence of MS. White people are also more likely to acquire MS.
5.Multiple Sclerosis Symptoms Are Only Physical: “People often believe that MS only concerns physical symptoms and that everyone is in a wheelchair,” says Jeffrey Gingold, award-winning author and MS advocate. “In fact, approximately 65% of the MS population is also faced with cognitive challenges—to one degree or another. It’s like being in an invisible wheelchair.” For Gingold, multi-tasking is difficult, and he struggles to remember familiar details, information, places, or faces. “ ‘One thing at a time for Daddy’ is often heard in our home,” says Gingold. “When I am shown an article in the newspaper, handed the phone to talk, or asked a simple question about dinner, I slam into a brick wall of thoughts…For most people afflicted with by this disease, they will face a second, silent struggle: stealth symptoms that don’t fit the anticipated box of physical symptoms associated with MS… ‘Looking fine’ is a cruel illusion.”
Abrams, Gingold, and Bexfield are all doing well these days. Abrams now heads a social media marketing agency in New York City, while Gingold is an outspoken volunteer advocate and has written about his experiences in his book, Facing the Cognitive Challenges of Multiple Sclerosis. After his own diagnosis in 2006, Bexfield says he was “determined to do something positive,” and founded ActiveMSers.org. “As a daily exerciser, avid athlete, and intrepid world traveler, I built the not-for-profit website to help motivate and inspire others with the disease to stay active physically, intellectually, and socially…Why is this so important? Because multiple sclerosis is beatable someday.”
Gingold also has encouraging words for those struggling with MS: “Don’t lose sight of the fact that while there is no cure for MS yet, we can slow down progression and enable patients to live large and vital lives. There is real hope.”
Shoser reflects this hope in her enthusiasm about Walk MS: “It’s about compassion for others,” says Schoser. “It’s about raising awareness for a disease that strikes individuals in the prime of their life. It’s about doing much more than you have to in life to make someone else’s life better. Most importantly, it’s about people, about your community, your neighbors, your family, and your friends.”