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Walking because you still can: Important MS fundraiser steps out
By J. David Barron, dbarron@starlocalnews.com
It's been said in some circles that girls are the lucky ones. That surely wasn't uttered in a circle comprised of people suffering from multiple sclerosis.
MS is a debilitating disease that affects the nervous system. Depending upon where the lesions are in the brain, the person suffering from the random-striking disease will be forced to suffer memory loss or dizziness, extreme fatigue, loss of balance, or the inability to even adequately communicate. Or all of those symptoms. And more times than not, the person suffering is a woman.
Flower Mound resident Marjorie Winston is one of those women.
"My father's sister, who I was named after, had it, and for me to tell him that I had it after he named me after her was a tremendously difficult thing for him," Winston shared. "I don't think I realized the magnitude of it until after I told him."
Winston was forced to go on long-term disability in 2012 due to resulting cognition issues. She's been raising a son since her nightmare began in 2007, and while that remains her primary duty and love, Winston has taken on the crusade to raise awareness for MS as much as is humanly possible - because that is the real problem, she feels.
March 2 marks the 25th annual Walk MS: Dallas, a 1-mile or 5-kilometer route slated to start at 8 a.m and step out from Addison Circle Park. The park is located at 15650 Addison Road in Addison. Winston, God willing, will rise to participate in this year's walk with a group of family, friends and former colleagues that calls itself "Team MS Kateers." Along with thousands of others, Winston's team will step out on the walk with a swagger.
"You never know what any day is going to hold," Winston said. "One day you may feel fine and the next day you can't get out of bed. Some days you can't see. Your vision is impaired where you can't drive. And some days you can't put a sentence together."
Winston then related what she feels is the biggest challenge in eradicating the disease, if that can be done. Then again, without the proper information, that possibility has almost a zero chance of happening.
"The other challenge for folks like me is there are supposedly 400,000 people in the U.S. who struggle with MS, but that number is based on a census from 1987," Winston said. "That figure hasn't been updated in almost 30 years, yet they say every hour someone is diagnosed with MS!"
It's at this point that Winston has to do her best not to come across as incredulous.
"Because they are still going by that outdated figure, it seems like such a minimal number of Americans are affected by it," she said. "Therefore, the MS patients lose out on the government funding that affects the opportunities for research and for things that can affect the quality of life for patients. That is absolutely frustrating."
At times, living with the disease goes way beyond frustrating, becoming more like criminal. Winston said the costs for one of the necessary medications runs $4,600 a month.
"For someone without insurance, that's abysmal. Even for me with my insurance, I have a new deductible because it's a new year, and for the first 30 days with my insurance it's still going to cost $2,600. That's crazy!
"Those are things in my opinion that could be affected and remedied if we had an accurate number of how many people had the disease," Winston said. "Because people without insurance can't afford almost $5,000 a month for one medication."
Winston said that when she emailed the CDC (Centers for Disease Control and Prevention) and received back that number the CDC said was derived from a medical census in 1987, as Winston noted, she was stonewalled regarding her resulting inquiry as to why the number of people suffering from MS in the country was still listed at 400,000.
"We're not asking for names, just to know what are the latest figures of people suffering from this disease," Winston said. "I just feel like so much progress could be made if we were just using relevant numbers. Not up-to-the-minute numbers, because those are impossible to get, but certainly some data that's not nearly 30 years old.
"I think they would be shocked to find out just how many people are actually having to live with this disease on a daily basis."
That's why Marjorie Winston is praying for one of those good days this Saturday. She very much wants to be able to participate in her fifth consecutive Walk MS: Dallas. She is driven to use her life to make as much of a difference as she can for those whom she knows are suffering, and even perhaps more than they need to be.
In the meantime, she continues to raise her son as a single mother with as little heartbreak as she can struggle not to feel.
"You know you never want your children to see you when you can't do the things for them that you'd like. I know it's hard for him even though he's a teen to see me not be able to function, or be able to talk or even be able to get out of bed."
Money raised from the event will go to support life-changing programs and cutting-edge research. Anyone interested in registering as an individual, starting a team or joining a team to help meet the Dallas area goal of raising $640,000 for this year's Walk can go online at <http://walktxh.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?fr_id=19642&pg=entry>.
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