More than 300,000 people in the United States are living with Multiple Sclerosis, so chances are that you know someone who has, or is at least affected by, MS. But what, exactly, is it?
There is a great deal of uncertainty surrounding this disease. It seems everyone has heard of it, but few can define what it is.
"Isn't that something to do with your muscles?"
"It means your brain goes soft."
"I have no idea what MS is."
Those were just a sampling of some of the responses received when we asked a random sampling of citizens what they knew about the condition. Certainly, there is a great deal of uncertainty among experts as well, for MS is still a devastating disease without a cure.
In an effort to raise funding and awareness each year, The Oklahoma Chapter's Tulsa MS Walk will take place Sat., April 28. The event will start at Temple Israel located at 2004 E. 22nd Pl. and will proceed to Zink Park, while walking through Tulsa's beautiful, historic neighborhoods. Breakfast and coffee will be available by Starbucks, Krispy Kreme and Albertsons, plus an energizing aerobic warm-up before the walk.
After the walk, celebrate at the fun finish line activities with Subway providing the snacks. Funds raised from the event will help the National Multiple Sclerosis Society end the devastating effects of multiple sclerosis.
The MS Walk is one of the Society's largest fundraising events. The $281 million that has been raised since 1991 goes toward research for treatment for people living with the devastating effects of MS, as well as client programs for people with MS.
The symptoms of Multiple Sclerosis (which is, essentially, an inflammatory disease that affects the Central Nervous System), are as varied and individualized as the patients themselves. From visual problems, muscle weakness, cognitive difficulties, balance problems, coordination & speech issues to fatigue, depression and pain, episodes of MS hit without warning and can not only impair mobility, but can even cause permanent disability in severe or late stages of the disease.
Because little is known about the causes, or the cure, for the disease, many funds are needed to provide research and treatment for the patients whose daily lives are impeded by MS.
Check-in for the walk begins at 7:30am and the walk officially starts at 9am. Breakfast goodies from Krispy Kreme, Albertson's and Starbuck's coffee will be available, plus an energizing aerobic warm-up by Jazzercize before the Walk. Afterwards, celebrate all the fun finish line activities with Subway providing the snacks and Busch supplying energy drinks and water.
There will also be entertainment for the entire family, including Dave and Mark, the Gentle Jesters, Randy Sweden's Juggling, Union Cheerleaders and Safari Joe's. It doesn't matter if you wanna stroll or power walk, just have a good time--the rewards for you and those with MS will remain the same.
Valerie Russell, Development Manager for the Oklahoma Chapter of the National Multiple Sclerosis Society, said that they expect upwards of 1,100 walkers this year,(250,000+ walkers nationally) and that number counts adults and children, including those with MS who are physically able to complete the walk. Babies in strollers or pets on leashes are also welcome, though they're not included in the count unless they're taking pledges!
Russell also spoke of a program called "Champions of MS, which allows you to walk for someone who has MS. You'll wear a bandana signed by that person or in remembrance of someone, and in ideal cases, you can meet that person at the end of the walk."
Tulsan Josephine Emanuel, was diagnosed with episodic MS at age 26 (most women are diagnosed between the ages of 20-40). Her tell-tale symptom was double vision, but since she was carrying 12 hours in graduate school and teaching full-time that year, she said, "The heavy fatigue and depression just came along with the territory."
Now, when she has episodes, she still experiences extreme fatigue, but she also has balance issues and her left foot sometimes drags.
She said those have been her most common symptoms since her diagnosis. Most of the time, however, Josephine does not suffer from her MS, making her one of the lucky ones, as severe cases can sometimes confine people to the house and keep them in constant pain.
Emanuel was able to keep her job teaching Special Education for years but sometimes had to use a cane during the day and would quickly become completely exhausted, necessitating a nap every day after school.
"The major stigma of MS," she says, "is that it's an invisible disease. People think you're just fine when, in fact, you're basically disabled. You don't necessarily want special treatment, but you want people to know you're not exactly yourself when you're having an episode."
While Emanuel had no physical symptoms she could recognize before an attack, her son could apparently notice a slight change in her eyes that indicated an episode was coming on. Also, normally a positive person, Emanuel said, "I would get an inexplicable doomsday feeling, like a premonition that something bad was coming."
While research and experiments are helping medications become more effective, Emanuel described what treatment was like 40 years ago.
"The medication I was on gave me insomnia, anxiety and ulcers. I was on a number of other medications just to stop the symptoms of the MS meds," she recalled.
These days, as one of the fortunate patients, Emanuel only has to take medication when she has spells, which are coming less frequently. While she did laud the advances in treatment for the disease, Josephine declared, "prayer has had the greatest power in my life. My faith allows me to overcome and go on."
For those whose physical condition simply won't allow them to make the walk, there's still a way to get involved. Having had both a hip and knee replacement in the past 14 months, Emanuel herself will not be able to participate in the walk, but she urged others to do so.
She encouraged, "The disease needs more research, and research needs more money, and more money comes from more walkers."
Simple enough. Incidentally, walking is not the only way to help the Multiple Sclerosis Society or support the Walk. You can give a flat donation, donate time preceding and on the day of the walk, or you can be a "phantom walker," which is less scary than it sounds, collecting pledges for the Society. There are tips on the website for soliciting pledges, and there will also be prizes for the top earners, so get going.
Russell pointed out one of the unique things about the MS Walk in Tulsa, which is that almost all of the money raised goes directly to our Oklahoma Chapter, with only a small portion going into the national funds bank.
She happily announced, "The funds stay here, which means they can make a positive influence in the lives of Oklahomans quicker."
Some of the research needs include a more focused look at the brain stem, drug research to improve on or replace the four drugs currently being used to treat MS, and, of course, searching for a permanent cure for the disease.
Russell said that along with the Walk this year, the Society will be releasing a new brand and logo that promotes the idea of getting rid of MS. "We want to raise people's awareness and stamp out MS. We want to be out of a job. That's the real goal."
If you would like to join the leagues of people who want to help reach that goal and walk, volunteer or donate, visit nationalmssociety.org/OKE or (800) FIGHT-MS.
If you want to walk but cannot make the April 28 date in Tulsa, or if you just passionately dedicated to walking for MS, there will also be another walk in Stillwater the same day, April 28, and one more in Enid on May 19.
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