Event to raise awareness of fickle disease
Katheryn Houghton Daily Inter Lake | Hagadone News Network | UPDATED 8 years, 8 months AGO
On patients’ good days, multiple sclerosis can be an invisible disease that eases into the background of people’s thoughts and concerns. On the bad days, the disease can leave its host crippled.
Stephanie Tinney was 35 when she was diagnosed with multiple sclerosis. Initially, it appeared as numbness that traveled down her leg while her eyes blurred and her arms itched.
In the 16 years she has had it, Tinney has become accustomed to the needle sensations that sometimes take over parts of her body, from her legs to her pinky. Sometimes she’s suddenly tired. When it’s hot out, she slurs her words, stumbles and drops what’s in her hands.
“People can understand a broken bone, even cancer,” Tinney said. “But MS is a lot more nebulous. Either it doesn’t show itself at all or people look ‘weird’ or ‘different.’ Most people don’t understand what this is or the embarrassing symptoms it comes with.”
Multiple sclerosis is a chronic, unpredictable disease of the central nervous system, which is made up of the brain, spinal cord and optic nerves. According to the National Multiple Sclerosis Society, it’s thought to be an immune-mediated disorder, where the immune system attacks healthy tissue.
While there has been an increase of medications that can slow the disease’s growth and severity, there’s still no cure.
The society estimated there are more than 2.3 million people affected by multiple sclerosis worldwide. But because the Centers for Disease Control and Prevention don’t require U.S. physicians to report new cases, and because symptoms can be invisible, the prevalence of multiple sclerosis can only be estimated, according to the society.
Today, Tinney will walk a mile through Lawrence Park in Kalispell surrounded by family and friends wearing bright orange and green to put her disease in the forefront.
This is the first time Walk MS, a national charity walk, has reached Kalispell. The event seeks to raise money to find a cure for multiple sclerosis and to raise awareness on the various masks the disease can wear.
Kristina Kirschenmann, with the Montana branch of the National Multiple Sclerosis Society, said since Walk MS began more than 25 years ago, donors and sponsors have raised more than $920 million to fund research to cure the disease and programs to assist people affected by it.
“It’s almost surprising Kalispell hasn’t had this event before, so we’re excited to get it off the ground,” Kirschenmann said.
Kirschenmann said the event is something many people impacted by multiple sclerosis are pulled to. For years she’s heard of people traveling out of state to places such as Spokane or Seattle.
“It just seemed like something our community should offer,” she said.
Dr. Brett Lindsay, a neurologist at Neuroscience and Spine Institute of Kalispell, said it was important to have a local walk in Montana, both to create a feeling of support for Montanans facing the disease and to remind people of the importance of looking for a cure.
“This event generates much-needed money for this really common disease,” he said. “While it’s not talked about a lot, virtually everyone knows someone with MS — it needs to remain a priority.”
When Tinney was first diagnosed, she said it wasn’t the symptoms she was worried about. It was the uncertainty of her future.
“I knew I wanted to be a wife and a mom. But I wondered how I would explain this to a husband one day — or could I have kids? Would they have MS?” she said. “Looking at me, you wouldn’t know the struggles I face, and I’m a lucky one.”
Tinney married the man she loves and is a mom to an 8-year-old healthy boy. She doesn’t need a cane or a wheelchair — in fact, she’s training for a marathon for her 50th birthday. But she wonders how long she will be able to run and whether her son will ever develop the disease. She avoids warm climates that pull out her symptoms.
“This walk, it’s a great event for fundraising and getting the word out, but it’s also a chance for a community to come together that often feels isolated.”
Since Heidi Bowker, 37, was diagnosed with multiple sclerosis at 32, she has learned not to wonder what her disease will look like in the morning — if it would have worsened overnight.
“Well, at least I try not to focus on it,” she said. “But it’s always a little bit in the back of my mind, that it can change in the blink of an eye.”
Bowker knew something was off when she lost peripheral vision in her left eye. Three weeks later, she had an MRI and a diagnosis she never expected.
Bowker said she finds support from her family, friends and her faith in God. She will participate in today’s Walk MS surrounded by 30 people who have watched her live with the disease.
“Sometimes I almost think unless you’re directly affected, you don’t really think about MS,” she said. “We’re doing this walk because we want to see a cure for this, we have the hope that it could happen. And that feeling, next to people supporting you, it’s uplifting.”
The walk, a free event, will take place in Lawrence Park. Registration will take place at 9 a.m. and the walk will begin at 10 a.m. For more information, visit http://goo.gl/KANKHy, call 1-855-372-1331 or email fundraisingsupport@nmss.org.
Reporter Katheryn Houghton may be reached at 758-4436 or by email at khoughton@dailyinterlake.com.
ARTICLES BY KATHERYN HOUGHTON DAILY INTER LAKE
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