/ Articles / March is MS Awareness Month
Jeannie Sykora was young, pregnant and living her best life when a frightening unknown struck: Her body went entirely paralyzed. The only part she could move were here eyes.
Sykora was quickly hospitalized. It would take weeks of intensive treatment before Sykora was released, many days of which she didn’t know when — or if — she would ever recover. The culprit? Multiple sclerosis. It was the most difficult and consuming attack to date for the now-60-year-old Minocqua woman. Over the years, her secondary-progressive MS has impacted her walking, fatigue and spasticity.
Sometimes Terry Stake, 67, of Lake Tomahawk, stumbles when he walks, or uses a cane. Some might think he has an injury, but that’s not the case. He also has MS.
Together, Sykora and Stake are two of the founding members of the Northern MS Association, president and vice president respectively, which has been in existence in the Lakeland area for going on three years now.
“We thought it would be great to have a support group in the area,” Sykora said.
Multiple sclerosis (MS) is a rare and unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body, according to the National MS Society. The disease affects the central nervous system — namely the spine and brain — and has no cure.
Because it varies so greatly in symptoms and presentation, MS is often a difficult disease to diagnose, and can take a number of years. Others are diagnosed rather quickly.
In Wisconsin, more than 11,000 women, men and children have been diagnosed with MS, giving the state what is believed to be one of the higher prevalence rates in the nation, the National MS Society notes.
The cause of MS is still unknown. Scientists speculate a combination of environmental and genetic factors contribute to the risk of developing MS.
The progress, severity and specific symptoms of MS in any one person cannot yet be predicted and vary widely from person to person.
Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease, the National MS Society states.
About the Northern MS Association
With the goal of hope and connection, between Sykora, Stake and Shannon Trapp, the Northern MS Association was officially established.
The mission of the Northern MS Association is to ensure no one has to experience MS alone, Sykora observed.
Further, the group works to educate themselves and the community about MS by hosing speakers at monthly meetings and having an open door policy. Anyone who has MS, or supports someone with MS, or wants to learn more is encouraged to attend.
“People are often scared when they are first diagnosed,” said Stake, who was diagnosed in his 60s, but having had symptoms for many years prior.
The Northern MS Association focuses on positive and warm outlooks, as well as making and maintaining connections and friendships as well as simply enjoying the time as a group.
“We want to talk about that, and talk about our problems, but we want to have fun, too,” Stake said.
Speakers have ranged from neurologists and physical therapists to massage and acupuncture as well as essential oils, a dietician, chiropractor and yoga instructor.
The group even hosts two parties per year — a summer picnic and a holiday gift exchange.
“It’s so important to stay positive,” Trapp said. “Mostly I want to bring positivity to anyone who needs support living with MS or anyone who loves someone with MS.”
Most members come and go as they are able, and new members pop in every so often as well, it was noted. New members are never required to speak, and everyone is always encouraged to simply listen if that’s all they wish to do.
“Our slogan is, ‘No one should do this alone,’” Sykora emphasized. “MS is a very variable thing. It’s something we all need help with, and sometimes, we can help.”
The group has grown over the years to a handful to around 25 members today. Some have MS, some are significant others of those with the neurological disease. People attend from the Minocqua, Woodruff, Arbor Vitae, Lake Tomahawk, Eagle River, St. Germain and Rhinelander areas and some from even further.
Secretary Abigail Bostwick, formerly of Arbor Vitae, was warmly welcomed into the group by Sykora and her husband, Luke.
“I had been sick a long time, but worried I didn’t look sick enough to attend a support group,” Bostwick said. “I was worried I wouldn’t fit in, or didn’t have enough symptoms on the outside to relay what MS was doing to me inside. I am so glad I got over that fear and met this group. They are truly some of the best people I have met, and I’m truly grateful to no longer be alone with my disease. These people get it. They get me.”
Types of and treating MS
While there is no cure, there are treatments aimed to slow the progression for some forms, but not all, of MS.
Most therapies target relapsing MS, the most common course, which is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks — also called relapses or exacerbations — are followed by periods of partial or complete recovery or remissions. During remissions, all symptoms may disappear, or some symptoms may continue and become permanent, based on information from the National MS Society.
Secondary primary MS follows an initial relapsing-remitting course, most people with relapsing MS will eventually transition to this course where there is a progressive worsening of neurologic function (accumulation of disability) over time without remission.
Progressive primary MS shows worsening neurologic function from the onset of symptoms, without early relapses or remissions, the National MS Society notes.
With relapsing MS, Trapp, Bostwick and member Andrea Anderson take different types of disease modifying drugs with the goal of slowing down the MS. For Sykora, there are no drugs on the market yet to do the same.
Most members of the Northern MS Group agree — the worst symptom is the debilitating and crushing fatigue that goes with the disease.
“MS fatigue is probably the most misunderstood symptom of MS,” Stake said. “You can physically see my limp. It’s so much harder when you can’t see it. It’s tough for people to understand.”
MS fatigue often stops those with the disease in their tracks, and they cannot go on with their plans, even on a quieter day, members noted.
“It’s not just being tired,” Trapp said. “It’s like having the flu, all the time. You get to a point, where you just can’t go on. It’s different than regular fatigue or not getting enough sleep.”
Most common symptoms of MS are fatigue, walking and gait issues, numbness and tingling, spasticity, weakness, vision problems, dizziness and vertigo, bladder and bowel problems, cognitive changes, emotional changes and depression.
Finding light in MS
“It’s brought a lot of new friendships into my life,” Stake said of the Northern MS Society. “It’s nice just to listen to other people, and have them help you feel better about yourself. The speakers have been really good, and I enjoy the Christmas party … just knowing there’s others going through this, it really helps.”
For Trapp, enjoying the community support and being able to talk openly about struggles and strengths with MS among people who truly “get it,” is the biggest reward of being a member.
“You can talk without feeling like you’re burdening your family or friends,” Trapp observed. “You definitely don’t have to feel alone.”
Anderson has been a longtime member of the group.
“It’s really nice to have someone who knows what I’m talking about,” Anderson relayed. “It’s stuff other people don’t understand.”
Trapp urged others to attend.
“Don’t be afraid to come,” she said with a smile. “Don’t be afraid to talk, you can always just sit and listen. It doesn’t matter what stage you’re at, everybody here has something to add to the group.”
The group also meets in a private group on Facebook where members can discuss symptoms and offer support as well as share their lives with each other.
For more information, search for the Northern MS Association on Facebook or stop in at a meeting. They meet the second Tuesday of each month at the Hiawatha Lodge, 115 Hiawatha Trail in Woodruff. Sykora can be reached at 715-617-2824 or [email protected] gmail.com or Bostwick at [email protected] Those who may want to speak or volunteer with the group also are encouraged to get in touch.
Abigail Bostwick may be reached at [email protected]