Faces of MS: Event highlights debilitating disease, research efforts
BEMIDJI - Nicole Jackson didn't pay much attention to the symptoms when they first appeared.
Instead, Jackson's focus was on raising her three children, ages 9 to 12, and tending to their busy lives.
Carson Stensland also found the effects gradual but debilitating, forcing him to leave his job as a group home administrator.
And Ann Hayes internalized the symptoms, even going as far as to blame herself, to the changes she experienced.
All three have learned to live with multiple sclerosis, a chronic and often disabling disease that attacks the central nervous system.
Symptoms of MS, as it's commonly known, can vary significantly from person to person, and range from mild, such as numbness in the limbs, to severe, with paralysis and vision loss possible.
"I feel this disease is still fairly invisible to people," says Hayes, owner of Brigid's Cross Irish Pub and Restaurant in Bemidji. "With MS, it's not an obvious disease. It can start as quietly as causing you to drop words in a sentence."
According to the National Multiple Sclerosis Society, about 400,000 people in the U.S. have MS. Each week, 200 people are diagnosed with the disease.
And the prevalence of MS appears to be greater in northern climates.
Currently, the Society's Upper Midwest Chapter serves 17,000 people living with MS in Iowa, Minnesota, North Dakota, South Dakota and parts of Wisconsin and Nebraska.
The Society aims to help people MS by funding research, driving change through advocacy, facilitating professional education and providing programs and services that help people with MS and their families.
One critical fundraiser is organized walk events, which also create awareness.
On Sunday, Bemidji will be one of 18 host sites in Minnesota for an MS Walk event. Registration starts at 10 a.m. in the Gillett Recreation Center on the Bemidji State University campus.
The Bemidji mother of three ignored the early symptoms of MS, which started with numbness in her left arm. Soon the tingling stretched into her shoulder and back.
"I didn't pay much attention to the numbness because I was so busy with them," Jackson, 47, says, referring to her children.
At the time, Jackson says the symptoms were a nuisance. Eventually, though, she visited a doctor, who ran an MRI, or magnetic resonance imaging.
That's when Jackson learned there were lesions on her brain and cervical spine. Along with the discovery 12 years ago came the diagnosis of MS.
"It shocked me because there was no one in my family at that time that had it," Jackson says. "I honestly couldn't believe it. At first I thought it was a mistake."
In fact, anyone can develop MS, but there are some patterns, according to the MS Society. More than twice as many women as men have MS. Studies suggest that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited.
It can take years for someone to learn he or she has MS, but it was clear in Jackson's case.
Coincidentally, Jackson, who grew up in Roseau, knew a bit about MS. Two months before her diagnosis, Jackson attended a support gathering with her best friend, who also recently received the same diagnosis.
The news of her own diagnosis scared her.
"I'm still scared 12 years later," says Jackson, who coordinated this year's MS Walk in Bemidji with her husband, Kevin.
She's determined to keep an upbeat and positive outlook.
"I couldn't let this affect my kids," Jackson says. "They were so young I couldn't let it affect them."
But she's noticed changes in other ways.
Jackson cut back on working, now keeping part-time hours as a receptionist for Paul Bunyan Broadcasting. Sometimes she struggles to walk from her car to the office or her home.
"I have to be three times more organized than I used to be," says Jackson, adding she relies on Post-It notes to remember some basics. "My strength isn't what it used to be."
She credits the support of her husband, children and co-workers for her determination.
"I have three kids that are going to have families of their own," Jackson says. "(MS) doesn't control me... I can't let it take over my being."
Now fully retired, Stensland, 56, has twice relearned to walk.
This spring, he found himself hospitalized due to MS symptoms. He faced leaving the hospital in an electric wheelchair after weeks.
"MS is a real devastating disease for a number of people," says Stensland, who has lived with MS for 27 years. "It's an up-and-down disease. It's hard to plan ahead."
For the former group home administrator, the symptoms were mild to start. After five years, though, MS began affecting him mentally and physically.
"When I got hit, it knocked me out of everything," says Stensland. His memory suffered and he couldn't perform some of the maintenance duties he enjoyed.
His MS diagnosis came in 1987 and he went on disability by 1994, when symptoms hit hard. At one point, Stensland, an outdoors lover, lost the ability to walk and move his legs. He suffered reduced strength in his arms.
"I didn't ever expect to get out of a wheelchair again," says Stensland. "We ended up starting from scratch."
He credits the support of his wife, Barb, children and prayers from concerned friends and family in helping him through the process.
When he landed in the hospital again this spring, Stensland faced leaving again in a wheelchair.
Shortly after his discharge, though, Stensland started walking.
But he knows his limitations and some of the things he simply can't enjoy, like golfing.
"My real love is carpentry work," Stensland says. "I would be a full-time carpenter if I could."
He now considers himself a tinkerer because he doesn't have the strength or stamina to take on major projects.
Hiking and biking also are curtailed. "I love the outdoors but my ability to walk is limited," Stensland says.
Again, he credits Barb, his wife of 36 years, for keeping him positive.
"She's been there every bit of the way," Stensland says. "She picks me up when I'm down."
Years ago in her neighborhood, Hayes remembers a woman who always appeared to be sitting on her porch as the two families' children often played together.
More than 20 years ago, Hayes knew her neighbor had MS. But she didn't know what that meant.
"Sometimes you don't get it until you get it," Hayes, 54, says.
The bar owner now knows what her former neighbor went through.
Diagnosed with MS in 2007, Hayes had gone through a battery of tests, including nine tests for Lyme disease, to determine the source of her fatigue.
She frequently participated in local running events. Disappointed in the results, Hayes says she believed she wasn't working out enough. So she exercised more.
She couldn't shake the fatigue.
"It's that kind of fatigue that just can't be shaken," says Hayes, adding that MS has affected her balance and ability to climb stairs.
MS didn't stop with her ability to run, though.
"I am a musician, or I was," says Hayes, formerly first chair violinist in the Bemidji Symphony Orchestra. "I got to the point where I couldn't execute the solos."
Now she hopes people will become more accepting and aware of the disease.
"I'm asked all the time, 'What did you do to your knee?'" Hayes says.
"It makes people uncomfortable to realize it's not temporary. I don't intend for people to be uncomfortable about it. I want them to know more."
She also has a message for those living with MS, or those who know someone who has the disease.
"I don't want people to think if they have MS that they contribute any less to the community."
This Sunday, Bemidji will be one of 18 host sites in Minnesota for an MS Walk event. Participants can register at the door starting at 10 a.m. in the Gillett Recreation Center, 220 19th St. NE, on the Bemidji State University campus.
Teams can walk inside the center or outdoors. The fundraiser provides money for educational and support programs across the area for people with MS and their caregivers, families and friends.
Bladder and bowel dysfunction
Spasticity (leg stiffness)
Chronic aching pain
Mild cognitive and memory difficulties