by Britt Aamodt
Special to the Star News
In 2000, Laurie Hanson woke up numb from the knees down. She didn’t think anything of it. Hanson is an avid horsewoman with quarter and Arabian horses grazing the pasture on her two acres in Zimmerman.
“I just thought I’d overdone it with the horses,” she said. “Working with horses is hard work.”
But then not too long after, Hanson—mother of four, wife, horse lover—had numbness from the waist down. Whatever was happening to her body was spreading.
She went to see her general practitioner who referred her to a neurologist. The neurologist called her in for a follow-up. Hanson was told she had multiple sclerosis.
Did she know what MS was?
“Oh, goodness no. The only time I’d heard of multiple sclerosis was when my kids were young and they sold books for Book-A-Thon, which was a program for MS,” she said.
Very quickly, Hanson learned as much about a complicated medical topic as she knew about horses, and she’d devoted her life to the four-legged beauties that had been her passion since her childhood in Kentucky.
March 14–20 marks what people in the multiple sclerosis community call MS Awareness Week, a whole week devoted to getting the word out about a typically progressive disease that damages the sheaths of nerve cells in the brain and spinal cord.
Awareness, said Hanson, involves staffing information tables, wearing MS shirts, wearing MS wristbands and simply talking to people about a condition that, despite its impact, remains a mystery to the medical establishment.
And a mystery to many, who like Hanson, don’t know what MS is until a hospital visit confirms they have it.
According to figures compiled by the National Multiple Sclerosis Society, there are approximately 400,000 people in the United States and 2.1 million people worldwide affected by the disease. Symptoms of MS can include fatigue, numbness, loss of balance, pain and emotional changes, among others.
The disease can manifest in either of two general ways. The relapsing-remitting variety comes and goes, with stretches of faint or reduced symptoms interrupted by flare-ups. Progressive MS is characterized by slowly worsening symptoms.
But even people with relapsing-remitting MS can see it suddenly convert to progressive MS, called secondary-progressive in these cases.
Hanson has remitting-relapsing MS. The uncertainty of never knowing when a flare-up might occur or if her condition will develop into secondary-progressive takes an emotional toll, she said.
That’s why, early on, she contacted the National Multiple Sclerosis Society (NMSS) and why, since 2000, she has participated in NMSS-sponsored groups.
“The groups are helpful because, even though I have a wonderful support system at home, it’s nice to talk to people who are also living with MS and know about the different things you go through,” said Hanson, who is co-facilitator of her group in Princeton.
Minnesota chapter clubs and groups are just one of the many programs the organization provides to people living with multiple sclerosis in Minnesota and western Wisconsin.
Groups are all about relationships and community. Groups vary in purpose — some are social in nature while others focus on providing education and information. Some emphasize camaraderie and mutual support and others value personal insight and growth.
Minnesota Chapter clubs provide a forum for people with MS to come together on a regular basis to engage in and celebrate a shared hobby, activity or interest.
There are also groups for sufferers and their families. MS doesn’t limit its effect to the sufferer. Families and friends are pulled in, when loved ones can’t get out of bed or even walk on their own.
“I used to wonder about those people who park in handicapped spaces and then walk inside a store,” Hanson said. “I don’t wonder anymore. I know how hard it can be sometimes to walk those short distances.”
MS Awareness Week is sponsored nationally by the NMSS. The society was formed in the 1940s when Sylvia Lawry put a letter in the New York Times asking for responses from anyone who’d recovered from MS. Her brother had MS. Instead, she was flooded with letters from people who also sought information and help. Lawry was mobilized to create the society that has since helped generations of individuals and spawned an international organization, the Multiple Sclerosis International Federation.
People like Hanson, her husband, Glenn, and members of her family are grateful.
The Zimmerman woman still cares for her horses and rides. She has passed on her passion for horses to some of her children, so some of the horse care duties can be shared.
Laurie still rides, too. She loves her ventures into the Sand Dunes State Forest in Orrock. When she climbs up on one of her horses, she says her problems seem to melt away.
When her feet are back on the ground, she has other sources of support to turn to, thanks family and friends and to her involvement in the MS Society.
What is multiple sclerosis?
Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that interrupts the flow of information between the brain and the body and stops people from moving. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted.
Who gets MS?
Most people with MS are diagnosed between the ages of 20 and 50, although people as young as 2 and as old as 75 have developed it. At least two to three times as many women as men are diagnosed with the disease, and there are an estimated 8–10,000 children under the age of 18 who live with MS. MS occurs in most ethnic groups but more commonly among Caucasians of northern European ancestry. In all parts of the world, MS is more frequently observed at northern latitudes farther from the equator and less frequently observed in areas closer to the equator.
How many people have MS?
More than 10,000 people in Minnesota and western Wisconsin, more than 400,000 in the United States and 2.5 million worldwide have MS. Each week, approximately 200 people are diagnosed with the disease — one person every hour.
What are the symptoms of MS?
Symptoms of MS vary greatly from person to person and from time to time in the same person. For instance, one person with MS may experience abnormal fatigue and another person may have severe vision problems. While one person with MS may have loss of balance, muscle coordination or tremors — making walking and everyday tasks difficult to perform — another person may have slurred speech and memory issues. These problems may be permanent or may come and go.
What causes these symptoms?
In MS, symptoms result when inflammation and breakdown occur in myelin, the protective insulation surrounding the nerve fibers of the central nervous system (brain and spinal cord). Myelin is destroyed and replaced by scars of hardened, “sclerotic” patches of tissue. Some underlying nerve fibers are permanently severed, and the damage appears in multiple places within the central nervous system. Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals.
Is MS fatal?
No. MS is not a fatal disease, except in rare cases. But people with MS may struggle to live as productively as they desire, often facing increasing limitations.
Does MS always cause paralysis?
No. The majority of people who live with MS do not become severely disabled. Two-thirds of people remain able to walk, though many will require an aid, such as a cane, and some will use a scooter or wheelchair because of fatigue, weakness or balance problems.
Is MS contagious or inherited?
No. MS is neither contagious nor directly inherited, although studies indicate genetic factors may make certain individuals more susceptible to the disease. While the risk of developing MS in the general population is 1/750, the risk rises to 1/40 in anyone who has a close relative (parent, sibling, child) with the disease. In families in which several people have been diagnosed with MS, the risk may be even higher.
Why is MS so difficult to diagnose?
In early MS, elusive symptoms that come and go might indicate any number of possible disorders. Some people have symptoms very difficult for physicians to interpret, and these people must “wait and see.” While no single laboratory test is available to prove or rule out MS, magnetic resonance imaging (MRI) is a great help in reaching a definitive diagnosis.
Can MS be cured?
Not yet. There are now FDA-approved medications that have been shown to “modify” or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging. (Editor’s note: To learn more about MS, visit www. http://www.nationalmssociety.org).
What medications and treatments are available for MS?
The National Multiple Sclerosis Society recommends a person consider treatment with one of the FDA-approved “disease-modifying” drugs as soon as possible following a definite diagnosis of MS with active or relapsing disease. These drugs help to lessen the frequency and severity of MS attacks, reduce the accumulation of lesions (areas of damage) in the brain and may slow the progression of disability.
In addition to drugs that address the basic disease, there are many therapies for MS symptoms such as spasticity, pain, bladder problems, fatigue, sexual dysfunction, weakness and cognitive issues. People should consult a knowledgeable physician to develop a comprehensive approach to managing their MS.
What are the different types of MS?
In an effort to develop a common language when discussing, evaluating and treating MS, the National MS Society conducted an international survey among scientists who specialize in MS research and patient care. Analysis of the responses has resulted in the following four definitions of disease categories:
Characteristics: People with relapsing-remitting MS experience clearly defined flare-ups (relapses) or episodes of acute worsening of neurologic function. These are followed by partial or complete recovery periods (remissions) between attacks that are free of disease progression. Frequency: Most common form of MS at the time of initial diagnosis. Approximately 85 percent at onset.
Characteristics: People with primary-progressive MS experience a nearly continuous worsening of their disease from the onset, with no distinct relapses or remissions. However, there are variations in rate of progression over time, occasional plateaus and temporary minor improvements. Frequency: Relatively rare. Approximately 10 percent at onset.
Characteristics: People with secondary-progressive MS experience an initial period of relapsing-remitting disease (see above) followed by a steady worsening disease course with or without occasional flare-ups, minor remissions (recoveries) or plateaus. Frequency: If left untreated, 50 percent of people with relapsing-remitting MS develop this form of the disease within W (??) years of initial diagnosis and 90 percent transition within 25 years. It’s too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to secondary-progressive MS.
Characteristics: People with progressive-relapsing MS experience a steady worsening disease from the onset but also have clear acute flare-ups (relapses), with or without recovery. In contrast to relapsing-remitting MS, the periods between relapses are characterized by continuing disease progression. Frequency: Relatively rare. Approximately 5 percent at onset.
The Minnesota Chapter represents more than 10,000 people with MS in Minnesota and western Wisconsin. They provide countless resources for people living with MS and their families, friends and care partners, including:
•Licensed social workers, who connect people with MS to resources and assist them in working with insurance companies, applying for programs, locating appropriate housing, discovering ways to manage the disease, finding solutions to family and employment issues, learning about Social Security, and more;
•Eighty-three MS clubs and groups across the chapter area;
•Thirty-two exercise and wellness programs;
•Independent Living Grants, which provide financial assistance to families in the purchase of products and services such as medical equipment, aids for daily living, home and auto modification, chore services and respite care for care partners;
•Emergency financial assistance to help steer families out of crisis by helping to pay for things like utility bills and mortgages;
•Educational programs about research, treatments and symptom management;
•Getaways and camps for fun, relaxation and friendship;
•Programs for youth and teens who have a parent or close relative with MS;
•Scholarships for students who have a parent or close relative with MS;
•Community grants for MS partner clinics;
•Social and educational opportunities and support for care partners, friends and families of people with MS; and
•Advocacy efforts for MS-related issues, including legislation to include an income tax check-off that would raise funds for MS research and programs in Minnesota, working to minimize budget cuts that would hurt people with MS and other disabilities; and training and mobilizing its network of grassroots activists to raise awareness, share their stories and make changes for people with MS.
Learn more at MSsociety.org.