Posted on Mar. 18, 2015 (
Getting to a "new normal" after being diagnosed with Multiple Sclerosis (MS) is no easy task.
In fact it's a roller coaster ride that's repeated with each new flare-up or loss of ability as the disease progresses.
Megan McDaniel, mental health specialist at MultiCare's MS Center in Tacoma, has witnessed the ride with patients countless times.
"People feel so devastated at the beginning because we can't say why they developed the disease, what caused it, or how to cure it," McDaniel explains.
Nearly 15,000 people are living with MS in the Pacific Northwest — giving the region a higher incidence of the disease than almost anywhere else on Earth, according to the Greater Northwest Chapter of the National MS Society.
No one knows quite why, although the disease is far more prevalent north of the equator and in white people whose families hail from Northern Europe.
Despite our region's high rate of MS, many people don't know much about the disease.
To get the word out, the Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month and sponsors Swim for MS
to raise money.
Other events this spring — such as Walk MS on April 12 in Seattle and Spokane — also aim to raise awareness and "create connections stronger than the ones MS destroys."
MS is a chronic disease that damages nerve cells (causing scars called sclerosis) and interferes with signals sent from the brain and spinal cord to other parts of the body.
Symptoms are wide-ranging and may include numbness, difficulty with speech and muscle control, blurred vision, and severe fatigue.
The disease varies greatly from one person to another and in the same person over time. People living with MS can expect to have a normal or near-normal life span.
MultiCare's MS Center is the South Sound's only nationally recognized Multiple Sclerosis Center.
McDaniel, who has been helping people cope with MS for nine years, helps patients find support and deal with the stages of grief they go through after a diagnosis.
"I try to help people move through the grief and get to the point of making MS part of their life," she explains. "It's a greedy disease; it can take so much."
She is jazzed by the "Together We're Stronger!" theme of the 2015 World MS Day on May 27.
The campaign focuses on ways to make life less difficult for people with MS, such as research to find new cures and workplace policies that make reasonable adjustments for employees.
Research and rehabilitation developments
MS sufferers may be heartened by big strides in medications that have been made in the past few years and by MultiCare's research into new approaches.
John Huddlestone, MD, a board-certified neurologist at the MultiCare Neuroscience Center of Washington, and director of MultiCare's MS Center, has been involved in clinical trials of promising treatments for more than two decades.
McDaniel also urges people to take advantage of the many assistive devices that can help with household tasks and mobility.
A rehabilitation specialist can help tailor devices to each person's needs. Good mental health counseling is also essential because people with MS commonly experience depression that goes beyond the normal grieving associated with the losses and life changes the disease brings on.
"So much about MS is invisible, which makes coping so complicated," McDaniel explains.
"People feel so alone because so many of their symptoms are not seen, such as difficulties with memory and concentration that make it hard for some people to keep their jobs."
A big part of her work is helping people with MS advocate for themselves to get accommodations on the job or negotiate disability leave if they have a short-term relapse or long-term disability.
Tough to diagnose
Diagnosing MS is difficult because the symptoms can be so wide-ranging and could indicate other ailments.
It's often a case of ruling out other causes, such as a brain tumor, Lyme disease, Vitamin B12 deficiency or syphilis.
In addition to symptoms, an MRI (magnetic resonance imaging) scan showing multiple areas of scarring (sclerosis) helps confirm a diagnosis.
Contact the MultiCare MS Center at 253-403-7299.
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For two decades, Kathleen has been writing about how our bodies work and how to keep them healthy. She is the mother of a college student and an ornery cat. Away from her writing desk, Kathleen loves to garden, read mysteries and hike with her husband. More stories by this author