July 1st, 2002
THIS IS AN UPDATE on our MS support group, which has now been meeting every other Tuesday for nearly 7 years. When our group started with four women, we all displayed symptoms of relapsing-remitting MS. Soon the group grew to five members, and presently numbers eight. Now, we've all been diagnosed with secondary-progressive MS. Since our inception, crutches, several canes, walkers, and an electric cart line the walls, and now two electric wheelchairs cram around our luncheon table. The youngest in our group is 53 years old; the oldest is 60.
We've all experienced MS symptoms for years. In our 20s and 30s, before the advent of magnetic resonance imaging (MRI), weird, unusual symptoms led us to many physicians and much denial. We came "out of the closet" at various times, with an undeniable diagnosis given by the "all-seeing" MRI. Every one of our cerebrums reflected various patterns of disease progression.
Our group of eight well represents this disease of many mysterious symptoms. Two women have chronic, severe visual deficits, while some have off-and-on visual problems, sit in wheelchairs all day, and need help with dressing and eating. Five still bravely, although sometimes with trepidation, live by themselves. Four women continue to drive; four do not. As for me, probably the physically sickest of the group, the volume of my voice fades fast, and group members are often unable to hear me.
A loving aide/friend sets the table for us and helps me eat. All of us require much more assistance than we did 7 years ago, as we continue to define and redefine the term secondary-progressive MS. Secondary to what? This disease is primary to us.
Walking a Thousand Miles
More difficult to assess and less recognizable, and yet very real, are our cognitive losses. A support group member, former CFO and vice president of a large company, who lives by herself and uses a walker, found it more and more difficult to finish a task in a reasonable length of time. She, like me, finds her memory, reasoning powers, and judgment skills fleeting and unpredictable, compared with 10 years ago.
Over the past 20 years, researchers have found that about half of us with MS will develop changes in cognition. Cognition involves knowledge, memory, language, reasoning, and judgment. People with secondary-- progressive MS are at a higher risk of cognitive failures than those with other forms of the disease. At times, a group member may expound on a topic, while another can't concentrate on the subject at hand. Constant repetition of times, facts, and figures is necessary.
The continued progression of our group members' MS dictates, more than ever, that we seek a healthy lifestyle. Thus, a balanced, fresh, low-fat diet remains essential. Some women still go for days without proper nutrition, so to address this problem each member pays $6.00 a lunch. When I wrote about us before, we were ordering pizza. Seven years ago, we used to go home and fix our own lunch after meeting. Now, healthy food is made or delivered.
At our most recent meeting, a friend who has relapsing-remitting MS made our support group a gourmet lunch. Not only was it delicious but also inspiring-she works diligently at being physically fit, eats a low-fat diet, and has lost weight. She has moved from her wheelchair to walking marathons. (She's also taken one of the "ABC" drugs for more than 5 years.)
As I reflect on our group and our disease, with its various types and
stages, I am reminded of the old Chinese proverb: "It takes one step to
walk a thousand miles." We eight women are on our thousand-mile journey
with unlikely steps-sharing, crying, and laughing.
© 2002 Real Living with Multiple Sclerosis