Momentum - Fall 2012

Momentum
MS—it’s a family matter

When someone is newly diagnosed, the first person to connect with the National Multiple Sclerosis Society is often a spouse, parent, sibling, child or close friend. Usually, they’re seeking information and resources for their loved one, but they rarely ask for help for themselves. Devoted family members can be pillars of strength for people with MS—but only if they also take care of themselves, because MS changes things for everyone.

MS changes family plans. If Mom isn’t feeling well today, she may not be able to participate in activities the way she once did. The family may not be able to afford the things they used to, either, because living with MS can be so expensive. And long-term goals, like education or retirement, may shift when caregiving becomes a priority.

MARK KIRYLUK

MS changes relationships. I’ve heard many family members describe the helplessness that they feel in trying to be supportive to a person with MS. They don’t know what is or isn’t OK to say. They can’t always tell how the person with MS feels—and that can create misunderstandings, disappointments, frustrations. If they don’t have a way to discuss issues, it can have a longstanding impact on the relationship.

MS affects
everyone in
the family of
the person
diagnosed.

Some people transform their feelings of powerlessness over the disease by getting involved. Dennis Dirksen, a board member at the Kentucky/Southeast Indiana Chapter, whose wife and children have MS, completed the Challenge Walk MS—a 3-day, 50-mile walk—in Charleston, S.C., this spring. Connecting with others while doing something so difficult and meaningful was a very powerful, therapeutic experience, he said. But there was so much more to it. “I was surprised at the people who gave money to support me in this. I never asked them before, but this gave them an opportunity to express their caring and concern and love for me and my family,” he told me.

For some family members,
staying informed about the
disease’s progression is the
most important factor. I recall
a woman in Spokane, Wash.,
whose husband had MS; she
told me that even though she’s a
nurse, his doctor wouldn’t allow
her in the exam room during his
appointments. The doctor didn’t
realize they were a team—that
they were going to get through
this together. That woman,
Jean Rose, was instrumental in
helping the Society shine a light
on the fact that the entire family
lives with this disease.