The Will to Help Never Leaves
Vera James lost her husband, Fred, to Multiple System Atrophy in 2003, marking her transformation from experienced caregiver to vital resource for countless others. In addition to serving on the MSA Coalition board of directors, Vera answers calls on an MSA Hotline in her home, at all hours – and that, she says, is just fine.
Vera’s introduction to Multiple System Atrophy mirrors the experience of many who have dealt with this disease. “Fred was initially misdiagnosed with Parkinson’s, and when we finally got a correct diagnosis, the physician knew very little about Multiple System Atrophy,” says Vera. “I found the information I needed online, first through a Yahoo! MSA support group and then from the MSA Coalition, which the Yahoo! group pointed me to.”
As Fred’s condition deteriorated, Vera used the information she received to sharpen her caregiver skills. “At first, he could do most everything for himself,” she says. “But I gradually took over giving him baths, helping him get dressed, helping him get out of chairs, and eventually speaking for him and even rolling him over at night so he could get a little more rest.”
Through it all, Vera says, “Multiple System Atrophy couldn’t take away our love for each other. If anything, the disease brought us closer together. We learned a lot about our commitments to each other and the meaning of our wedding vows. And even though it took Fred, Multiple System Atrophy could not take the fact that I care deeply about those who have this disease. I’ve channeled my passion since then to helping others face this disorder.”
In fact, Vera attended her first annual MSA Coalition Patient/Caregiver Conference shortly after Fred’s passing; it was the first of the conferences held near her home. As a follow-up to conversations she had there, Vera agreed to the installation of a toll-free support line in her home, followed by an appointment to the MSA Coalition board.
As a board member, Vera wears multiple hats, from fulfilling requests for memorial envelopes to mailing DVDs and printed information to assisting with the annual conference set-up, which is especially complicated given the special needs of attendees. When asked to name the most important aspect of the MSA Coalition, Vera says: “Everything. The research is fantastic, and grants have grown exponentially thanks to generous donations. The information we provide is absolutely essential to people who are dealing with this rare disease. The conferences enable patients and caregivers to form deep bonds with others they would otherwise never have met. All aspects of the MSA Coalition are important – this is full-spectrum support.”
Year-round, Vera answers hotline calls from patients, caregivers, hospices and physicians, an activity of which she never tires. “I get to be a lifeline, helping to take away fear with information,” she says. “Most first-time calls are from newly diagnosed patients or caregivers whose loved one has just been diagnosed. Then they call back whenever they need more information about equipment, speech therapy and what to do for this and that. What’s most common among the callers is the love that drives them to make things better and the determination to keep going. On a few occasions, the caller has been just really down at the moment and says, ‘You don’t know what it’s like.’ I assure them that I do know what it’s like, telling them, ‘I’ve been there’.”
