Ten years ago, retired nurse Ruth Arnouts, of Easton, suffered a potentially life-changing event – a stroke. But for Arnouts, who felt very fortunate that her stroke was relatively mild, the changes that followed were more about helping fellow survivors than coping with personal disabilities or limitations.
“I felt very lucky, and as I learned more about the high incidence of stroke – especially for older people -and how it completely disrupts the lives of survivors and their families, I decided I wanted to give back to the community by helping others recover,” Arnouts says.
Working with Christina Ball, who was then the neuroscience nursing specialist at Shore Medical Center at Easton, Arnouts and a fellow stroke survivor, Melissa Malcolm, started the group and gained new members by referral from hospital. Arnouts coordinated topics and speakers for the meetings until recently, when she gave up the leadership duties but continues to attend the group.
“We started meeting in St. Michaels, moved up to the Brookletts Place senior center in Easton, then to the Presbyterian Church in Easton, and now we gather at Shore Medical Pavilion at Easton,” Arnouts says. “There are usually eight to 12 of us in attendance, and several have been coming for eight years – and a few of us for all ten years.”
UM Shore Regional Health treats approximately 600 stroke patients every year. Those who survive the event find that that recovery poses diverse challenges in such areas as speech, balance, mobility and cognition – challenges that require ongoing effort and determination. to overcome. But survivors should not feel they have to go it alone: Several studies have validated the importance of social support in stroke recovery because social interaction helps ease the depression and isolation felt by many survivors.
Says Nicole Leonard, neuroscience specialist/stroke coordinator for the Primary Stroke Center at UM Shore Medical Center at Easton who now leads the Mid Shore Stroke Support Group and also the Queenstown Stroke Support Group, “Both groups host guest speakers on special topics related to stroke recovery, but they also provide camaraderie, comfort and hope. Members are at varying stages of recovery and they all share their stories. More recent survivors are inspired and encouraged to hear from those who are a few years out but still making progress in overcoming their deficits. They challenge each other to keep improving and celebrate each other’s successes.”
Drake Ferguson has attended the Mid Shore Stroke Support Group with his wife, Elizabeth, since 2008. At the April meeting celebrating the group’s 10th anniversary, he took Leonard’s observations a step further. “Doctors can tell you everything about stroke in the acute phase, but once you are recovering, stroke survivors have much more to offer you because they have lived through it, day to day,” says Ferguson. “It used to be said that you only keep recovering months or up to a year after your stroke, but this group has taught me that you can keep progressing for years if you work at it. We’ve all seen each other improve, whether it’s in our mobility or our speech or some other aspect. I’ve learned so much from others in this room, just through listening and observation – they made me realize that to a large degree, my recovery was and is in my own hands.”
Says another long-time group member, Donna Richardson, “I have learned so much from my fellow survivors and also from the expert presenters who have talked to us about how to cope with different effects of stroke.” Presentations to the group have focused on a wide array of practical matters, for example, how to minimize your fall risk and how to get up if you fall, what kinds of assistive devices are available to increase your independence and mobility, dealing with sleep problems and vision deficits, nutrition and medications after a stroke, how to avoid becoming a victim of fraud and identity theft, and even learning to a dance after a stroke.
The biggest challenge for Richardson was regaining her ability to drive a car and getting her driver’s license renewed. “I started off in a wheelchair and then graduated to a walker, and finally got myself to be freestanding again. Dealing with the Motor Vehicle Administration was a real battle and it took me five tries, but the group was cheering me on and I did it,” she says.
Caregivers also derive benefit from the group. Says Mandy Owen, who helps group member Waller Hairston with transportation and domestic duties, “Your instinct is to do everything for the survivor so they don’t take any risks. In listening and talking to family and group members, I learned to resist that instinct and to encourage Waller to do quite a few things on his own.”
Ferguson agrees. “For the caregiver, it’s a fine line between doing too much and not enough, but for the survivor, making a mistake is the way to figure out how to get it right the next time. Elizabeth let me regain my driving skills by starting with our riding mower, and yes, early on I did hit a few trees,” he says with a laugh.
The Mid Shore Group also gets together for fun, hosting an annual holiday party and celebrating milestones like birthdays and wedding anniversaries. “It’s like a family,” observes Jessica Fluharty, formerly neuroscience specialist with UM Shore Regional Health who came to the 10th anniversary meeting to catch up with old friends. “It is really a blessing to see how much the members care for and support each other.”
How much health benefit is gained by participating in a support group? According to the national nonprofit organization, Peers for Progress, studies show that for people with chronic diseases and other conditions, peer support is a “critical and effective strategy for ongoing health care and sustained behavior change.” Social support increases patient knowledge of his or disease and encourages compliance with physician orders, including medication. Those receiving peer support are less likely to require emergency care and report less depression.
In the case of some conditions, peer support can reduce morbidity and mortality rates and increase life expectancy, but in others, the direct and most dramatic benefit is seen in quality of life. Melissa Malcolm states it well, saying, “The stroke support group has been one of the biggest influences in my life. Everyone in the group has influenced how much of a better person I have become.”