Two young moms are using their experiences with heart attack and stroke to help others find support during recovery.
When 33-year-old Janice Edwards-Jackson of Queen Creek, Ariz., was released from the hospital after a stroke in the thalamus region of her brain, no one asked if she would need help at home taking care of herself or her children.
At age 23, young mom Karen Guccione-Englert of St. Louis had an abnormally fast heart rate followed by cardiac arrest, and she also found herself on her own after discharge. Her healthcare team included no psychologist or social worker, and no one pointed her to resources in her area.
Now, both Edwards-Jackson and Guccione-Englert are helping the American Heart Association (AHA) turn the situation around for people who have had a stroke or a heart event such as a heart attack. Volunteers like these two women now offer peer-to-peer social supportthrough AHA’s new online Support Network, and also through in-person classes and appearances.
The Healing Comfort of Family, Friends, and Neighbors
After a heart or stroke event, patients urgently need love, trust, and advice. But they may also need financial support and logistical help with day-to-day tasks at home, says Barry J. Jacobs, PsyD, a clinical psychologist in Springfield, Pa., an AHA volunteer, and the author of The Emotional Survival Guide for Caregivers.
Edwards-Jackson is a case in point. “People were willing to reach out during that time, even people I didn’t know, and I’m so thankful,” she says about coming home after her stroke a year ago. “For two or three weeks our meals were covered. My mom would come over and stay a few days and help get my kids to school, cook meals, help clean, do laundry. My husband worked all day, and when he came home he would wash dishes and give the kids their baths and put them to bed.” But, she explains, “I’m a go-getter, type-A personality. It was hard for me to have to rely on my Mom and my husband to do things for me.” Even a year later, she’s still recovering.
Support can also come from people outside your immediate family. When Guccione-Englert was first diagnosed with the fast heart-rate rhythm disorder called supraventricular tachycardia, she had three ablation procedures, and then cardiac arrest right on the operating table. Coming home, she needed a strong support system, and her co-workers and friends rallied to help. “These are the people I relied on to pick up my daughter from daycare. My parents lived out of state and I had no siblings,” she says.
Support During Recovery Pushes Back Depression
Although research on social support and heart disease incidence is somewhat controversial, Dr. Jacobs says, he points to studies showing how quality of support may affect disease progression. For example, a September 2014 study of 3,432 patients age 55 and younger, published in the Journal of the American Heart Association, found patients who had less social support were worse off right after the heart event and up to one year later. Those with less support had significantly more symptoms of depression, poorer health, and lower quality of life, the researchers found.
After a heart attack or heart surgery, depression incidence goes up. Twenty percent of heart patients will have at least mild depression, Jacobs says. “One possible reason is that people are suddenly faced with their own mortality — that can be depressing.” Depression itself is a risk factor for cardiac mortality after someone has had a cardiac event.
“People who are well supported are less likely to become depressed,” he says. The reason? “People who have social support are much more likely to be adherent to their treatment regimen — to go to cardiac rehab, take meds, and eat well,” according to Jacobs.
Social Support Through Cardiac Rehab
Traditionally, support after a heart disease diagnosis or stroke comes from peers at cardiac rehab, and also during follow-up visits with a primary care physician, who can screen for depression symptoms. In cardiac rehab, patients learn to increase their physical endurance and trust their bodies again, and they may also benefit from the social support of the group. “A key factor is the fact that you’re in the gym with people who’ve gone through the same thing — pushing each other on. That helps a lot,” Jacobs says.
After her stroke, Edwards-Jackson had difficulty walking. She thought people would stare and was self-conscious because they might think she looked intoxicated. Her physical and cognitive therapists helped her by telling her how much progress she was making. “Thank God for physical therapists! I started three weeks after the stroke, three times a week,” she says. “I started cognitive therapy and went once a week. She helped me organize lists for what I would make for dinner, and asked me reasoning-type questions.”
Finding a personal connection with someone like yourself after a stroke or heart event can be a challenge, especially for younger female patients. “When I was first diagnosed, at 23, I didn’t know anyone my age or gender with heart disease. Everyone on the cardiac floor said, What are you doing here?” Guccione-Englert recalls. She still hasn’t found another person with one of the heart conditions she lives with now. In addition to atrial fibrillation, she has a superior vena occlusion — a block of the main vessel that leads from her heart. “I am living with the condition. I will never have a last doctor visit,” she says.
When she joined an AHA support group, she found the peers she was looking for. “I reached out to the AHA and asked how I could get involved. I had to make that initial call,” she says. She then joined the AHA’s Passion Committee and is now the chairperson.
“We are a group of women who are survivors committed to educating women about heart health and heart disease risks,” she explains. “We consistently talk about the need for patient support.” At speaking engagements and health fairs, they focus on education and risk assessment, and also support each other as survivors.
“We’ve all walked a similar journey. We know what it’s like to walk alone with this illness,” Guccione-Englert says.
New Places to Find Peer-to-Peer Support
Sources of support are growing, with real-time interaction online in peer-to-peer forums like the AHA’s Support Network. Patients find support and give support at the same time. Ongoing conversations on the site cover living with specific heart conditions or stroke, recovery experiences, and cardiac rehab. As Guccione-Englert points out, doctors are “fantastic at treating physical symptoms and writing a prescription.” But, she says, “They are not equipped to deal with the emotional side of that. They don’t know what to do. So they don’t do anything.”
As a psychologist and part of the heart patient’s team, Jacob’s knows he’s still not fully credible as an expert and guide, because he hasn’t gone through the patient experience. A peer patient adds credibility because they’ve been through the same thing. “What healthcare professionals and family do is extremely important, but all human beings who feel like they belong to a group feel better understood. They feel heard and cared for in a way different from interacting with other people who haven’t been through a heart event,” he says.
Looking for similar experiences, Edwards-Jackson went online to learn more about her condition. “Even in the hospital I was on my cell phone Googling stroke and reading about it. Then it started making sense,” she says. Finding sources written by patients helped. “I read a book my oldest brother gave me about stroke by neurologist Jill Bolt Taylor, My Stroke of Insight, and what she experienced helped me.” Edwards-Jackson says she didn’t have a peer support group until she joined the AHA’s, where she found stroke survivors helping one another out.
Having a familiar journey can make all the difference. “Through work with the AHA passion committee, I wasn’t looking in the mirror at a person with heart disease, I was looking at a circle of friends,” says Guccione-Englert. “We are definitely there for each other.”