Female Patients at Shepherd Center Get Rehabilitation Designed to Meet Their Specific Needs
For Maria Rea, grocery shopping is an exercise in organization and tenacity.
The 34-year-old teacher from Hazlehurst, Ga., places a hand basket on her lap and rolls her wheelchair around the grocery store, collecting what she needs for her family of four. When the basket is full, she rolls to the front of the store, where she’s placed a cart, and dumps everything in. She repeats this process until she has everything on her list.
Jitka Virag, of Greenville, N.C., is equally skilled at improvising everyday tasks. She’s had to be. Nearly five years ago, Jitka was hit by a car while riding her bicycle to work at East Carolina University, where she is a professor. The accident left the mother of two with a T-4 complete spinal cord injury. Today, when making pasta for dinner (a family favorite), she methodically spoons the noodles from their cooking pot into a strainer placed over an empty pot. The practice saves her from lifting the heavy pot off the stove.
Such are the strategies women learn during their rehabilitation at Shepherd Center to help them resume their lives as wives, mothers and employees. While the goals for male and female patients are the same at Shepherd Center – to regain as much independence as possible – female patients who have a spinal cord injury (SCI) or an acquired brain injury (ABI) often receive added assistance dealing with issues unique to them, from careers to child care, body image to sexuality.
And homemaking. Therapy at Shepherd Center addresses everything a patient did before injury, and for many women that includes cooking, cleaning, shopping and doing laundry.
“We take them out on outings, teach them how to maneuver around a grocery store, practice in the kitchen – even teach them how to get dressed and put on makeup,” says Minna Hong, a peer support coordinator at Shepherd Center. “Whatever they want to work on, we try to accommodate because practice makes perfect.”
Injured 13 years ago in a car accident that left her a single mother to a 6-year-old son and 8-year-old daughter, Minna knows firsthand about being in a wheelchair and handling the challenges of raising children, working, and eventually for her, dating.
That is why she freely shares her experience with others through peer support groups.
Maria is one who benefited from such sharing. After sustaining a T-10 incomplete SCI in a February 2011 car accident, she spent seven months in Shepherd’s inpatient and day programs. One particularly helpful boost was when Shepherd taught her how to train her two children on new ways to manage day-to-day activities and tasks. Another was learning to drive an accessible vehicle: Maria now drives an accessible van (donated to Shepherd Center and then given to Maria) to the school where she works as a pre- kindergarten teacher. She plans to resume full-time teaching this fall.
“I’d probably be sitting in the closet crying if it weren’t for Shepherd,” Maria says. “They played a huge role in my recovery.”
Alyson Boyea Doherty, of Woburn, Mass., agrees. Eleven years ago, her car hydroplaned and hit a tree, leaving her with an acquired brain injury. Alyson, now 36, spent a month at Shepherd Center, relearning how to walk, talk and eat. She continued with outpatient rehabilitation at Shepherd Pathways. Her goal after leaving Shepherd was to have a “normal” life, she says.
Though she has adjusted well, Alyson encounters some limitations. Daily tasks are sometimes a challenge because the accident damaged the system in her brain that controls cognitive processes. In 2005, she married her boyfriend, Jeff, who’d been with her before the accident, and the pair moved from Atlanta to Woburn. They now have a 3-year-old son, and Alyson is a stay-at-home mom.
“Most day-to-day stuff is hard,” says Alyson, who tried to return to work as a bank teller, but was unable to. “So I try to stick to a routine as much as I can.”
That means shopping for groceries, taking her son to and from preschool and working out. As a result of her injury, she has positional vertigo, which affects her balance and ability to walk a straight line. As a result, she has to remain extra vigilant when watching her son. Finding a way to maintain a positive attitude has been equally important.
“Although it is very hard to stay positive while recovering, you have to, otherwise you will go insane feeling sorry for yourself,” says Alyson, adding that despite the extremely difficult times, the accident really strengthen the key relationships in her life, and for that she is grateful.
Jitka has experienced her share of adjustments, too. An assistant professor of physiology at East Carolina University, Jitka studies the ways to repair damaged cardiac tissue after a heart attack. Part of her research includes performing microsurgery, and the university has sought to make her transition easier by providing support staff and lowering the work table in her lab. Jitka has also learned to juggle errands and tasks, such as taking her kids to swim or dance practice, and she credits her husband, Jani, for handling most duties in the home.
While managing households and recalibrating logistics often take top priority, the women treated at Shepherd must surmount other challenges – like body image. Maria doesn’t like to wear dresses anymore because she’s self-conscious about the appearance of her legs in the wheelchair. Alyson was concerned right after her accident that her smile was “crooked.” And while Jitka calls body image “low on her priority list,” she says she doesn’t like the fact that she’s no longer at eye level with people.
Gaining some measures of control are beneficial. One of the first things that made Alyson feel “normal” again was styling her own hair, she says.
Maria felt the same way about applying makeup. “We find all kinds of ways to help patients with their grooming if it’s important to them,” Minna explains. “Sometimes, that means we get creative and teach them new techniques. What’s most important is that it can be done.”
Related to body image is sex, which most women with SCI can still enjoy, albeit in a different way. In fact, women with SCI can also still get pregnant.
“Our passion is still there – it’s just that the expression of that passion is different,” Jitka says. “I have all this metal around me, so it can be challenging to find ways around it.”
“The thought of sex terrified me,” Minna admits. “My body didn’t look the same, and I thought, ‘Who will find this attractive?’ It is very scary.” But like other Shepherd patients, Minna worked through the self-doubt and remarried five years ago. Her advice to others: “Humor is extremely helpful.”
Shepherd has a support group covering topics relating to sexuality so women can talk about their issues and concerns. “You don’t get brownie points for doing it on your own,” Minna says. “You need to ask for help and support.”
It helps to have that support close to home. Alyson, Jitka and Maria all credit their husbands for standing by them and giving them the love and support they need to adjust to their new situations.
“My husband gives me ‘tough love,’” Maria says. “He tells me, ‘I’m here if you need me, but try it on your own first.” “My husband is undeterred by adversity,” Jitka says. “If there is a way to get around it, he will find it. We share the view that things are only impossible if you let them be.”
Why Are Women Unique at Shepherd Center?
Regardless of injury – spinal cord injury (SCI) or acquired brain injury (ABI) –men far outnumber women in the patient population at Shepherd Center. In 2011, Shepherd had 916 inpatients. Of those, only 209 were women.
“Generally the ratio of men to women with SCI is four to one,” says Sarah Morrison, PT, vice president of Clinical Services at Shepherd Center. “Last year, only 18 percent of the people we served in the SCI inpatient rehabilitation program were women.”
This statistic is mirrored on the brain injury side, as well. “Only 27 percent of all ABIs at Shepherd are women,” says Susan Johnson, MA, CCC-SLP, CCM, director of Brain Injury Services at Shepherd. This imbalance is largely because, by nature, men are higher risk takers than women, and they are more likely to put themselves in situations that are unsafe, where serious injuries can occur.
“SCI has many causes, but the typical ones are associated with major trauma from moving vehicle accidents, falls, sports and violence,” Morrison says. “In general, men take more risks and are more likely to engage in highly dangerous sports or activities that lead to these kinds of catastrophic injuries.” The same is true for traumatic brain injuries, Johnson says, adding that men also tend to have jobs with higher stress levels, which increases hypertension and vulnerability to strokes.
Historically, this lopsidedness has also been reflected in the body of research dedicated to women with SCI and ABI – mainly because of the small pool from which to pull research candidates. Just as they have unique needs in therapy, women with SCI and ABI also have unique needs in research, and the field is realizing that women need to be studied differently than men.
“Women develop different co-morbidities than men,” says Lesley Hudson, M.A., co-project director of the Southeastern Regional Spinal Cord Model Injury System at Shepherd Center. “Because there aren’t as many patients to study, those issues have been largely ignored.” Reproduction, fertility, osteoporosis and menopause are issues that are unique to women and need to be addressed, she adds.
One big factor that has helped fuel new research focused on women is that more women are entering the research field and obtaining doctoral and medical degrees. “Also, women are becoming more vocal, and are asking for this,” Hudson says. “Usually, when there is a glaring need, someone steps up.”
And research that is unique to women will only help them deal with their unique issues.
“We’ve done so much to ensure a reasonable life expectancy,” Hudson says. “We now want to give women the tools to improve the quality of that life.”
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 743 inpatients, 277 day program patients and more than 7,161 outpatients each year in more than 46,000 visits.