Dreaming Big After Stroke

Amelia Holley had walked this road plenty of times. At just 18, she was undergoing her 51st surgery to remove the extra fluid pressing on her brain. But this time was different. She was unresponsive after the procedure, and doctors soon discovered she’d had a stroke at some point either during or immediately after the procedure.

“I remember calling my husband at 6:30 a.m. and said: ‘Start praying. Something is very wrong,’” recalls Amelia’s mom, Claire.

Amelia, an Atlanta native, was born with hydrocephalus and Dandy Walker syndrome. She has dealt with terrible headaches for most of her life, making it hard to focus or maintain her balance. While stroke was always in the back of their minds as a possible complication, it wasn’t probable.

Her mom, a former nurse at Piedmont Hospital, knew her guitar-playing, fun-loving high school senior needed to get to Shepherd Center: It was here that she believed Amelia would have the best chance of a full recovery.

“I couldn’t move or swallow, I wasn’t able to speak very well and I was extremely confused,” Amelia recalls. “But the minute I got to Shepherd Center, I came back into focus, and I felt I could live life and get back to my old self again.”

When she arrived at Shepherd Center, her treatment team put her in a reclining wheelchair, helped her take a shower and gave her time with one of Shepherd Center’s facility dogs – things her mom said other hospitals are often not equipped to do. What’s more, Amelia had a highly specialized team behind her – doctors, nurses, neuropsychologists and therapists of all disciplines to provide tailored physical, occupational, speech, cognitive and recreational therapy – even music therapy to help get back to playing the guitar.

That day, Amelia began her road to recovery, which would include six weeks of inpatient care at Shepherd Center. She then transitioned to Shepherd Pathways, Shepherd Center’s post-acute rehabilitation program for people recovering from brain injury. There, she spent seven weeks in Shepherd Pathways’ day program and then other nine weeks in Shepherd Pathways’ outpatient program.

SIDEBAR:
Striking Back at Stroke:
Shepherd Center has an arsenal of technology and tools to aid rehabilitation after stroke.

Stroke at Any Age

Most people associate stroke with older age. But, increasingly, strokes are striking people in the prime of their lives – a trend partly explained by shifting lifestyle patterns and rising rates of chronic conditions, including obesity, diabetes, high blood pressure and high cholesterol that can damage or block blood vessels. Shepherd Center treats about 140 people post-stroke a year – their average age is just 47. Shepherd Center also sees many patients who have had a stroke due to a previously undetected brain, heart or vascular malformation.

“Early and intensive rehabilitation is critical because we see the greatest rate of recovery in the first year, and these are people who have a lifetime ahead of them,” says Payal Fadia, M.D., medical director of Post-Acute Brain Injury Services at Shepherd Pathways. “Younger patients find it especially difficult to come to terms with the stroke and what it means.”

The concern that often weighs most heavily on the minds of these patients is their long-term prognosis – a fear of the unknown and what comes next.

“Anxiety related to the future and adjustment issues can be a major barrier to rehabilitation and recovery, and therefore counseling for patients and their families to address coping strategies, in addition to stroke education, is a very important piece of the holistic and comprehensive approach that we take at Shepherd,” Dr Fadia says.

Honing in on What Matters Most in Setting Goals

As Amelia and others can attest, one thing that stands out about Shepherd Center is the time and care the rehabilitation teams take in getting to know patients. It’s what serves as the foundation for the road to recovery ahead.

“We center what we do around the patient and what they most want to get back to doing,” says Susan Johnson, program director of the Shepherd Center Brain Injury Program. “It gives them so much hope, and they can see how the things we are doing in rehabilitation are affecting those goals.”

When things get hard, she explained, they can remind themselves, “’I’m doing this because I’m going to be able to care for my child again, get dressed by myself or return to work or school.’ It makes sense and draws upon what’s important to them,” Johnson says.

It also helps track an individual’s progress.

One example she recounts is the story of a recent patient recovering from stroke. His left arm was very weak, and it would often fall and catch in his wheelchair.

“We’d repeatedly remind him to rest his arm on the trough of his chair, or he’d hurt himself, but it wasn’t working,” Johnson recalls.

His therapist asked him what he really wanted to get back to doing. A father of 1-year-old twins at the time, he looked up and said,” I want to be able to hold my babies.”

From that point forward, he appeared much more aware of his left side and showed renewed efforts to gain strength. His therapy team even used baby dolls to help him get ready for when the time came for him to hold his children.

More than just restoring him physically, Seth Dickinson of Mantachie, Mississippi, credits the therapists and staff at Shepherd Center for restoring his hope.

“I was more than just a situation to them; I was Seth,” he says. “They took the time to ask me about who I was before the stroke, to teach me about my new normal and how to fight back from it.”

And fight he did.

Seth was an 18-year-old freshman at Ole Miss with aspirations of one day running for public office when he experienced a brain aneurysm and stroke in March 2015. He was home for spring break and had planned to leave the next day.

“I got a headache; it was like a bolt of lightning hit,” he said. “I called a friend, and my speech started to slur and within moments, I was on the floor.”

When Seth arrived at Shepherd Center, he was barely conscious, and his family had been told at the acute care hospital that he would never walk again. But through Shepherd Center’s intensive stroke rehabilitation program – he often took part in three to four hours of therapy a day – he learned to walk again, how to use his left side and communicate.

“I was at stage zero, and now I’m back to doing things on my own again. My parents have seen me take my first steps twice in life,” says Seth, who was recently returned to Shepherd Center’s campus for a reunion with friends he made while in therapy.

Less than six months after experiencing a catastrophic stroke, Seth was able to take a full load of online classes in the fall of 2015. He is now back on campus, where he is writing public policy and advocating for people with disabilities. He still has plans for a political career.

Returning to a Productive Life

For Roger Brathwaite, a 46-year-old father of four boys -- Chandler, Carrington, Cyon and Chase --  from Atlanta, Georgia, not being able to return to his job continues to be a personal struggle.

“For people in the prime of their lives, getting back into the workforce is really important. It gives a sense of purpose and fulfillment,” says Roger, who worked as an IT computer architect.

Discovered unconscious by his sons, Roger experienced a hemorrhagic stroke in December 2014. It left him unable to use his right side or even speak for a while.

“I didn’t know about stroke,” Roger says. “It’s amazing how much it degenerates your whole body, and you can’t just go to a stroke doctor. It takes a team of doctors and therapists, each with their own discipline, working as a team to help you get back to a whole life.”

Despite the tremendous strides he has made in his recovery – walking, being independent and learning to communicate again – Roger hasn’t been able to return to work.

“People say, ‘Relax, you’re on disability,’ but I think ‘What am I going to do for the next 40 to 50 years, something that is meaningful and challenging?’” Roger says. “I still have some weaknesses in my brain, and I have to start thinking about my post-stroke life. I’m hopeful I will continue to make strides.”

True to his go-getter nature, Roger recently earned an MBA at the University of Georgia and is taking classes at Emory University to pursue a career in healthcare information technology. He wants to dedicate his time to answer tcommon analytics problems for healthcare.He believes his work advising the Technology Association of Georgia and Georgia Tech will assist with his pursuits to apply healthcare analytics while also providing them with education on modern social media concepts.

Having an identity and being able to contribute to society is an important part of the recovery process, but it’s not always easy, Johnson says.

“Returning to work or school may not look the same as before the stroke,” she says. “For any catastrophic event, you often need to learn strategies to support ongoing recovery. Many people have weakness when they leave and face ongoing recovery.”

What’s more, Johnson says, often other people don’t understand the challenges involved in recovering from stroke. Some friends tend to fall away, and circles of support may get smaller, which means work becomes even more important.

“But there is life after stroke,” she said. “We help get people back to productive life.”

As part of this process, patients go on community outings – whether it’s out to lunch or dinner, to the grocery story, a ball game or back to their school. It’s a chance to experience real-life events and develop strategies to adjust to any challenges they face while practicing their skills within a supportive environment.

Education is Key

Of course, training and educating patients and families about stroke and recovery is a vital part of their rehabilitation.

“They are ultimately the ones who will carry on what we teach, how to maximize recovery and prevent another stroke and secondary complications, such as diabetes and high blood pressure,” Dr. Fadia says

Seth says when he finally got his bearings, he appreciated that the team educated him about what had happened.

“I had to understand my limits and then push the boundaries in therapy, but still work within the confines of where I realistically was in my process,” Seth says.

His team taught him skills for dressing himself and how to adapt.

“For a long while, I was trapped in my body, but I had a mind that was as free as ever,” Seth says. He soon progressed and took part in Shepherd Center’s return-to- school program, a model classroom that prepared him to return to college.

The People Make all the Difference

“It’s really the people that made it so fantastic,” Amelia says of her rehabilitation experience. “They were always so positive and never let on that I wouldn’t be able to do things. The staff members are accepting of who you are. They take into account who you were before your stroke and get you back to the best you can be.”

Seth says in addition to the staff, group therapy and going through the experience with others who are in the same situation as you counts for a lot.

“I was able to relate and rely on them, and there was a real feeling that we are in this together,” he said, as he stood in a hallway at Shepherd Pathways surrounded by pictures of success stories. “It gives you perspective.”

Keeping Faith Alive

“I tell patients to take it one day at a time, but never give up. You have to keep fighting and stay true to your goals,” Dr. Fadia says.

It’s a sentiment not lost on Seth, Roger or Amelia. Although each faced very different types of strokes, they share an innate ability to persevere, regain function and get back to living.

“They are all so positive and motivated and have wonderful support systems in place, which can be half the battle,” Dr. Fadia adds.

For Claire, the experience at Shepherd Center is all a mom could ask for.

“They gave Amelia her life back, with 80 percent recovery already, and it has only been seven months,” she says.

“I honestly didn’t think I’d be able to walk again,” Amelia says.

She and her treatment team worked tirelessly to help retrain her left arm and leg until one day she was able to take a few steps on her own. She soon progressed to using a walker and now only needs a cane for safety and balance.

“It was amazing,” she says.

Amelia is back to playing guitar and is only 1.5 credits away from graduating high school after getting an A in her online math course. As she continues to make progress, her hope is to soon realize her dream of attending Belmont University in Nashville.

For Seth, while back at Shepherd Pathways to visit with friends, he noticed the Shepherd Center busses parked in a row. He commented on the words on the bus, which he’d never noticed before.

“‘Restoring hope and rebuilding lives,” Seth says, “I like that because it’s exactly what Shepherd Center does.”

SIDEBAR: Striking Back at Stroke
Shepherd Center has an arsenal of technology and tools to aid rehabilitation after stroke

The average age of Shepherd Center patients treated following a stroke is just 47 years old – an age that makes it likely that the patient has had access to modern technology almost their entire lives.

That is one reason Shepherd Center uses a variety of high-tech therapeutic technologies as an important part of its rehabilitation program for people who have experienced a stroke.

“Shepherd Center treats patients of all ages, but often sees people who are on the earlier side of the spectrum for stroke, so technology is more comfortable for them,” says Lauren Greenfeld, PT, DPT, NCS, physical therapy manager in Shepherd Center’s inpatient Acquired Brain Injury (ABI) Program. “People tend to accept concrete feedback from a machine, and for today’s patients, technology can be really engaging because it has the ‘cool’ factor.”

Here’s a look at some of the technology Shepherd Center uses to help patients recover during rehabilitation for stroke, as well as brain and spinal cord injuries. (Note that not all pieces of equipment are available in all Shepherd Center rehabilitation programs and locations.)

WAVE^® – The WAVE machine offers full-body vibration and allows for improved strength, balance and flexibility, all of which can be affected by stroke. It also enhances blood circulation and can help restore muscle fibers that might have been damaged by stroke.

FES Bike – Functional electrical stimulation (FES) bikes are in most gyms at Shepherd Center and Shepherd Pathways, the hospital’s post-acute program for people with brain injury. The bike uses FES to activate muscles for neuromuscular education, which is essential after stroke. The FES bike initially moves the patient’s legs for them as they build strength.

Lokomat^® – A favorite of many Shepherd Center patients, the Lokomat is a body-weight supported treadmill training system with robotic legs. It is used with patients who have limited strength in their lower extremities. The Lokomat increases the intensity and volume of therapy that a therapist can provide to a patient on his or her own.

Balance Master^® – The Balance Master provides assessment and retraining of the sensory and voluntary motor control of balance with visual biofeedback on either a stable or unstable surface and in a stable or dynamic visual environment, depending on the patient’s needs. It can mimic various environments found in a patient’s natural environment to measure the patient’s use of visual information to maintain balance.

Armeo^® – The Armeo, found in gyms throughout Shepherd Center and Shepherd Pathways, is an exoskeleton for the arms. The Armeo assists hand and wrist exercises and active movement across a 3-D workspace that often resembles a video game. The Armeo also assesses the motor ability and coordination of a patient.

Tilt Table/Moveo^® – The Tilt Table provides for gradual movement from supine to standing position for improved tolerance, range of motion and weight bearing. The Moveo is a tilt table on sliding rails allowing for active lower-extremity movement in a position with reduced gravity.

Standing Frame – Standing frames move from a seated to a standing position. They promote upright standing posture, equal lower-extremity weight bearing, bone density and range of motion.

Erigo^® – The Erigo allows for mobilization soon after an injury. It helps the patient become vertical gradually and fosters cyclic leg movement and loading mimicking a gait pattern.

ARJO Walker™ – The ARJO Walker is an assistive device used primarily for standing and gait training activities. It provides upper-extremity support to allow for ease of movement of lower extremities.

Lite Gait^® - The Lite Gait is an assistive device that provides body-weight support to allow for more fluid movement over multiple surfaces.

Dynavision™ - For persons with visual and visuomotor impairment, Dynavision is used to train compensatory search strategies, improve oculomotor skills, such as localization, fixation, gaze shift and tracking, increase peripheral visual awareness, visual attention and anticipation, and improve eye-hand coordination and visuomotor reaction time.

Driving Simulator – The driving simulator assesses vision, strength and cognitive processing to determine safety with driving. It has a steering wheel, pedals and a screen that shows virtual driving challenges.

Amadeo^® – Amadeo is a robotic-assisted therapy device that uses magnets to target finger and thumb movements. It provides continuous and ergonomic stimulation of grasping movements and offers integrated, real-time biofeedback through games.

Diego^® - Diego is a robotic-assisted therapy device used for the arm and shoulder. It can be used with one or both arms and provides active and passive therapy based on active-gravity compensation from a weight-support system. Like the Amadeo, it provides biofeedback through games.

Pablo^® – This computer- and sensor-aided technology provides measurements of the strength of fingers and hands, including extension and flexion. It also can measure the scope of movement for the entire upper extremity.

Tymo^® – Tymo measures and trains force and weight distributions in a playful manner with the patient standing, sitting and supporting him or herself. Tymo can be used to analyze and train patients to maintain their balance.

“Technology is useful in rehabilitation because it can integrate multiple systems at once, including vision, sensation, motor control, so it maximizes the time the patient is in therapy,” Greenfeld says.

Beyond the machines that you see in Shepherd Center gyms, patients who have had a stroke often use their phones, tablets and computers as part of their rehabilitation.

“Many times, the first functional use we see in patients is using their cell phone or iPad to communicate,” says Nicole Prevost, OTR/L, occupational therapy manager in Shepherd Center’s ABI Program. “Beyond just communication, we use different apps and games to work on memory, scheduling and movement."

To learn more about stroke rehabilitation at Shepherd Center, visit shepherd.org/stroke.

By Amanda Crowe, MA, MPH
Photos by Louie Favorite