The Business of Building Hope

Mark Ashley and his wife Sue

By Maureen Harmon | Photos by John Davis

When Steve Ashley suffered a life-altering brain injury that left him a quadriplegic, incapable of speech, his younger brother, Mark, and Mark’s wife, Sue, were able to imagine a better future for him. Then they helped him build it — and have helped thousands of others do the same.

It was the early 1980s and Mark Ashley ’77 was on his way to one of his patient’s living quarters in the residential area of the Centre for Neuro Skills (CNS), the rehabilitation facility he had founded to treat patients with acquired and traumatic brain injuries. He was carrying a small bottle of champagne.

The patient, a young husband and father, was there with his wife. He had suffered a severe brain injury in an accident, and the couple had spent the afternoon going over his treatment plan with the staff at the center. He had small children, and there was a very tough — and very long — road lying ahead.

His wife didn’t see any hope in their situation, but then the doorbell rang, and there Mark stood with that champagne and a smile. Today, he told them, is a good day.

“What is the champagne for?” she asked.

“This is to celebrate that you now know what’s wrong,” he told the wife, “and we’re going to work to fix it. This is a turning point in your life.”

What Mark didn’t know — couldn’t have known until years later — was that that moment had indeed altered the course of the rest of her life. Before his arrival at the door, the wife — with what she considered a bleak future in front of her — was prepared to kill herself that evening. Instead, she made a toast to the future.

The dreaded call

It was 1971. Mark Ashley was 15. His older brother, Steve, was 20, serving in the U.S. Navy, stationed in Sicily during the Vietnam War, when the family got the dreaded call.

Steve was in the hospital, in a coma, and on a ventilator. He had suffered a basilar artery aneurysm, which left him comatose. With that one phone call, the family that Mark knew — and the big brother he looked up to — changed forever.

“You learn very quickly that you’re not going back to the life you had before,” says Mark.

Steve was brought back to the States and eventually home to Syracuse, N.Y., — a two-and-a-half-hour drive from the family home — where he would spend a year in a coma. Initially, Steve was transferred to the VA in Boston, where the only way you knew he was alive, says Mark, was by the rise and fall of his chest, which was kept in motion by machine. When Steve finally woke, he was in a state of “locked-in syndrome.” “Cognitively, he was aware of what was going on, but he couldn’t move any of his extremities,” says Mark. “He couldn’t talk, he couldn’t eat, he couldn’t control his bowels or bladder. The only thing he could do was blink his eyes.”

The brothers made the best of the limited communication. Mark asked questions, Steve blinked code in response. The family was told that the injury would not kill Steve, but that the 20-year-old was beyond rehabilitation.

“Back then, there wasn’t a great deal of information about this,” says Mark. “Many patients with his condition didn’t live. It was about that time that soldiers with traumatic brain injuries were coming out of Vietnam. We had developed the medical science to keep them alive, but we didn’t have any intentions for their rehabilitation.”

In Steve’s case, the family saw a future of round-the-clock care. They would need to convert a living room in their home into a hospital room. They would need to feed Steve, manage his bowels and bladder, turn him, position him, and bathe him. And they would never again hear him speak. “We believed the conventional wisdom,” says Mark, which said that Steve would never get the signals from his brain to the muscles in his body. “This was just the way Steve was going to be.”

Mark cared for his older brother until he headed off to Geneseo with his high-school girlfriend, Sue Hess Ashley ’77 — both en route to Geneseo and a degree in speech pathology and eventually graduate studies that focused on cognitive deficits. At the time, Mark and Sue had no idea that their choice in studies would eventually put them on a path to change the course of Steve’s life.

Only later would the couple see how their research and work with patients could make a difference for people who, like Steve, suffered from acquired brain injuries — injuries resulting from accidents, strokes and trauma.

“It would be later that we would say there may be things that we could try with Steve and should try with Steve,” says Mark. “And that’s what we did.”

Signs of hope

Founding the Centre for Neuro Skills simply made sense to Mark Ashley. He and Sue had seen rehabilitative therapies work for patients suffering from acquired brain trauma. Their first experience with the then-experimental therapies took place as they pursued their master’s degrees from Southern Illinois University.

While working toward their degrees (Mark would later earn a doctorate from the same school), Mark worked for the first program of its kind in the world, the Center for Comprehensive Services in Carbondale, IL, a program that offered speech, physical, occupational and cognitive therapy to patients suffering from brain injuries. When one of the founders of the program tragically suffered his own brain injury and died as a result, the program temporarily lost steam.

But Mark and Sue had seen what these techniques could do for people like Steve. They saw progress. They saw recovery. And they began to study the ways in which occupational therapies and therapies for cognitive impairments could be applied to patients with acquired brain injuries — those who had normal brain function, but due to an accident or injury, now struggled to live as they previously had.

 

When a research job at the Walter Reed National Military Medical Center fell through for Mark due to a freeze on federal hiring, he and Sue headed to positions in Bakersfield, Calif., where they introduced the concept of communication aides in the practice and worked with children and adults with disabilities.

It was at this time that Mark had an idea. If a facility like the one he worked for while at the university could prosper in a town of 26,000, surely it would be successful in Bakersfield. He and two business partners found a 1,000-square-foot facility, took out three unsecured loans of $15,000 each, employed 10 people, and opened the Centre for Neuro Skills. They brought in three patients, including Mark’s big brother, Steve.

“We had him, and we said, ‘How can we make him better?” says Chris Persel, regional director of clinical services and director of behavioral programming at the Centre. “How can we make him more independent? How can we help him achieve his goals? And we built the program
around him.”

“In the early ’80s there was still a lot of experimentation in treating brain injuries,” says Mark. “We discerned early on that the Centre for Neuro Skills was seen as a novelty.” The therapies they were applying to this specific patient population were typically used in patients with other diagnoses, physical injuries, or cognitive disabilities.

“No one knew if what we did worked, so we measured everything. The idea was to stimulate the brain, just as you might with an atrophied muscle. For example, every time a patient does an exercise, the therapist quantifies the performance. How long did it take to complete? With what percentage of accuracy? How much distance did the patient cover? In what time? The team collects over 2,000 data points a week for each patient, allowing them to tailor their care for specific cases. Some of these measurements are recorded on what the Centre calls the Independent Living Scale. This system they developed is now on the federal Traumatic Brain Injury Model System’s COMBI site.

“Since then, after nearly 40 years of doing this, we’ve been able to study brain injuries and recognize what does work and what doesn’t work,” says Mark. “We’ve learned a great deal about the pharmacology that is effective and the pharmacology that is harmful.”

One of the biggest things they’ve learned is how the environment contributes to treatment and recovery. “The treatment settings that we utilize are very much like in anyone’s home,” says Mark. “That treatment setting is to our work what a surgical suite is to a surgeon or a dental suite is to a dentist.”

Mark and Sue speak with Centre for Neuro Skills Chief Operating Officer David Harrington.

Lasting impact

The Centre now has five locations in California and Texas, with 800 employees overseeing 600 patients each year. A sixth location is currently in the planning phase. A patient arriving at the Centre today is sent through a thorough medical history study to determine what treatments have been successful for them, and what treatments have fallen short. The staff then develops a treatment plan that might involve residential treatment or daily or weekly regimens.

A large part of the treatment, and an aspect that Mark and Sue believe is a rarity in the field — at least to the extent that the Centre conducts it — is counseling.

“Our patients get counseling usually every day for an hour, because they have a lot of issues related to their loss,” says Sue, who joined the Centre as a speech therapist in 1982 and is now the executive vice president for clinical services, overseeing patient programming and residential living. “They’ve lost their independence, they’ve lost physical ability, they’ve lost cognitive ability. A lot of times they can’t work anymore. I think they struggle with what’s socially appropriate. We do a lot of work in that area along with the behavior problems that need to be addressed. I think that that helps our patients accept what’s happened to them and move on, even though it’s still painful for them.”

That personal connection is important to the Ashleys. “It’s seeing the progress our patients make. It’s seeing people with severe disabilities leave with fewer or no disabilities. We get people back to work, and we’ve had them tell us: ‘You gave me my life back,’” says Sue. “It can be sad work sometimes, but it’s also very rewarding.”

Measuring success in data and charts helps to keep the doors open, so the field is convinced you’re doing it right. But success is also measured in those personal stories of the patients and their families.

Like the woman who drank champagne instead of taking her own life.

Like Katie, a junior Olympian, who was hit in the temple during a water polo tournament. She looked fine, but she was running into doorjambs and sleeping 20 hours a day, says her mother, Barbara. When Katie came to the Centre, she could read only at a sixth-grade level and had a one-minute attention span. Today, Katie is in nursing school.

Like Alan, a veterinarian and father, who took a fall water skiing that put him into a coma. “There was nothing about Dad’s condition when I first saw him that would have led me to believe everything was going to be okay,” says Alan’s son, Larry. “In fact, it looked like nothing was going to be okay.” Alan went from a wheelchair to a walker to a cane, eventually returning to his practice. He is now retired from a long and successful career.

Or the story of Steve, who, through work with the staff at the Centre, was able to find his voice again.

“We had to teach him how to find his respiratory musculature and control it, and we invented techniques borrowed from physical and occupational therapies to strengthen the musculature of the rib cage, to strengthen the diaphragm, to help him find and eventually control the vocal cords,” says Mark.

Steve regained the ability to eat, to drink, to control his bladder and bowels, and to move his extremities — after nine months of treatment. After a break of four months, and another nine-month stint at the Centre, he moved into his own house, a few doors down from his sister, a registered nurse. Steve had attendant care for two hours each morning and evening, but other than that, he was on his own.

“He could move his wheelchair around, he could prepare his meals, he could dial the telephone, he could talk on the telephone. He managed his money,” says Mark. “This wasn’t supposed to happen. The textbooks said this wouldn’t happen.”

But it did.

All of this for a man whose future looked like it would be spent inside his parents’ home, in a makeshift hospital room, confined to a bed with no means of communicating with those he loved except through blinking “yes” and “no” answers.

Mark and Sue work with patient Lane Kirk. “We get people back to work, and we’ve had them tell us: ‘You gave me my life back,’” says Sue. “It can be sad work sometimes, but it’s also very rewarding.”

Pain and pride

It wasn’t easy for Steve, for Mark, or for the family. It isn’t easy for any family seeking treatment at the Centre for Neuro Skills. When Mark was pushing Steve to keep with it 17 hours a day, seven days a week, their father was reluctant, and begged Mark to give Steve a break.

“He would say to me, ‘Leave the poor son-of-a-bitch alone,’” recalls Mark. “It just tore him up to see his son like this, and for me to be figuratively tugging on him just made him ache all the more.”

But Mark knew that treatment had to be intensive in order to retrain Steve’s brain, so he pushed forward despite his father’s misgivings. “The brain responds to stimulation,” says Mark. “If my brother was awake, we were doing therapy with him.”

When Steve — and the Centre’s growing number of patients — began to show progress, Mark’s father knew that he was pushing Steve for all of the right reasons. Mark, Sue, and the team at the Centre were helping Steve get some semblance of his former life back.

Today Steve isn’t here to see his brother’s success first-hand. One evening as he prepared to leave his apartment for a night out with friends, Steve suffered a second aneurysm in the same area of his brain. “He did not want us to keep him alive and he told us that,” said Mark, “so we made him comfortable and said good-bye.”

It was 1983 — three years after Steve had begun treatment at the Center for Neuro Skills. He had three years of an independence most people never expected him to have.

The elder Ashley wasn’t one for high praise. His father was of a generation, says Mark, that simply dug in and did what needed to be done without looking for a trophy. Coming from that generation, “they did everything themselves,” he says of his parents.

And maybe that’s what his father recognized in Mark’s accomplishments. Maybe that’s why Mark’s father found an old piece of wood, a telling quote, and some varnish to create a treasured gift for his younger son — the son who saw potential in his brother that others couldn’t see. The quote read:

“Never tell a young man something cannot be done. God may have put that person here to do it.”

Author: geneseoscene

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