Mind Over Matters
By Mark Morris
According to the Center for Neurological Studies, someone in the U.S. sustains a brain injury every nine seconds. You can do the math.
All brain injuries that are not hereditary are considered acquired brain injuries. One well-known type is a traumatic brain injury (TBI), which results from a car accident, sports injury, a fall, or other incident. The other type of acquired brain injury (ABI) results from events such as a stroke, encephalitis, a brain tumor, or other medical issue.
The effects of a brain injury are unique to each individual. The professionals who work with afflicted patients design individualized treatment plans for each patient. Everyone involved shares a common goal — to help the patient get back to their maximum level of function and independence.
HCN talked with three professional groups that work with brain injury patients at different stages of the recovery process. Those associated with these groups shared common thoughts on what they do and the underlying goals behind their work.
A brain injury is very often a life-changing event, they said. And those who work with those who have suffered such injuries dedicate themselves to helping patients get the most out of what could be considered their new life.
When a person suffers a brain injury, they receive their initial care at an acute care hospital such as Baystate Medical Center or Mercy Medical Center. The next step is a stay in a rehabilitation facility such as Encompass Health Rehabilitation Hospital of Western Massachusetts in Ludlow, where the typical patient may spend from seven up to 21 days, depending on the severity of the brain injury.
Because our brains affect all our physical and mental functions, evidence-based research has shown that a multi-disciplinary approach to treatment results in the best outcomes. According to Julie Bugeau, an occupational therapist with Encompass, their approach to care involves making sure the medical staff, along with the occupational therapist, physical therapist, and speech therapist work closely together as a team.
“Brain injuries are complex, so we need all these disciplines to make sure the patient’s needs are addressed,” she told HCN.
When brain injury patients arrive at Encompass, each one has a different level of severity, so the first few days are usually spent on developing a plan for recovery and preparing the patient for what they will encounter in therapy.
“In the beginning we spend lots of time educating patients and their families about what to expect with brain injuries and how the brain heals,” said Stefanie Cust, a physical therapist with Encompass. “We would like to get them up and walking right away but not everyone is ready for that so we may take a couple days to understand where they are and what they can do.”
In the beginning we spend lots of time educating patients and their families about what to expect with brain injuries and how the brain heals.”
Managing expectations for the patient and their family is an important part of the therapy process because everyone progresses differently and at their own pace. Bugeau said patients will often have a personality change and become easily agitated or inappropriate in the way they speak or interact with others.
“We don’t want families to get angry with their loved ones because they are acting in a certain way,” Bugeau said. “That’s why constant communication with the family and everyone on the team is critical to managing their expectations.”
A walk through the facility at Encompass reveals what looks like a large gymnasium with people working out on various machines. While standard fitness machines are part of the mix, there is also an array of specialized equipment designed to help people regain movement in areas of their bodies that were affected by brain injury.
Sometimes the equipment is as simple as parallel bars to aid in walking or a set of stairs. Other times high-tech equipment is used such as interactive touch screens to help the patient regain coordination, reaction time and cognitive abilities.
Cust and Bugeau demonstrated a Bioness H200 a device that fits on the forearm and is used to simulate normal wrist and finger movement for neuromuscular rehabilitation. By using a tablet, a therapist controls the H200 to aid the patient in opening and closing their hand. It’s also used to help build back wrist and hand muscles through repeated movements.
The goal of the therapists at Encompass is for patients to return home. Before patients are discharged, they leave with a recovery plan to help the patient going forward. A case manager gets involved to prepare the family and prepare the home before discharge. In many cases the patient will need outpatient treatment, whether at a facility or at home. Encompass puts patients and families in touch with community resources to keep moving toward recovery goals.
Finding a New Way
As late as the 2010s, patients with brain injuries in Massachusetts who required care beyond what they could get at home were mandated to live in nursing homes. A class-action suit resulted in creating two waivers, one for ABI and one known as a Moving Forward Plan (MFP) waiver. Both waivers make it possible for other organizations in the community to provide long-term treatment for people suffering from brain injuries.
Mental Health Association (MHA) created the New Way Services Division to specifically offer treatment for people with ABI. The agency owns nine houses located in communities in and around Springfield. Each residence looks like a typical family home and accommodates up to four adults.
“These residences are the person’s home for as long as they need it to be,” said Sara Kyser, vice president of the New Way Services Division at MHA. “While some folks are likely to spend the rest of their days there, we also have many people who gradually need fewer services and they are able to return to their families.”
Each person has an individualized treatment plan, most of which include regular visits from occupational, physical, and speech therapists. Nurses also visit each home to assist with such things as re-learning taking medication and other tasks. One of the homes is designed to be a transition step where instead of receiving highly intensive support the person is more on their own but still has a safety net.
“The goal is to bring people back to where they were or to a less-restricted setting,” Kyser said. “When possible, they can return to their family and still access outreach supports.”
One of those supports is The Resource Center (TRC) run by MHA. Serving as a day service, Kyser explained that this is where people can work on an array of interesting activities to help with physical and mental rehab in ways that don’t feel like therapy.
“Instead of squeezing a tennis ball, they are doing art projects, engaged in writing, and one of our most popular activities working on wood projects,” Kyser said.
While these activities provide physical therapy, they also help people work on their social skills. Kyser said impulse control is often affected by a brain injury, so learning how to interact with the world again takes some practice.
When HCN visited, staff at TRC were preparing gardening kits in time for planting season.
“The idea is for these folks to learn about and actually plant their own gardens at their own homes,” Kyser said. “They will then harvest and incorporate the fresh fruits and veggies into their nutrition program to bring the whole thing full circle.”
Striving for Improvement
ServiceNet is also a provider of long-term rehabilitative care. Through its Enrichment Center in Chicopee, ServiceNet runs the Strive Clinic to help those afflicted with brain injuries to continue to make progress in their recovery.
According to Ellen Werner, director of operations for ServiceNet’s Enrichment Center and Strive Clinic, the motivation for Strive became apparent after learning about people who were sitting at home with brain injuries who needed therapy.
“People with brain injuries need someone to encourage them to get up and move, otherwise they will just sit and do nothing,” said Werner.
Part of the recovery process also involves persuading people to try things when they don’t think they need to participate. Alyssa Bustamante, an occupational therapist with Strive, said that she and her colleagues try to make patients understand that recovery happens when all the therapies work together. Left to their own devices, patients will tend to only take part in their favorite activities.
“Everyone loves physical therapy, so they all want that,” said Bustamante, adding that one patient felt she didn’t need speech therapy because she just wanted to be able to get dressed. “This person had trouble sequencing the steps to get dressed, which is cognitively based, and speech therapy helps with that,”
Keeping active is essential to prevent brain injury patients from reaching a plateau and backsliding in their recovery. At the beginning of the pandemic many brain-injury patients lost therapy sessions. By the time they were able to return, Warner said that many came in deconditioned and could not do as much as before.
“They still had the foundation of the therapy, but they had lost endurance,” Werner said.
The Strive Clinic has adopted the motto of “Never say Never” to encourage patients to always set new goals in rehabilitation. As an example of that spirit, Werner and Bustamante discussed the case of a gentleman named Bill (not his real name.)
Bill had suffered a stroke more than 10 years ago, and had a below-the-knee amputation. Though he had a prosthetic device for his leg he wasn’t interested in leaving his wheelchair. Enrolled in the day program at the Enrichment Center, Bill would sit in the hallway outside of Werner’s office. When she would attempt to engage and ask, ‘What would you like to do today?’ Bill’s response was, ‘Shut up and leave me alone.’
Bustamante and Lexi Stockwell, a physical therapist with Strive also began speaking with Bill and gradually convinced him he was capable of more than just sitting in his wheelchair.
“At first, with help from others Bill could take about five or six steps on the parallel bars,” Stockwell said. “Now he can pull himself out of his wheelchair, grab the walker on his own and walk 50 feet. That’s big progress in a year.”
Bustamante said Bill has also developed better coping strategies and he speaks in more positive terms. “He’s finding the joy in himself and spreading it.”
Werner added, “Bill now refers to himself as the mayor of the Enrichment Center and he’s become an advocate for our program.”
Bill’s story is an example of how it’s never too late to make progress with a brain injury.
“Everyone needs to keep busy, especially people with brain injuries,” Werner said. “Just because someone says they don’t want help, we keep asking to see how we can get them moving and get them involved.”
Kyser spoke to a misperception that contends the first 90 days after diagnosing a brain injury is the real opportunity to make progress on a patient, but after six months that opportunity is gone.
“That’s baloney,” Kyser said noting that in the past, services didn’t exist after six months, so without engagement it was no surprise that the person was hitting a plateau.
The Bottom Line
Thanks to the efforts from agencies like Encompass, MHA and ServiceNet, brain injury patients are making progress every day re-gaining the use of their muscles, many can walk again, and, most importantly, live with independence after their injuries.
“There’s so much that can be done as long as the person is engaged in their therapies,” Kyser said. “My hope is as we’re getting better at this, we will see even more progress.”