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Business of Aging

Team Approach

By Mark Morris

the Bioness L200

This device, the Bioness L200, helps patients recovering from a brain injury to re-establish the use of their arms and hands.

In the U.S., 2.5 million adults and children sustain a traumatic brain injury (TBI) every year.

The Brain Injury Assoc. of America (BIAA) reports that more than 2 million of those injuries are treated in emergency departments, while approximately 50,000 result in death. Nearly 280,000 are admitted to hospitals, after which patients transition to inpatient rehabilitation, where the goal is to get back to their maximum level of function and independence.

But what’s involved in that rehabilitation process for brain injuries? It depends on the patient.

“Many people associate traumatic brain injuries with a younger population because they tend to engage in riskier behaviors. Older people who hit their heads from slips, trips, and falls are also susceptible to TBIs,” said Jennifer Blake, an occupational therapist with the inpatient program at Weldon Rehabilitation Hospital, adding, however, that anyone at any age can sustain a brain injury.

The Centers for Disease Control and Prevention (CDC) defines TBI as a “disruption in the normal function of the brain that can be caused by a bump, blow, or jolt to the head, or penetrating head injury.“

Traumatic brain injuries are evaluated on a spectrum, said Blake, noting that someone who experiences a concussion, also known as ‘mild traumatic brain injury,’ can usually return to normal with just limited therapy. On the other hand, people with moderate to severe brain injuries require medical care and more comprehensive inpatient rehabilitation. Often these patients need some level of supervision after discharge.

On occasion, someone may have a head injury and not immediately recognize it. For example, if a person is in a car accident and has a broken leg, that might get the primary treatment focus, Blake explained. Even after a CT scan, the brain injury may not initially show up. “It’s only after further investigation, when the person is having trouble concentrating or paying attention, that they discover the brain injury.”

“When they see their arm move and their hand open and close, it boosts their confidence and makes them feel more hopeful; you can see it in their faces.”

Because our brains are essential to all our physical and mental functions, therapists have found that taking a multi-disciplinary approach yields the best results in helping people recover from a brain injury. A team of physical therapists, occupational therapists, and speech pathologists, supported by 24/7 care by medical staff such as nurses, doctors, and pharmacists, make sure all the patient’s needs are addressed.

“We meet once a week to make sure we are all on the same page,” said Julie Bugeau, an occupational therapist for Encompass Health Rehabilitation Hospital of Western Massachusetts. “We have an open discussion to determine where the patient is in terms of therapy and function. We also ask questions outside of the therapy, such as, ‘how are they medically?’ ‘Are they eating well?’ We try to look at all the factors that can affect their rehab.”

What’s the Plan?

Blake said most admissions in the inpatient setting last only two weeks, so working as a team helps them determine the patient’s eventual discharge plan.

“By working together in an interdisciplinary team, we can figure out what’s working, what’s not, and make changes along the way.”

Blake said an individualized plan for rehabilitation is developed by therapists who work with patients in three key areas:

• The physical therapist studies a patient’s mobility: for example, how well they can get from one place to another, their balance, and how well their motor skills can function;

• The occupational therapist helps patients with self-care skills, such as eating, getting dressed, bathing, as well as tasks like cooking, cleaning, and managing medications; and

• The speech and language pathologist addresses higher levels of cognition, such as memory, attention, concentration, problem solving, and decision making. Sometimes the pathologist works with patients whose brain injury causes dysfunction in producing or understanding language.

Advancing technology offers therapists tools to aid in rehabilitation that were not available years ago. Bugeau discussed how devices such as the Bioness L300 and H200 help brain-injury patients regain the use of their legs and arms. The L300 attaches to the leg and, through electrical stimulation, can aid a person’s ability to walk.

“The idea is that, with repetition, those leg muscles will be able to move properly without the external stimulus,” she explained.

Meanwhile, the H200 helps re-establish the movement of arms and the grasping action of hands. Bugeau said using these devices results in positive responses from her patients.

help brain-injury patients

The Bioness L300 is used to help brain-injury patients regain their ability to walk through electrical stimulation.

“We’ll have patients who say, ‘my arm doesn’t work — I have a dead arm,’” she noted. “Then, when they see their arm move and their hand open and close, it boosts their confidence and makes them feel more hopeful; you can see it in their faces.”

By employing the different therapies, Bugeau went on, the hope is to maximize the patient’s abilities. But, she added, “while the therapy is important, rest is also an important part of the recovery.”

While many patients transition directly from inpatient to outpatient care, Bugeau said Encompass also offers a home-care component for those who are not yet ready to make the move.

“We will help patients settle into their home and continue training with them and their families to make sure they are safe and getting stronger,” she said. “It’s an option we recommend until the patient is ready to move into outpatient treatment.”

Blake added that the outpatient phase of care at Weldon involves working closely with families during outpatient therapy to help them manage that part of the process.

“Let’s say a patient is receiving all three therapies in an outpatient setting,” she explained. “We will try to schedule all of them on the same day to make it a little less overwhelming for the caretaker.”

Blake said it’s important for the injured person and their support group to understand that, when a person suffers a brain injury, it can be a difficult adjustment for everyone involved.

“You can’t see the residual impairments from a brain injury,” she said. “The person might experience a personality change, or a once-independent person may now need lots of assistance with daily life.”

That’s why Bugeau’s staff involves the patient’s family in training and education early in the process. She said the classes help the family understand how their loved one’s brain injury is progressing and how to properly handle behaviors that are out of the norm.

“We make sure to screen every patient with a brain injury for depression because it is a such a common symptom associated with brain injuries.”

Steady Improvement

While plenty of information and support are available for families, Bugeau said the trick is not to overdo it.

“We create a folder with specific, individualized information that is appropriate to the patient’s injury. We don’t want to overwhelm the family, but we want to make sure they have the information they need.”

Blake and Bugeau encourage families dealing with a brain-injured loved one to take advantage of the support groups available at their respective organizations. Weldon offers a faith-based group as well. Both therapists also cited the Brain Injury Assoc. of Massachusetts as a solid resource for families.

In all cases, the goal is helping patients with a brain injury get back to a maximum level of function and independence.

“It’s hard to say how much time each person needs,” Blake said. “And while things can change quickly or gradually, people do improve and get better.”

Business of Aging

And the Road to Recovery Program Needs More of Them

Ray Bishop, left, with cancer patient Norman Clarke, says volunteers helped him overcome illiteracy, and this inspired him to be part of the Road to Recovery program.

When asked how he came to participate in the American Cancer Society’s Road to Recovery program, which recruits volunteers to drive cancer patients to medical appointments, Ray Bishop was more than ready to answer that question.

He grabbed a book he had with him and quickly pointed to a passage within it while explaining that, 20 years ago, he couldn’t have read it — because he was essentially illiterate.

With help from literacy volunteers, he was able to put that embarrassing problem — one that he somehow managed to hide from others — behind him. Those volunteers gave him a precious gift, he said, but also something more, the firm desire to pay that kindness forward.

“If volunteers can help me, then I can volunteer to help others — that was my thinking,” said Bishop, as he talked with BusinessWest in the waiting room at the Sister Caritas Cancer Center at Mercy Medical Center. He was there with Norman Clarke, a West Springfield resident he has driven to that facility several times over the past year or so.

Now battling stage-4 cancer that has spread from his gallbladder to his liver, Clarke says he will go on fighting the disease, through aggressive chemotherapy treatments “that won’t stop until I tell them I can’t take it anymore.”

To fight this fight, he relies heavily on the Road to Recovery program and people like Bishop, many of whom have what amount to backstories when it come to their volunteerism and, specifically, this particular program. Indeed, many have loved ones who have battled the disease, and some have fought it themselves.

But others, like Becky Mason, simply have some flexibility in their schedules and found an intriguing and quite rewarding way to take full advantage of it.

“I was looking for a volunteer opportunity,” said Mason, who has been driving for just a few months now. “They had a table for the Road to Recovery program at a breast-cancer event I attended recently with a friend. I knew there was a large need because I’ve had a few friends who have had different types of cancer, and in talking to them, one of their biggest concerns, beyond getting well, was all their appointments and how they had to go here and there. And they can’t drive, obviously.

“I never really thought about it, because I never had to go through it myself,” she went on. “But it is definitely a stressor in their lives to make sure they have the rides to and from.”

Kelly Woods says there is a strong need for new drivers for the Road to Recovery program to meet demand for the service.

There are more than 75 volunteers (50 who would be considered active) working to help relieve this stress by donating time and energy to the Road to Recovery program for the American Cancer Society’s Northwest Region, headquartered in Holyoke, said Kelly Woods, senior manager for Mission Delivery at that office, adding that each one has a different story, a different motivation for getting involved.

“Sometimes they’re cancer survivors or they have someone in their life who’s a survivor and they want to give back, or there’s someone they lost and that they want to honor,” she said, adding that, through November, volunteers provided roughly 1,000 rides in the four western counties. “But there are also individuals who are just looking for something meaningful to do; each story is different.”

Behind all their stories, though, is an even bigger one, said Woods, who told BusinessWest there is now a critical need for more drivers to meet the number of requests for assistance pouring into the agency. Among all the statistics she has regarding this program — and there are many — perhaps the most eye-opening, and easily the most concerning, involves how many requests the agency is not able to honor.

“Last year, in Hampden County alone, there were a little more than 300 rides that we could not meet,” she said, adding that, over the past few years, the program has lost some drivers due to what she called “natural attrition,” a situation that has actually led to fewer requests for rides.

This has left the local chapter in what she termed a rebuilding mode, meaning it is actively recruiting new drivers, with the goal of being able to meet more requests, thus generating more referrals down the road, as they say.

For this issue, BusinessWest takes an in-depth look at the Road to Recovery program, the drivers who are its life blood, and the critical need for more volunteers to step forward.

Driving Force

Mason works as a project manager for a company called Test America, which tests water and soil. Her duties fall largely within the realm of customer service, she explained, adding that she’s often on the phone with clients discussing scheduling or test results.

While there’s always plenty to do, there is room for flexibility with her schedule, she went on, adding that she had this flexibility firmly in mind when she learned about the Road to Recovery program and started considering whether she could become a part of it.

The more she learned, the more intrigued she became. She learned, for instance, that drivers can essentially choose their assignments and how many they take on — at least a few times a month is requested. She was intrigued by the mission, impressed by the level of training that drivers must undertake (more on that later), and motivated by the obvious need for more volunteers.

Becky Mason has been driving just a few months, but she already finds her participation in the Road to Recovery program very rewarding.

And just a few months in, she can say it’s been an extremely rewarding experience.

“It gives me warm fuzzies when I do it,” she explained. “I like to help people, and I feel that when I do this I’m making a good impact on the world, I’m doing a good deed that is making a bright spot in someone’s life. I can’t change the world, but I can at least help one person with one small thing that they couldn’t get done.”

With that, she pretty much spoke for everyone who has been part of this program, said Woods, adding that Road to Recovery has been a big part of the landscape at the cancer society for decades now.

At the heart of the program lies a very basic need. Indeed, cancer care has improved exponentially over the past several decades, but it is a simple fact that, in most cases, people need to travel to receive treatments — often several times a week and even daily, as with radiation treatments.

And a good many of them, even those with family and a strong core of friends, need help getting ‘to and from,’ as Mason put it.

“These treatments can last several months, and then there’s follow-up appointments,” she explained. “Even for people with a good family network and friends, that gets tapped after a while. It may be that at the beginning they don’t need any help, but as time goes on, they do.

“And sometimes, we just serve as that ‘in-between,’” she went on. “Radiation treatment is six weeks — that’s 30 rides. They may be able to parcel 20 together, but they may need us for 10. And sometimes, we do all 30 because people don’t have a support network.”

To become a volunteer, one must obviously have a vehicle, a valid driver’s license, and a good driving record, said Woods. But they must also undergo a screening process and some training, the former involving a criminal background check and the latter including everything from using something called a service match portal computer to pick and schedule assignments to understanding the many rigid privacy laws now on the books.

“It’s great for the drivers, because there’s flexibility,” Woods said of the match portal. “They can log in as often as they want, and the system communicates with them and sends them e-mails if there are requested rides in their area.”

But there are some things that cannot really be taught, she told BusinessWest, noting that drivers essentially have to learn how to share time — and a front seat — with someone going through perhaps the most difficult time of their life.

Elaborating, she said they have to get a feel for what to talk about and when, knowing that cancer patients have both good and bad days.

Bishop, who drives two or three times a week, a schedule he’s maintained since he retired five years ago, said he learned this early on. He also learned that many patients do like to open up about their condition, their treatments, and life in general.
“They talk to me more about their stuff than I think they do with their own families,” he said. “I’m kind of like a second doctor sometimes; they’re not afraid to talk about it.”

Clarke said that individuals like Bishop are more than drivers; they’re companions and good listeners who help take some of the stress out of an already very stressful and difficult time.

“A lot of the people who drive me have been through cancer or have seen a family member affected by it, and that’s why they’re doing it,” he said. “I can’t thank them enough — they take a lot of stress off my wife; I do this to break it up so that she can have a life without running me back and forth all the time.”

The Ride Stuff

Moving forward, the biggest challenge is to recruit more drivers and thus reduce the number of requests that could not be met, said Woods, adding that, while there are many retirees within the current roster of drivers, one doesn’t have to wait until they’re done working to be a part of this program.

Indeed, she said a number of college students drive, as well as those who work second or third shift, like police officers and firefighters, and those like Mason — and Woods herself — who have some flexibility in their schedules.

The only real requirement is to be able to drive between 8 a.m. and 5 p.m., when most all appointments are scheduled, she said, adding that those interested in volunteering can call (800) 227-2345 or log onto cancer.org for more information.

If they do call that number and become part of this special volunteer force, they will find a way to give back that is rewarding on a number of levels, said all those we spoke with.

They’ll discover, as Mason did, that while they can’t change the world, they can help one person in a very meaningful way.

George O’Brien can be reached at [email protected]

Opinion

Opinion

By Christine Palmieri

September is National Recovery Month. ‘Recovery’ is a word that gets used a lot in the world of mental health and addiction services, sometimes so much so that I think we can easily lose sight of what it represents. In my role with the Mental Health Assoc. (MHA), I often have the opportunity to talk to newly hired staff about the idea of recovery. We discuss what it means and what it can look like in the context of working with people who have experienced trauma, homelessness, psychiatric diagnosis, and substance problems.

When I ask new staff the question, “what does it mean to recover?” I frequently hear things like “getting better” or “getting back to where you were” or “having a better quality of life.” Although I tell staff there are no wrong answers to this question, secretly I think there are. They’re common and easy, but insufficient.

As with many things, I think it’s easier to talk about what recovery is by defining what it isn’t. For me, recovery isn’t a cure. It isn’t a finish line or a place people get to. It isn’t a goal that can be neatly summarized in a treatment plan. I believe recovery is a process that is unique and intimately personal to the individual going through it. Ultimately, though, I think the answer to the question “what does it mean to recover?” should be “it isn’t for me to say.”

I believe recovery is a process that is unique and intimately personal to the individual going through it.

As providers of services, or as loved ones, community members, and policy makers, I don’t believe it’s up to us to define what recovery means or looks like for people going through it. Each person needs to examine and define what it means to them. For the rest of us, I think the more important question is “what makes recovery possible?” When the question is posed this way, we are able to engage this idea of recovery in a much different and more productive way. This question offers the opportunity to share the responsibility and partner with those we support.

The analogy of a seedling is often used when describing this process of recovery, and one I use when I talk to our new hires about their roles and responsibilities as providers of service. Seeds are remarkable little things. For me, they represent unlimited potential. A seed no bigger than a grain of rice contains within it everything it needs to grow into a giant sequoia. But no seed can grow without the right environmental conditions. No amount of force or assertion of control can make a seed grow. It needs the right soil, the right amount of water, and the right amount of light.

In the same way, within each person who has experienced trauma, homelessness, psychiatric diagnosis, or problems with substances, I believe there lies unlimited potential for growth, and each person needs the right environment for the process of recovery to take place. As providers, loved ones, community members, and policy makers, we very often control that environment. Metaphorically, we provide the soil, the water and the light.

Soil is the place where recovery begins. It offers a place for the seed to grow roots, to gather strength, security, and safety. Soil is what keeps trees rooted tightly to the ground through storms. It is our responsibility to offer environments where people in recovery feel safe and secure, to try out new ways of coping and new ways of managing the difficulties and challenges that life presents to all of us.

Water provides a seedling with essential nourishment. We need to find ways to support people in recovery to discover what truly nourishes them. The work of recovery is hard. It requires taking risks and feeling uncomfortable. We cannot do the work of recovery for anyone else, but we can and should work to help people in recovery find the supportive relationships, meaningful roles, and reasons to do that hard work.

Light provides the energy necessary for growth. In recovery, I believe light is offered through the hope and understanding that every person has within them the potential to live a full and active life in the community, whatever that means for them. As providers, loved ones, community members, and policy makers, it is our role to shine the light of hope for people who have experienced discrimination, loss of power and control, and in many cases a loss of their identity. We hold this hope and offer this light because we know, without question, that recovery, however it is defined, is not only possible, but is happening, right now, all around us.

Christine Palmieri is vice president of the Division of Recovery and Housing at MHA.