TWIN FALLS — Michael Howell doesn't remember a full week of this life.
In August 2008, he was four-wheeling with a group in the South Hills when his all-terrain vehicle fell off the edge of a mountain.
Howell had a seizure. He was transported by air ambulance to Saint Alphonsus Regional Medical Center in Boise, where he spent three weeks and underwent two brain surgeries.
“I don’t remember a whole week,” he said. “It’s pretty patchy. Your whole world is flipped upside down.”
Howell has a brain injury that borders between moderate and severe. He’s far from the only one in the Magic Valley.
Idaho ranks seventh nationwide for traumatic brain injury (TBI) hospitalizations and disability rates. Idahoans’ “risk-taking type behavior” contributes to the state’s high rate of traumatic brain injuries, according to Russ Spearman, principal investigator for the traumatic brain injury program at Idaho State University’s Institute of Rural Health. That includes outdoor activities like hiking, hunting, skiing, snowboarding, and motorcycle and ATV riding.
Despite the high rate, Idaho doesn’t have a state-funded program to help traumatic brain injury patients. For people in rural areas like the Magic Valley, resources and support can be especially scarce.
ISU’s Institute of Rural Health has received five consecutive federal grants since 2000 for a TBI program, with about $1 million per grant cycle. But many of the screening initiatives have focused on the Treasure Valley and eastern Idaho, leaving little for the Magic Valley.
“I definitely see some of the needs as being people not having access still to affordable health care,” Spearman said.
Conservative estimates show 1.4 to 2.5 percent of Idaho’s population likely has a TBI, Spearman said. That equates to more than 32,000 Idaho residents. But in the Magic Valley, with its rural setting and abundant agricultural work, he said the rate is probably much higher.
There’s no case management or coordination system in Idaho for TBIs, and no state money devoted to it. That leaves the funding in the hands of federal grants. Once the current four-year grant ends in May 2018, funding will be uncertain once again.
“It remains to be seen, depending on what Congress does, to see if there will be money to fund states,” Spearman said.
He thinks it’s just a matter of time until Congress asks why the state is not contributing money.
About half of U.S. states have trust funds to address TBIs, which are funded through sources like traffic ticket surcharges. In 2012, similar legislation failed in Idaho.
Another challenge for treating TBIs is identifying which patients actually have a brain injury.
“I’m certain that if we looked at the public school system, we would find the category of brain injuries are underreported in the state of Idaho,” Spearman said.
‘A bump, blow, or jolt to the head’
A brain injury, according to Centers for Disease Control and Prevention, is “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.” A TBI can be mild, such as a concussion, or range from moderate or severe. Spearman estimates 40 to 45 percent of injuries are in the mild range.
Idaho State University’s Institute of Rural Health released a TBI needs and assessment report in May that outlined the biggest challenges for patients and presented recommendations for how to address them.
The most common causes among ISU survey respondents were: motor vehicle accident (38.8 percent), other — including falls and sports injuries (34.5 percent), medical — such as a stroke or brain aneurysm (22.4 percent), violence (15.5 percent), bicycle (6 percent) and near-drowning (1.7 percent). Nationwide, falls are the number one culprit.
“It used to be that motor vehicle accidents were the number one cause of brain injuries, but that has shifted in the last two or three years,” Spearman said. “(Now) we’re seeing more brain injuries as a result of sports-related incidents.”
As a result, athletics from the professional to recreational level are raising awareness. There has been an infusion of money through the National Football League for concussion prevention and response.
In Idaho, a state law went into effect in 2012 requiring coaches, referees, athletic trainers, parents and youth athletes to receive information regarding signs and symptoms of concussions and head injuries.
TBI symptoms are similar whether the cause is a stroke, tumor, or injury, though the severity of the symptoms varies. Common symptoms include numbness, pain, sensory changes, delayed reaction time, challenges with attention and concentration, short or long-term memory loss, anxiety and vision changes.
“From an outsider looking in, they don’t see a broken arm or BAND-AID,” Wright said. “Every person is different. Every brain is different.”
Howell said he feels judgement from others, and is often asked why he can’t do what he used to.
“To us, it feels like we’re going 200 miles per hour,” Howell said. “We try to do the best we can. It can be very challenging.”
‘Trying to expose more resources’
For nine years since his brain injury, Howell — who graduated from CSI in 2007 and worked as a radiology technician at then-St. Benedict’s Hospital in Jerome — has searched for information about his condition.
The former Jerome resident, who now lives in Twin Falls, said he has used “Dr. Google” and visited different doctors to get their opinions.
“I try to take the positives out of everything and move on,” he said.
More than four years ago, Howell began asking around to see if there was any interest in starting a group for brain injury patients in Twin Falls.
There used to be one through Elks Rehab, he said, but the group doesn’t meet anymore.
He also noticed that when he takes his young children to parks, he would see people who have “some type of brain situation” using drugs.
Sometimes, medical imaging doesn’t show evidence of a brain injury, Howell said, and the person is left to deal with their symptoms without a diagnosis.
Ultimately, Howell decided to start his own group, creating a support system and a way to connect with others like himself.
Though he’s no longer a CSI student, Howell reached out to “old friends who helped teach me” at CSI for assistance in launching the group, which he eventually dubbed The Traumatic Brain Injury Group.
That includes CSI Foundation executive director Debra Wilson, student disability services coordinator Marita DeBoard, biology department chairman Bill Ebener and dean of students Jason Ostrowski. Office specialist Amy Barker coordinates scheduling and information requests for the group.
For Ebener, his involvement has been an eye-opening experience.
“Mike’s highlighting for me everything I need to be aware of as an educator in our community,” he said.
At the group’s first meeting in early October, 13 people showed up. Their brain injuries have a wide variety of causes, including car, motorcycle and ATV crashes, stroke, brain tumor, and concussions.
Howell said he thinks they’re all community members, save for one CSI student.
“I couldn’t believe how fast they opened up,” Howell said of the first meeting.
He has enough speakers — including doctors, therapists and teachers — to fill about two years’ worth of monthly meetings. The speaker at November’s meeting, for instance, is a neuropsychiatrist from Boise.
“I’m just trying to expose more resources out there,” he said.
Ebener sees in Howell the ability to make a long-term impact.
“Mike is a leader because he’s changing culture,” Ebener said. “He’s setting the stage for greater implementation of things.”
‘What the need is’
In all, Idaho State University received 175 survey responses to its TBI survey. The top needs, according to respondents, are more social support (29.1 percent), financial assistance (26.9 percent) and ombudsman services (26.5 percent).
A total of seven recommendations are included in the report, including more information for patients about employment services and resources, education about brain injury prevention, and providing information about financial assistance options.
“I think those recommendations really speak to exactly what the need is,” Spearman said.
Most of the survey responses were from Ada County, which includes Boise. There’s no statewide database of TBI patients, so ISU relied on support groups and its own screening records.
Idaho was among 19 U.S. states to receive an award during the latest round of grant funding from the Administration for Community Living.
The current grant in Idaho focuses on reaching uninsured and underinsured adults, specifically by providing TBI screenings at community centers and churches.
Since 2014, ISU has screened 497 people with suspected brain injuries.Thirty-eight percent tested “likely” to have a TBI. Of those, three out of four had no health insurance or primary care doctor, and were referred to community health clinics.
Finding additional help, though, can be a challenge. There’s a Boise-based nonprofit called the Brain Injury Alliance of Idaho, but leaders didn’t respond to an inquiry from the Times-News.
Here in the Magic Valley, St. Luke’s is the region’s lone option for treatment.
‘Rehabbing at home’
Isaac Johnson, 18, and his mother, Kiele Whitney, were among the attendees at the October TBI meeting at CSI.
In April, Johnson — who was finishing up his first year studying at CSI — was involved in a vehicle accident.
He was transported to a Pocatello hospital, where he spent 16 days in the Intensive Care Unit and was incubated because he wasn’t breathing on his own. He was in a coma.
On the second day in the ICU, the prognosis wasn’t looking good.
“We were told with this type of injury that he probably would not wake up,” Whitney said. Still, she chose to have hope.
A few weeks later, he gradually began to wake up. His first method of communication was giving a thumbs up.
After seven months at a long-term acute care hospital in Boise, Johnson spent another two months at Craig Hospital in Colorado, which specializes in brain and spinal cord injuries. His first week there, he talked to his mother for the first time since the accident.
The medical providers were trying to get him off a feeding tube and Whitney was holding a bottle with milk. Johnson tried to grab it from her and said “milk.”
After that, he whispered for an entire month.
Now, eight months later, Johnson is undergoing physical, occupational and speech therapy three days a week through St. Luke’s Magic Valley Medical Center. His therapy will soon increase to five days a week.
Soon after her son’s injury, case managers helped Whitney sign up for Medicaid, which allowed more therapy sessions to be covered by insurance.
Johnson has a TBI, so Whitney was excited to hear of Howell’s group. She had been looking for a support group for caregivers, but couldn’t find anything in the Magic Valley. She’s a member of a Facebook group, but said it’s not the same as meeting in person.
While her son was in Colorado, Whitney reached out to a friend who works at St. Luke’s rehabilitation. During a visit home to the Magic Valley, she took a tour and got more information. After four months in different hospitals, Johnson was finally able to come home to Filer.
Once home, Whitney opted for Johnson to have outpatient rehabilitation services through the Gwen Neilsen Anderson Rehabilitation Center.
“I decided rehabbing at home would really be a great thing,” Whitney said, lamenting the benefits of being surrounded by family members and a support system.
Johnson has hemiparesis, meaning the left part of his body is not moving, and he’s in a wheelchair.
He had to re-learn how to sit and hold his head up, and he’s working on his core strength so he’ll be able to transfer himself into and out of his wheelchair.
“The big goal is to eventually walk again,” Whitney said.
Johnson’s voice is slurred because of weakness and discoordination of his facial muscles, Whitney said. During speech therapy, he has been focusing on articulating words.
Johnson hasn’t been able to laugh or show emotion, Whitney said, but recently, she can see emotion in his eyes and is starting to see him smile again.
In the meantime, Howell’s group has provided both Johnson and Whitney with a community of people who are working through similar challenges. When those challenges are as steep as Johnson’s, empathy can function as a beacon in a dark place.
“There was a pretty good turnout, and it has the potential to be a great group,” Whitney said. “It can feel discouraging when they feel alone.”
‘When in doubt, sit them out’
At St. Luke’s Magic Valley emergency department, it’s fairly common for a patient to come in with a suspected brain injury.
Those injuries, according to Dr. Kevin Kraal, medical director for emergency medical services, tend to occur in younger people, since they’re more active.
It’s also seasonal, he said. The leading cause for boys tends to be football, while soccer is the leading cause for girls. He also sees rodeo injuries, a culprit that is more specific to the Magic Valley.
Dr. Chad Johnson, a sports medicine physician at St. Luke’s Magic Valley, treats concussions — mild traumatic brain injuries — in his practice.
“Sometimes, we have multiple concussions in a kid or adult that may have lingering symptoms,” he said.
He sees a higher prevalence of TBIs in “collision sports” like football. Plus, he’s seeing more injuries these days from cheerleading.
Athletic trainers on the sideline provide an immediate evaluation when an athlete is hit in the head. The motto, Johnson said, is “when in doubt, sit them out.”
Still, diagnosing a TBI is not a simple task.
“A lot of the symptoms that are experienced with a mild traumatic brain injury are generic,” Johnson said.
Generic symptoms — like headaches, irritability, and sensitivity to light and noise — become more relevant when the patient has received a recent blow to the head.
During the initial visit to St. Luke’s, patients answer a 20-to-30-question health questionnaire. Dr. Jonathan Myers looks for objective findings during a physical exam, such as changes in balance or reflexes. A CT scan is often taken to rule out a brain bleed.
For more severe injuries when there’s a brain bleed, patients are normally flown to Saint Alphonsus Regional Medical Center, where they will go through an in-patient rehabilitation process.
For mild cases, if patients are having residual symptoms, they may get an MRI several weeks down the road if they’re not getting better.
Johnson encounters many high schoolers in his clinic. Beyond the expected academic accommodations, TBIs also carry heavy social and athletic burdens for high schoolers.
“It’s really hard on a kid who doesn’t have a cast or crutches to stay on the sidelines,” Johnson said. “We have a ways to go in society to recognize that it’s as a big of a problem as it is.”
‘I won’t be who I used to be’
After his ATV accident, Howell went back to work for 5 1/2 months, where he says he faced judgement and harassment.
He said his supervisor told him he was giving the department a bad reputation and wanted him gone.
Howell said he was eventually fired because he couldn’t do his job. But initially trying to go back to work, he said, helped with his disability benefits hearing.
Howell is married and has two young children, under age six.
“It’s not just the patient themselves that are hurt,” he said. “It’s everyone around them.”
Howell makes a daily “to-do” list of items he’s working on to better himself and his family. If he doesn’t accomplish what’s on his list, he carries it forward to the next day.
At one point, he was taking 13 or 14 pills each day. Now, he’s down to three. He said he’s “anti-med” and tries to improve his condition through other means, such as exercising and gardening.
Howell has a small garden in his yard and he gives away extra produce like carrots and zucchinis to his neighbors.
He’s allowed to drive, but tries to minimize the amount of time he spends on the road. His wife drives him to the monthly TBI group meetings, which happen at night.
Howell has been asking around for TBI pamphlets to hand out to his group members. He said he likes pamphlets because they’re a reminder of where he was and how far he’s come.
“I know I won’t be who I used to be,” he said.
During recovery, trials and struggles are abundant. But what keeps Howell optimistic and progressing, he said, are the “positive things and enlightenments” he finds along the way.