It’s estimated that at least 7,000 Mainers live with long-term effects from brain injury. In an effort to assess whether those people are getting the help they need, the Acquired Brain Injury Advisory Council held three public hearings throughout the state. Patty Wight was at the final hearing in Portland yesterday, where nearly 70 people affected by brain injury came to share their stories, and offer solutions.
When Rorie Lee of Scarborough walked to her car one winter morning four years ago, it was a walk that would change her life. She slipped on the ice in her driveway, struck her head, broke three fingers, and spent the rest of the day in the emergency room.
“Well the first challenge was in having it properly diagnosed, because I was told I had a mild concussion–that there was nothing to worry about, that my hand would give me more trouble,” she says. “I was actually scheduled for follow-up for my fingers, but not for my brain injury.”
When Lee returned to her job as a medical education specialist, she says she had trouble performing. Weeks later, she was diagnosed with post concussive syndrome, which she was told would likely clear up in a couple months. But, she says, it never did. “I’m one of the 20 percent who don’t get over everything,” she says.
Eight months later, Lee had more tests and discovered that she had significant deficits in organization, concentration, and executive function – the ability to create a plan and carry it out. Lee says sometimes people question whether she actually has a brain injury, because she seems “too smart.”
But she says the effects of brain injury can manifest themselves in many ways. What’s clear, says Lee, is that the sooner a brain injury is detected, the better the recovery, and Lee thinks emergency health professionals need more training.
“You come in, you’ve fallen off your bike, you’ve struck your head. You have a broken leg, they focus on the broken leg,” she says. “I understand they have to stabilize you – they have to save your life first. But anytime someone has a traumatic injury like that, especially when the main presenting symptom is ‘I hit my head,’ there needs to be further investigation to find out if you have any lasting effects.”
“Brain injury is a relatively new disability,” says Gary Wolcott, associate director of the Maine Office of Aging and Disability Services. He says 30 years ago, most people didn’t survive severe brain injuries. But as medical technology has advanced, so too has the survival rate.
Wolcott says about 10,000 people get a brain injury every year in Maine. Most of those are concussions, and about 85 percent fully recover. But there are thousands who don’t, and they live with long term disabilities.
“So now we have a whole new group of folks that medical science has never dealt with before,” Wolcott says. “And so trying to build the rehab technology and build the infrastructure is a problem for every state in the country, not just here in rural Maine.”
And better infrastructure is exactly what people at all three hearings have called for. There are just nine rehab clinics across the state, and a waiting list for the state’s 124 residential care beds, which help brain injury patients transition from the hospital to more independent living.
Another prominent theme from the hearings is the need for better knowledge about brain injury – for medical health professionals, and for the general public.
“We’re normal people, but we do have different ways of learning,” says Troy Morgan, of Farmington. Morgan says he had an aneurism when he was six years old. He was in a coma for six weeks, and had to learn to walk and talk again. Years later he says he got a concussion while skiing, and last year, had a stroke as a result.
Since then he’s lost his apartment and is living with his parents. Now 43, Morgan says he plans to work again after he recovers from the stroke. But he says finding a job has been difficult, and cites a lack of transportation and a lack of understanding from many employers, to whom he offers this advice: “Learn what brain injury is and how important it is to help these people with brain injury to be successful in today’s society.”
Gary Wolcott says the Acquired Brain Injury Advisory Council will submit a report to the Legislature and the commissioner of Health and Human Services with key action steps in January. He points to past suggestions that have proved successful in the past, such as a bill passed last year that requires school districts to create sports concussion protocols.