From 2005: Family’s journey of undying love after brain injury caused by 2003 car wreck

Editors Note: This article was originally published on May 9, 2005, in the Lexington Herald-Leader.

Tina Portwood bustles around the small living room of her north Lexington home, stopping to tell her son Mark that she loves him as she brushes her fingers through his hair.

“My baby boy,” she calls him, even though he’s 25 years old.

Tina’s mornings are spent giving Mark his medicine, feeding him, bathing him and getting him dressed before his physical therapist arrives.

Throughout the day she tries to stay busy to keep from worrying or crying.

“I just want Mark to get the help he needs,” she said. “I want him to have the chance to improve.”

Tina and her husband, Eugene, have been caring for their son since he suffered a severe brain injury after wrecking his truck more than two years ago. Mark fell into a coma, spending more than a year in bed and losing control of his muscles. He can't do much of anything on his own.

Like Mark, there are about 200,000 Kentuckians who have head injuries, according to a 2003 University of Kentucky study.

It’s been a struggle for the Portwoods because they have limited income. Medicaid, the joint state and federal program that provides health care to the poor and disabled and long-term care for the elderly, has paid for Mark’s medications and hospital bills, but Tina and Eugene have had to cover other expenses. They depleted their savings, spending thousands on a hospital bed and a van equipped with a wheelchair lift.

The Portwoods join others without health insurance who are going after limited state resources for brain injury patients, including financial assistance for expensive medical needs such as wheelchairs or hospital beds. Families also are competing for limited spots in state brain injury recovery programs.

Tina said such programs are the “only shot” for Mark and others like him to have a close-to-normal life.

Brain injury services

In Kentucky, there are only two programs — the Acquired Brain Injury Waiver program and the Kentucky Traumatic Brain Injury Trust Fund — that offer financial support to families like the Portwoods, said Michele Finn, the government relations consultant for the Brain Injury Association of Kentucky.

She said both programs have more than a year-long waiting list and there are fewer state dollars available to help those with a brain injury, compared with those with other conditions, such as mental retardation.

In fiscal year 2003, the state spent more than $279 million on programs for about 447,000 people with mental illness or severe emotional disorders. More than $129 million was spent on mental retardation or developmental disability programs serving about 110,000 people. That’s compared with $7.2 million spent on brain injury programs for about 480,000 people, according to the Brain Injury Association of Kentucky.

The association, based in Louisville, has lobbied the state legislature for more General Fund dollars to increase services for those with brain injuries.

Finn said more money isn’t forthcoming because there hasn't been an aggressive effort to get the additional funding. The 2003 study was the first statewide survey involving brain injuries, said Finn.

The association has sent the study to the governor and plans to use it to gain support from legislators.

The state programs help families pay to make their homes wheelchair accessible, as well as provide assistance for rehabilitation and long-term therapy, counseling and medical supplies.

“It’s been like pulling teeth,” Finn said. “When talking to legislators about this problem, it seems to be falling on deaf ears.”

“It’s bad, mom”

Sitting in her living room just a couple of feet from Mark’s full-sized hospital bed and book shelves lined with medications and medical supplies, Tina is far removed from the conversations with legislators.

The 49-year-old gently places a photo of Mark taken before the accident on a side table. Her face shows signs of long nights and worry.

“If we could just afford to get Mark the help he needs ... He’s in there, we’ve just got to get him out,” she said.

Mark has already progressed more than doctors predicted.

In April 2003, he lost control of his white Dodge pickup on Old Frankfort Pike, running off the road and hitting a tree. Rescuers had to use the Jaws of Life to free him from the truck.

Tina recalls the panicked phone call from a family member and the short drive to the accident scene.

She recalls the twisted metal, the swarm of police officers and emergency workers, and the helicopter that airlifted Mark to the University of Kentucky hospital.

Then there was the look on the face of Johnny Portwood, one of Tina’s four sons. He had managed to get to Mark’s truck before police blocked off the scene. “It’s bad, mom,” he said. “It’s really bad.”

Mark’s infant son survived the accident with minor injuries, but Mark’s injuries put him in a year-long coma. His head was swollen and stretched to the size of a large watermelon. His eyes were hidden by a mass of puffy skin.

“It’s like any second we knew he was going to die,” Johnny said.

Doctors said the then 23-year-old would never wake up and asked Tina to consider stopping all medical treatment.

“I told them no, not until Mark tells me himself to give up,” she said.

Therapy is costly

The Portwoods said they didn’t realize how expensive and difficult it would be to care for Mark.

“Tina would give up everything to help Mark, and she has really,” said Gene Nochta, a nurse practitioner, who works with Mark. “It’s expensive and there's no help out there. But when it’s your child, it doesn’t matter. You’ll do whatever it takes.”

Tina quit her job waiting tables at a Winchester restaurant to care for her son. She brought him home after he spent about five months in the hospital. He was still in a coma-like state when he first arrived home.

Tina and Mark’s father, Eugene, who is on disability and can't work because of back and leg pains, received medical training to care for Mark. Doctors wanted to put Mark in a nursing home; his parents ignored the advice.

Not long after his homecoming, Mark began responding to Tina by blinking his eyes — once for yes and twice for no. Eventually, he started talking some.

“In my heart, I always knew he would be OK,” she said. “No matter what anyone said.”

Mark is still recovering.

He remains on a feeding tube and appears childlike, resting his head on the side of his wheelchair. It takes him minutes to complete a sentence. He speaks in a low robotic tone with long pauses between each word. Sometimes he loses track of his thoughts and doesn’t finish his sentences.

His emotions are gone. He doesn’t laugh or cry, but holds a stiff facial expression.

He can barely move his limbs. He can’t eat or use the toilet on his own. Some days he’s withdrawn and doesn’t respond to anyone.

Other days he forgets who the people are around him, including his mother.

State programs available

Tina and Eugene say they are doing their best to help with Mark's rehabilitation, but they think he will only improve through daily, aggressive therapy with professionals.

“We can only do so much for him,” Tina said. “I try to work with him, but I don’t really know what I’m doing.”

After being on the Acquired Brain Injury Waiver waiting list for more than a year, Mark began getting services through the program in January.

The Acquired Brain Injury Waiver offers three years of service, including physical and speech therapy, to adults between the ages of 21 and 65. About 45 people are on the waiting list for the waiver, Finn said.

Mark is still on the waiting list for the Kentucky Traumatic Brain Injury Trust Fund, which offers up to $15,000 a year to help with expenses related to the brain injury. If that assistance comes through, then Tina hopes to use the money to build a room big enough for Mark's hospital bed, with space for him to exercise.

For now, the brain injury waiver provides Mark with two days of physical therapy and four days of speech therapy a week.

But it’s not enough, Tina and Eugene say, adding that Mark needs to be accepted into a brain injury recovery program that can give him daily therapy.

“Just six months of daily therapy, that’s all I’m asking for,” Tina said.

There are several brain injury recovery programs offered by private facilities across the state. For instance, Cardinal Hill in Lexington offers rehabilitation for brain-injured people of all ages. Its inpatient brain injury program offers physical therapy designed specifically for the patient.

But Medicaid will only pay for programs, such as the one at Cardinal Hill, if the patient shows the potential to improve. That makes it difficult for patients like Mark, who are severely brain damaged, to qualify for the treatment.

Nochta, the nurse practitioner working with Mark, said more resources are needed in Kentucky to make sure that people with severe brain injuries get a chance at life.

“He needs rehab,” she said of Mark. “Will he improve? We don't know because he hasn’t been given a chance. Even if he doesn’t get any better, he deserves a chance.”

Tina and Eugene say they won’t stop trying to get more assistance.

“This is not like TV,” Tina said flatly. “Like in a soap opera where they just wake-up and are OK. It doesn't work that way. This is real.”

This story was originally published November 1, 2016 at 5:27 PM with the headline "From 2005: Family’s journey of undying love after brain injury caused by 2003 car wreck."