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Group celebrates 20 years of supporting people with brain injuries, their ohana

July 11, 2014 - 11:42am

On the second Wednesday of the month, they gather to share stories, learn about resources and empower each other.

Inside Hawaiian Rehabilitation Services in Kailua-Kona, they freely speak about how they were injured, as well as their progress, breakdowns, breakthroughs and feelings about their new lives. With the help of invited speakers, they find answers to problems — from the physical, emotional and cognitive to the bureaucratic — that are hindering their independence and community re-entry. Other topics are also discussed, such as creating accessible homes, the healing power of music, vocational training and Hawaiian club swinging.

They are survivors, caregivers and advocates. All belong to the Kona Brain Injury Support Group, voluntarily facilitated by certified rehabilitation registered nurse and nurse life care planner Karen Klemme. This summer marks 20 years since the group’s inception, which began with a passing comment.

In 1994, Klemme was evaluating a Waimea woman in her mid-20s who received a traumatic brain injury during the delivery of her child. Klemme was tasked with identifying and facilitating options and services for meeting the needs of this woman a year after the trauma. Not only was the woman starting to walk and talk, she was going to take care of herself more and live in an ohana on her parents’ property.

During a meeting with the woman’s occupational therapist, Vickie Hoke of Hawaiian Rehabilitation Services, the lack of resources for those with traumatic brain injuries became apparent. That’s when Klemme made the comment, “What we should have is a support group.” Hoke, who now lives on the mainland, agreed it was great idea.

Klemme and Hoke founded the group, with support from Hawaiian Rehabilitation Services, particularly physical therapist Jean Thompson who allowed the group to meet gratis after-hours at the Hualalai Road space. The first meeting drew a dozen people. Nowadays, the attendance ranges from six to 40.

In 2012, Klemme and the Kona Brain Injury Support Group received the Brain Award from the state Department of Health and State Traumatic Brain Injury Advisory Board. The award recognizes the group’s dedication and commitment in supporting individuals with brain injury and their families.

For Klemme, the group provides “endless joy and ongoing energy.” She’s grateful for the opportunity to provide this community resource. She said it has become a caring, supportive place, where attendees gain hope, enjoy fellowship, network, share strengths and weaknesses, find solutions to concerns, and use skills that help build new pathways to the brain. The group links individuals to services, education and treatment, she added.

Wednesday evening, the Kona Brain Injury Support Group celebrated the milestone with an open house. The event was sponsored by Centre For Neuro Skills, which provides post-acute traumatic brain injury rehabilitation in California and Texas. Centre for Neuro Skills provided pupu and its Hawaii liaison Anastassia Hale made a presentation.

Hale defined a traumatic brain injury as a blow or jolt to the head or a penetrating head injury that disrupts the brain’s functions. However, not all blows or jolts to the head result in a traumatic brain injury. The severity of such injury ranges from mild to severe. Short- or long-term problems with independent function can appear, Hale said. Falls, followed by motor vehicle accidents, struck by or against events, and assaults, are the leading causes of these injuries, she added.

Males are about 1.5 times as likely as females to get a traumatic brain injury. The age groups at highest risk are newborns to 4-year-olds and 15- to 19-year-olds, Hale said.

Of the 1.7 million who suffer a traumatic brain injury annually in the U.S., 52,000 die, 275,00 are hospitalized, and more than 1 million are treated and released from an emergency department. In a year, 500 patients are treated at Centre for Neuro Skills facilities, Hale said.

During introductions Wednesday, several survivors offered lessons they’ve learned at the group and during their recovery. Among them: Don’t be afraid to talk; you’ll be surprised how many other people have been affected by a similar situation and want to help. Brain recovery is a marathon, not a sprint, and it gets better day by day. It’s not just about recovery, but discovery of other needs, skills and abilities. Know that, although your life will never be the same, that doesn’t mean life won’t be filled with joy and purposefulness. You’re living proof to never, ever give up.

Often there were moments of sadness, comfort, grace and humor at the open house. Ocean View couple Don and Martie Nitsche shared photos of the wreckage that changed their lives. On Easter Eve in 2008, the brakes of the water truck Don was driving failed. The vehicle went through some trees, over an embankment, took a nosedive, somersaulted several times and landed in a lava field.

“Looking at the scene, you would have thought he was going to be nothing but wet, squishy pieces,” Martie said. “He was found on the wings of angels laid out on lava.”

While most people spent that holiday looking for eggs, many Ocean View residents generously searched for Don’s watch, hearing aids, glasses and other personal items.

Don, 84, said he has no recollection of the accident. Sometimes he thinks his memory problems are more a result of getting old than a brain injury. Martie, 82, lovingly corrects this notion, explaining Don was diagnosed with post-concussion syndrome. It causes him to repeatedly ask the same questions and become easily upset when having to do two or more things at a time, she said.

The couple joined the Kona Brain Injury Support Group because they wanted to talk and learn more about what’s going on with Don. Martie spoke about how the couple struggled with communication. She said it was comforting to talk to others and exchange ideas. Like most attendees, they share their story while offering others advice and hope. With the group, they’ve found three priceless things: support, commonality and understanding.

To join the group or for more information, call Klemme at 328-9498.