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Losing the brain game

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There are times when it probably isn't 100 percent apparent that Tommy Weese is a survivor of Traumatic Brain Injury. If he's spent some time preparing, he can usually communicate unfettered for a good 20 to 30 minutes.

It's when conversations linger that some of those surefire symptoms of severe TBI pop up. His face will start to contort when he can't get his brain to continue spitting words out; he starts to stutter; his forehead wrinkles in frustration as he tries to keep his mouth and his brain working in tandem.

As his brain starts to tire, his speech begins to slur, his body language slows, and the very clear communicator who was talking starts to fade away.

Weese has spent the last nine years learning to cope with the effects of TBI after falling out of a car and hitting his head on a curb put him into a coma for three weeks. When he woke up, he had lost 10 years of memory, putting the Navy veteran back into the military emotionally.

"I was a smart son of a bitch in the Navy, but my brain injury messed with that," he said. "When I woke up, I felt like I was an E-6 again, but I was a civilian."

With TBI, it's particularly difficult to predict what functions the body will lose. Each injury affects the survivor differently - for some it means needing constant care; for others the impact is fairly minimal. Weese's case is quite severe. He had to relearn tasks he once took for granted, such as walking and reading.

After recovering in the hospital, he was placed in a nursing home. Still a relatively young man, Weese found it difficult to live in this environment. Over the years, he's started to win some of his independence back and now lives alone.

His modest disability check has him living in a single-wide trailer in a rural area of the Kitsap Peninsula - basically being a hermit of sorts. To pass time, he rolls his own cigarettes and smokes perhaps the equivalent of two packs a day. Weese spends his days surfing the Internet, managing three e-mail lists for TBI survivors, carving canes out of wood, and taking care of himself. These tasks equate to a full-time job and require quite a bit of daily effort. His brain often tires, and he has to take a nap to recharge.

Although he doesn't remember if he could cook prior to his accident, he's had to learn to do so.

"I'm still trying to learn how to cook on a regular basis, and I at least remember to eat regularly now. I spent probably two years eating only hot dogs," he said with tears in his eyes. "Now I'm becoming pretty creative. I can do a roast in a slow cooker, make pasta and even chicken breast."

Weese has stopped driving although he hasn't surrendered his driver's license. He takes public transportation to doctor appointments and has a friend who takes him grocery shopping.

He's elected to use civilian doctors rather than enroll with Veterans Affairs and receive care in Seattle or American Lake. Ultimately, accessing care through the VA would require quite a bit more traveling to get to appointments and filling out a multitude of paperwork - making the switch not too attractive.

The VA and the military are scrambling to make resources available for TBI survivors as it becomes the signature medical condition of today's battlefield - much like shell shock during World War II and Agent Orange during Vietnam.

Skip Dreps, government relations director for the Northwest chapter of the Paralyzed Veterans of America, said it's not surprising that veterans are opting for civilian care instead of care through the VA or military.

"We're not the experts in TBI; the civilian medical world is," he said. "We only have one center on the West Coast, and that's Palo Alto, and it has, like, 32 beds."

Rough estimates indicate about 4,000 Washington soldiers have survived TBI, which means 4,000 soldiers are competing for some 32 beds, and that doesn't even consider soldiers from Oregon, Idaho, California and Alaska. Despite these nightmarish statistics, military and VA officials are not waiting for the civilian medical community to save them. They are moving forward with plans to better serve the TBI populations returning from Iraq and Afghanistan.

Madigan Army Medical Center is instituting a new TBI program right now. It's expected to be operational within the next six weeks.

"Madigan has provided care for victims of Traumatic Brain Injury on a case by case basis since the beginning of Operation Iraqi Freedom. We are now moving to a systematic screening process that will identify soldiers exposed to blasts and other causes of brain injury and expand the range of services offered to them," said Col. George Giacoppe, deputy commander for clinical services. "Screening will take place as part of the Soldier Wellness Assessment Program process. Madigan's ultimate goal is to establish a comprehensive, multidisciplinary program for the treatment of Traumatic Brain Injury, including research into new forms of therapy."

The VA Puget Sound Healthcare System, too, is addressing TBI care. While Palo Alto is one of four clinics designed specifically for the most severe cases of TBI, Seattle is a secondary site to serve the Northwest region. It sees the less severe cases.

Dr. Jay Uomoto, director of the Center for Polytrauma Care in Seattle, said most patients are dealing with milder cases of TBI.

"We provide care for the more multiple concussion types of problems," he said. "Symptoms that don't immediately become apparent, but as patients face everyday situations, they start discovering memory and tension problems. There's a lot more of these cases than the severe TBI that you hear a lot about."

Because the center serves as a regional resource, much of the VA's job is about developing a plan of care and connecting with local providers if the patient isn't from the greater Seattle area.

"This might mean connecting with local providers in Onalaska or connecting them with Providence St. Peters, which has an excellent rehabilitation program," Uomoto said. "I think that's a huge challenge in the four state region."

Perhaps the most difficult battle the VA faces is getting veterans from outlying areas to come in and get the initial diagnosis, which is required to develop a care plan and to connect them with resources in their own community. Insurance also plays a role in whether the patient can be seen by civilians. If he or she has insurance through TRICARE West and is seen through the VA, referrals to civilian specialists are quite easy. Without insurance, care must be administered through the VA.

Recognizing the need to network among military, federal and civilian health care providers, Gene van den Bosch, executive director of the Brain Injury Association of Washington, is working to create partnerships that could ultimately lead to better care for TBI survivors.

"We have to redouble our efforts to reach people. Things have changed now, and the problems are so complex with fragmented health care systems and families that are frustrated with finding care," he said. "We see our role as a state advocate for more community-based services for TBI survivors, particularly veterans and their families."

Currently, the organization is a resource to help find or start TBI support groups and to help families connect with caregivers. Van den Bosch is looking for that role to escalate now that TBI is a widely recognized condition.

"These people with brain injuries are the walking wounded. You see them and they look normal, but you don't fully realize the nature of their challenges," he said. "We want to reach out to other agencies and organizations to collaborate to find ways we can work together to make sure people don't fall through the cracks."

The Brain Injury Association will be getting some help to accomplish that task with the passage of House Bill 2055 this session, which will set up a 24-member panel to study and address the shortcomings of the health systems in Washington when it comes to treatment of TBI survivors.

While roadside bombs seem to be the main cause of TBI among veterans, it can be caused from car accidents, gunshot wounds to the head, spinal cord injuries at the cervical level, and a host of other incidents.

Particularly with spinal cord injuries, TBI is often overlooked, Dreps said.

"It comes up in a majority of the spinal cord injury cases from Iraq and Afghanistan," he said, attributing the frequency of the injury to the design of body armor.

"The body armor contains the shock and directs it up to the head," Dreps said. "Think of it like a turtle. All you have is your shell to protect you, and your shell gets rattled."

Dreps was a paratrooper with the 173rd Airborne during Vietnam and sustained a brain injury in a parachuting accident. It wasn't until he took a battery of testing this year, some 35 years later, that it was discovered that he has TBI.

"My injury has been resolved over the years, and I've accommodated my injury," he said. "But I think we're going to see what we saw after Vietnam with Agent Orange. It's a train wreck. We're just not prepared to treat TBI. We're telling Congress and the VA to prepare for this, but they thought it would be over yesterday. They never thought this many people would live."

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