Understanding TBI

I get regular information on Traumatic brain injuries and thought this would help you get an idea of what it's like. I'm not in as bad shape is Mathew but the problems I've faced are similar. After eight years I've come a long way. Here's a link to the story so you can see pictures
http://news.medill.northwestern.edu/washington/news.aspx?id=83253

Courtesy of Lisa Schuster
Army Veteran Matthew Drake works with a therapist to relearn how to prepare a meal.

Relearning life: a 'new normal' for veterans with brain injuries

by Elizabeth Gibson
Mar 12, 2008

After surviving an attack by a suicide car bomb, Drake recovered at military facilities.

Drake's mother, Lisa Schuster, said he never lost his sense of humor and wit.

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Matthew Drake used to love cooking hot dogs for lunch.

It used to be easy. Now it isn't so simple.

As a soldier in Iraq, Drake was the sole survivor of a suicide car bombing that killed the other four people in his Humvee. He sustained a traumatic brain injury, and suddenly everyday activities like making hot dogs became too much for his brain to process, said his mother, Lisa Schuster.

Three and a half years later, at age 24, Drake can make hot dogs again, and he's independent enough to move into an assisted living apartment. Those are big deals, his mom said.

"There's a new normal for Matthew," she said. "But at least now it's a normal where we can find joy."

How does a man relearn how to make a frankfurter or to do any of those other pieces of life that bring a smile to his face? A year ago Drake moved into a privately run cognitive rehabilitation facility recommended by military staff to regain those pieces.

But cognitive rehabilitation -- the process of learning to compensate for, not necessarily heal, an injury that impairs thought processes – is not recognized by the military insurance company, Tricare, as a primary course of treatment, although it will cover some portions of the rehab. There is not substantial proof that cognitive rehabilitation works, according to a 2007 assessment by Tricare.

Most private insurance companies agree with Tricare, but the Brain Injury Association of America has repeatedly said cognitive rehabilitation is legitimate.

Although traumatic brain injury patients and their supporters say hospitals for the Defense and Veterans Affairs Departments have made strides in incorporating and improving cognitive rehabilitation, some say veterans also should be able to seek care from civilian companies as an additional step or as an alternative.

To receive civilian care, which costs hundreds of thousands of dollars for a year of treatment, veterans have to apply to the VA on an individual basis.

Drake's mother said cognitive rehabilitation at Quality Living Inc., a private facility in Omaha, Neb., was an invaluable piece of her son's care. And the VA paid for it.

"There is no downside to cognitive rehab," Schuster said. "With (a traumatic brain injury) the very essence of your loved one is so changed that you don't even know how to dream dreams anymore. My heart just started to despair, and I wondered if he could ever be happy again. I no longer fear that he can't be happy. QLI has shown me with the right support he can have routines where he can have purpose again."

Drake went through brain and skull surgery as well as rehab at military and veterans hospitals, and Shuster said the doctors did a wonderful job. Then, one of the military's patient advocate arms, the United States Special Operations Command Care Coalition, asked Schuster if she'd like to see a cognitive rehabilitation facility.

"We walked around this tour and I started to cry," Schuster said. "I just kept saying, 'This place, this place…' and Matthew finished the sentence for me -- '…is freedom.'"

Freedom can be as simple as relearning to open a hot dog package. Imagine trying to open that tricky plastic without the problem-solving skill to think to pick up a pair of scissors from the counter.

In cognitive rehabilitation someone would write up a series of steps (such as pick up the scissors) that Drake would practice until they became ingrained. The staff would slowly back out until Schuster's son could do it on his own. Repeat that sort of process 10 hours a day for every step of life – grocery shopping, getting dressed, remembering to shower, planning free time, volunteering at a YMCA and scheduling the next day every night.

It wasn't a miracle – Schuster doubts her son will ever fulfill his dream of finding a well-paid job to support the wife he hopes to meet someday – but after a year of rehabilitation, he can be left on his own overnight and make himself breakfast, Schuster said. Like most twenty-somethings, he craves independence, she said.

About 31,000 U.S. troops have been wounded in Iraq and Afghanistan, and the military estimates that almost one-third of troops sent home because of wounds have had traumatic brain injuries from blasts, bumps and accidents.

The Veterans Affairs Department alone estimates it will spend $573.3 million through 2017 on medical and rehab care for traumatic brain injuries incurred by the current generation of combat veterans.

The military has stepped up screening for brain injuries, checking in with phone calls to veterans and teaching courses on how to recognize signs of the wound.

The military opened a Defense Center of Excellence for Psychological Health and Traumatic Brain Injury late last year and estimates it will be fully operational by October, although Veterans Affairs and Defense already had a center focused on traumatic brain injuries.

Quality Living Inc.'s Clough said Veterans Affairs and Defense do a great job of taking care of the medical side of a traumatic injury, but might be holding onto veterans a little too long. Military life and veterans' hospitals are a separate world from everyday life, whereas private care helps veterans relearn how to function while in a civilian setting, he said.

Some private care facilities already have VA contracts to serve veterans, but Quality Living Inc. has been waiting more than a year for the department to approve a contract.

Veterans' activists said that when a veteran or soldier applies for civilian care the initial answer from Veterans Affairs and Defense is always no, but they said it has become increasingly easy to turn that no into a yes with a little prodding.

Military and veterans health care officials also disagree with Tricare and get around it by using their own funds to pay for such rehab, said Barbara Sigford, national director for Veterans Affairs' physical medicine and rehabilitation services. However, there is a gap where veterans are only covered by Tricare between when they leave the service and when their claim is processed by Veterans Affairs.

Sigford said the benefits are just hard to see on paper since cognitive rehabilitation is about coping mechanisms rather than physically repairing the brain, and it can be hard to separate what is responsible for progress in the long run.

Pfc. Andrew Parker said each soldier at the National Naval Medical Center outside Washington, D.C., works through cognitive rehabilitation at his or her own pace.

Parker would know: He's in the program.

At a gala to honor wounded veterans last month, it was hard to see a difference between guests without a traumatic brain injury and the well-spoken Parker standing straight in a sharp suit.

The 20-year-old from Maine discovered he had a traumatic brain injury less than a year ago. A bomb hadn't hit him, but Humvees had knocked his head a few times too many as he rode up top in his position as a gunner. His friends joked he was losing his memory, and then it slowly stopped being funny.

"It's a handicap," he said. "It might not be no legs, but it's almost like being retarded."

Now Parker is learning to use a notebook to plan and remember his day. His cognitive rehabilitation also includes computer tests of his memory and problem-solving ability.

Doing the tests makes his head hurt and he still can't score as high as an uninjured person, Parker said. The soldier said he's not sure if the rehabilitation will work as well for him as others but he hasn't given up yet.

Sigford said the military and veteran services, like the private sector, provide worksheets and therapists to work through tasks such as how to prepare a meal, and the agencies are training their staffs to incorporate cognitive rehabilitation into every aspect of the day.

Veterans Affairs has worked with cognitive rehabilitation since the 1990s, and it has made significant progress in recent years, according to patients and the Brain Association of America. The VA is providing as much as six hours of personalized rehabilitation a day at its hospitals, Sigford said.

Although some military officials and patient families say military cognitive rehabilitation hasn't caught up with the expertise and experience in the civilian sector, Sigford said that's just typical consumer sentiment – assuming the grass is greener on the other side.

Sharon Henderson, deputy director of the military's patient advocate Care Coalition, said some families go out to see civilian care facilities and decide they prefer the military camaraderie and specialized knowledge of combat wounds at veterans' hospitals. Others, she said, find private care to be a beneficial extra step.

Whatever the best way to help a patient, Henderson said, the official response should be obvious.

"When a solution is identified, the government has a responsibility to pay for it," she said. "There is no one-size-fits-all rehabilitation."

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The building blocks of a day

By Elizabeth Gibson
Medill News Service

Everyday tasks can be difficult to think through for a person with a traumatic brain injury because they often have impaired memory and problem-solving skills. From the perspective of his mother, Lisa Schuster, read how Army veteran Matthew Drake worked through rehabilitation for his injury at Quality Living Inc.
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At 9 p.m. Drake usually makes himself a milkshake. One day he finished drinking his milkshake, looked at his watch and realized it was about time to make his nightly milkshake. He couldn't remember or feel that he had just drunk one and started to make another. So the staff at Quality Living Inc. taught him to cross out tasks on a checklist as he completed them.
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Even putting on clothes had to be broken into steps. Sometimes Schuster used to tell Drake to change into his church clothes, but when he came out of his room he would still be in a casual outfit. He would get halfway into his church clothes, forget what he was doing and think he must have finished church and was changing out of his formal clothes.
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Part of Drake's job as a volunteer at a YMCA involved wiping down the equipment. He struggled to figure out how to juggle the cleaning supplies and free weights with a shaky hand, another side effect of his wound. Here's the routine he learned: set the rag down, spray it with cleaning fluid, set down the spray bottle, pick up the rag, leave the weights on the rack and wipe down the handles. Drake learned the routine quickly by his standards, his mother said. It took only about 10 repetitions; some processes require hundreds of practice runs to internalize.
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For a while Drake tried a job stocking produce at a grocery store. It was the same position he had in high school, so his job coach hoped he would catch on more easily. But even with a coach at his shoulder, the job was too much. People moved things and asked questions. "Are you getting more of these tomorrow?" would stump his memory. He had to give up on the job.
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After picking what he wanted to order at a restaurant, Drake would forget what he had selected by the time the waitress would arrive. When put on the spot he might order something he didn't like or that he couldn't eat with a shaky hand. Drake learned to cope by looking at menus online, printing them out and selecting a meal before leaving home.
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Since Drake also has trouble with his balance, he had to relearn how to navigate uneven sidewalks and potholes. Imagine walking down the sidewalk and not having the mental processes to think ahead and navigate around a ditch before getting there.

Note from me; so much of this is a reminder of where I have been. I remember going to McDonald's and getting confused every time. Just looking at the menu displayed above the counter was overwhelming.