Italian trip shed new light for Steffens

Arm, hand stretching therapy pays off

By FRITZ BUSCH

Journal Staff Writer

SLEEPY EYE -- On June 9, 1999, Emily Steffens suffered multiple injuries including brain damage in a motor vehicle accident at the intersection of U.S. Highway 169 and State Highway 19 while returning from college visits with schoolmates in the Twin Cities

She was an acute care patient at North Memorial Hospital in Minneapolis before she came out of a coma. Much of her right side remained paralyzed.

He came home in September 1999 and was unable to move her right arm. Initially, she had therapy five days a week. That was later reduced to a hour each of physical, occupational and speech therapy three days a week.

In December of 1999, the Twin Cities doctor working with Emily told the Dobsons she had advanced as far as she could.

That statement prompted her parents, Larry and Emily Dobson of Sleepy Eye, to find their own rehabilitation program for their daughter. Since that time, they have gone to great lengths to find it.

Larry began taking online and Minnesota State University college classes in psychology and biology to better understand his daughter's medical condition.

"I wanted to get a better understanding of brain injury and what could be done," Larry said.

Eighteen months ago, the National Institute of Health, a government agency in Washington, D.C., completed the first comprehensive study on brain injuries ever done in this country. The report showed that nobody really had a program for people suffering severe, traumatic brain injuries and dysfunction related to the situation.

"The reason is once brain injury patients come home, insurance companies pay for their therapy for a little while until therapists tell them what will be done and what the results will be," Larry said. "Because therapists don't know, they set up a plan, patients don't meet the plan and insurance companies stop paying, claiming the therapy is only maintenance and won't make them better. This lets insurance companies disappear after three months of therapy. Either the family takes care of them or they go to a nursing home and there is no follow-up."

Until now.

Last year, the National Institute of Health began providing grants in an attempt to develop brain injury therapy programs.

The Dobsons went to the National Institute of Health and learned that they have 783,000 brain injury cases on computer but hadn't done much else with them.

Last summer, the Dobson family attended the International Brain Injury Conference in Turin, Italy. The trip shed light on rehabilitation that American doctors and therapists told the Dobsons was not possible.

"It was the first time we got a chance to all get away and relax together," Larry said. "The trip that was a good experience for all of us, one of the first things we realized was that nobody wanted to work with Emily's right arm, that it was hopeless. A lot of people don't realize how much ignorance there still is about brain injuries."

The number of brain injury patients is also little-known to most people. There are 90,000 people with brain injuries just in Minnesota, Larry said.

After talking with people from all over the world in Italy, the Dobsons learned that governments and insurance companies dictated brain injury rehabilitation programs.

Larry described what he thinks is one of the biggest misunderstandings on the subject.

"Many therapy people that worked with stroke patients think the same therapy works with brain injury patients," Larry said. "While there are some similarities, there are some differences."

The Dobsons learned that intensive therapy works the best with brain injury patients. They became interested in constrained limb therapy that the National Institute of Health began funding at a medical school in Birmingham, Ala. and the University of Pennsylvania.

Larry created a seven-hour per day, six days per week arm and hand stretching exercise program similar to the grant-funded models that showed success in recovering the paralyzed limb. He advertised for nurses to work with his daughter and found seven nurses and therapists to work with Emily for an hour apiece, from 9 a.m. to 4 p.m., each day.

The program is reaping rewards.

"Emily is doing more every day," Larry said. "We didn't expect to see results for three weeks. Instead, we saw them after the first day and see something new each day. Not only is she using her arm much more, but she has much more movement in it."

The exercises begin with sensory stimulation messages to stimulate feeling Dobson didn't have before below her elbow. She continues with range-of-motion and strength-building exercises.

Melanie Dobson said the program has also improved Emily's cognitive abilities and self-esteem.

"More of her personality is coming out," Melanie said.

"She sees the changes in her arm and is just ecstatic," Larry said. "Especially after being told by doctors that she could never move it. Emily is gaining more independence from this."

Some of Emily's therapists have noticed she is starting to move finger on her right hand for the first time since the accident.

Emily enjoys e-mailing messages to friends including others in a brain injury out-patient program at Mayo Clinic. She is partially blind and her speech remains slightly slurred.

She admitted her exercises are hard work but that they are fun and make her feel better.

"I work really hard," Emily said. "I can raise my right elbow now and hold a glass by myself."

"She's come a long way in two weeks," Sheila Nachreiner said. "She has gained lots of arm strength and movement."

Plans are for her to participate in the Courage Center program in Golden Valley this August. She will experience dorm living and work on getting ready for independent living.

Larry said the program is like any other exercise program. It has to continue or the benefits will be lost.

The Dobsons are videotaping the program and sharing it with the Mayo Clinic and other people with similar injuries.