Going by the BOOK —

Unique organizer helps brain-injured people cope

Jenny Way came here to remember. The 21-year-old from Port Townsend, Wash., spent five days in a coma, and another two months at Harborview Hospital in Seattle, after getting high by inhaling fumes from a can of Scotch Guard furniture cleaner.

Her heart stopped for an estimated five minutes on Jan. 13, 1994, before paramedics revived her.

A punk rocker whose hair color changes monthly and whose ears are filled with silver pierced earrings, she realizes now that what she did was “a stupid thing.”

“The injury itself causes so much darkness,” Way says quietly.

But that realization isn’t going to reverse her severe brain damage, including short-term memory problems from a lack of oxygen to her brain before the paramedics revived her.

Ask her a question, and in the middle of her answer she will softly say, “I forgot the question.”

She cannot remember what happened a few hours ago, and sometimes a few minutes ago.

She came to Medford with her mother to learn how to remember what happened today, yesterday, and last week, by learning to use the Brain Book, a new, practical tool designed by a Medford woman and brain-injury survivor.

The Brain Book is catching on nationally with other brain-injured victims and the professionals who work with them.

The book looks like a day planner, but is much more. It gives people with brain injuries a place to write everything down and easily retrieve that information. It includes a daily schedule, a place to write completed activities, a plastic pouch for money, a key ring, special cards for writing down directions, tear-out sheets for errands and shopping lists and more.

“A lot of people rely on it because it gives them access to their life, to thoughts and plans, to dreams and goals, because you forget what your dreams and goals are, oddly enough,” says Kathy Moeller, a former marketing executive in New York who now works part-time in the Mail Tribune’s classified ad department and is the Brain Book’s creator.

“I actually call the Brain Book a cognitive wheelchair,” Moeller says. Moeller, whose car collided with a truck five years ago, was left with a fractured skull and femur. She went through a residential and outpatient rehabilitation program in California, but had trouble applying what she learned there to her everyday life and work.

She gradually developed her own brain book, as she tried to put the memory and cognitive skills she learned from speech and occupational therapists into daily practice.

“I’ve packaged any strategy any professional has every taught me, because it all breaks down in the process of trying to apply it,” she says.

Therapists taught her to write everything down on a piece of paper or in a memory book.

“I’d write all this stuff, but nobody told me how to retrieve it,” Moeller says.

Other brain-injury survivors using the book say they would write on yellow post-it notes, but wouldn’t be able to find the note they needed, or they’d put the piece of paper in their pocket or on their desk and forget where they put it.

They experience little or no shortterm memory. Many forget how to get to the corner store, what they wanted to buy, where they parked their car.

Their thoughts are scattered and unfocused. They are super-sensitive to light and sound, easily distracted, overwhelmed by small amounts of information and easily confused and disoriented about time and space.

One night in Port Townsend, Way’s parents spent three hours looking for her downtown. When a police officer found her, Way thought she had been gone for 15 minutes. Moeller’s Brain Book works because it has a place for most of the detailed information brain-injury survivors need.

Unlike a daily planner, she has sections that address the simple tasks of daily life, often difficult for people with brain injuries to remember.

For example, Way used to have a hard time talking to the friends she met after her injury, because she didn’t remember them or what she wanted to say.

Now, in her Brain Book, she is learning to turn to the “Talk To” section when she thinks of a thought she wants to tell a friend. She writes the person’s name at the top of the page and what she wants to tell him or her. When she is on the phone or sees a friend she turns to the “Talk To” page and can read back her own thoughts.

There is even a section that helps victims control their emotions, an act many find difficult.

After the red “UPSET” tab are pages labeled, “Feeling Fatigued,” or “Feeling Angry.” Here is where people list actions to take when they feel out of control. Moeller says some people write down a note to call a friend, take a break or read the serenity prayer as ways to calm themselves.

In January 1995, Moeller and Bev Naylor, a former teacher of special-needs children, formed Recognition Inc., an Ashland educational services company that provides training on how to use the Brain Book, job coaching, and training for teachers, skills trainers and health-care professionals on how to teach the Brain Book.

Naylor and many speech therapists agree that brain-injury victims learn best from continual practice and repetition.

So they train clients to reach for the Brain Book when the phone rings, and to automatically say, “Let me look at my book,” when someone asks what they did yesterday.

The system also comes with tape cassettes that help clients plan their day in the morning, review their Brain Book in the evening and prepare for the next day.

Way has been training with Moeller and Naylor for the past three weeks and plans to continue training for another month or more.

Way has used rehab services, but her parents couldn’t find a program that would help her learn how to live independently and teach her to progress, her mother says.

They discovered the Brain Book at a conference in Washington sponsored by the Washington Brain-Injury Association last fall. Way took to it at once. They made another visit to Medford for a few days’ training and then decided to come for intensive training.

Way’s mother says when her daughter started using the Brain Book, “there was a major change in Jenny’s attitude, in her sense of hope and her notion of getting better.”

Without her Brain Book, Way says, “I wouldn’t know how I would feel,” because it’s the thoughts and sentences she writes down in her daily log that trigger her to remember how she felt and where she went and what she did.

She would have no ability otherwise to retrieve that information for herself.

“I call it (the book) my brain,” Way says.

Because of her Brain Book, she says, “I know that the injury will be something I’ll always have, but now I feel I can overcome the difficulties.”