Someone Special

by David Johnson, Lewiston Morning Tribune
Friday, January 9, 2009

People featured in this column have been selected randomly from the telephone book.

MOSCOW - Bonnie Brainard speaks in quiet tones, has great difficulty smiling and describes her predicament as the antithesis of the Tin Man's plight.

"I really can't compare it to anything except the Tin Man in the Wizard of Oz. When he was frozen, he got oil and was so relieved that he could move. When I take my medicine, I'm taking it so I won't move."

Bonnie has Parkinson's disease. She is one of millions who suffer from the degenerative disorder of the central nervous system most often associated with involuntary movements. And like many with the affliction, Bonnie says, she went through years of secrecy, denial and finally an awakening.

"I didn't want anybody to know. It's just something you think might go away. So you're in denial." She told only her husband, Mark Brainard.

"I didn't want to tell my daughter because she was going off to college. I wanted to protect her. I didn't want to hurt anybody."

Today, at 61, Bonnie looks back at her 12-year struggle with the disease and says she's learned from past mistakes. Enough to reach out to other Parkinson's sufferers in hope of lending an unsteady, but helping hand.

"I used to do calligraphy," she says while scribbling with a pencil on a piece of paper and explaining she needs to stay busy, lest the uncontrollable movements take over. "Now my handwriting is not legible." She turns the paper around to show a sketchy rendition of the word "handwriting."

She all but whispers, "and my voice is fading." Then Bonnie, as if finishing a cathartic exercise, addresses the future. "I take lots of medication and the doctor is recommending DBS surgery, deep brain stimulation."

To talk publicly for the first time about a disease that consumes her days, Bonnie says, is a bit like turning the corner and realizing she can dismiss concerns about a distant destination in favor of really enjoying the rest of an uncharted trip.

"There's one blessing. I have learned to live life to the fullest."

That, Bonnie says, is her message to other Parkinson's patients. And her hope is to bring as many of them together as possible to create a shared future. "I want to somehow get a group together where we could sing and dance. I want to get something started."

Intentional movements (like dancing), exercise, discourse and socialization, Bonnie reasons, amount to valuable treatments beyond what medication can do for the disease. "I, personally, would like to be a sounding board for people dealing with Parkinson's disease," she says, confiding such a wish, if nothing else, is proof positive the past is finally behind her.

"I hope it (her story) penetrates or affects somebody."

Her first symptom, Bonnie says, came more than a decade ago while she was attending a jazzercise class. "My foot wouldn't do the routine." She went to a neurologist who, she says, misdiagnosed a stroke. But a second neurologist declared the onset of Parkinson's was at hand. After telling her husband, Bonnie says she began taking medication and doing her best to keep the secret.

"I worked at the University (of Idaho) in facilities planning as an interior designer, and I worked for the bookstore for 10 years as a book buyer and seller."

But eventually, Bonnie explains, she could no longer rely on the medication to mask the involuntary movements caused by the disease. "I didn't know when the meds would shut off."

With reality tightening its grip, she applied for disability, retired and has since dealt as best she can with each new day. "I've fallen many, many, many times," she says, rolling up a sleeve to display the latest set of bruises.

A 1965 graduate of Moscow High School, Bonnie holds a bachelor's degree from UI in interior design. In addition to forming a Parkinson's group, she hopes to channel her artistic skills, and those of others, into a means of raising money for the National Parkinson Foundation. "I would like to someday open a gallery. My drawing is getting kind of sloppy, so I've picked up photography."

In addition to living life to its fullest, Bonnie says she's also learned no matter how bleak her situation gets, there's always someone else dealing with worse circumstances. Empathy for others, she suggests, can be a soothing salve for your own difficulties.

"Be kinder than necessary," she says, "because everyone is fighting a battle of some sort."