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Lou Gehrig's Disease victim to keep swinging away
Carrie Fernald makes a pitch to educate patients and families.

By Sheila Hagar

When Carrie Fernald was first diagnosed with her illness, the College Place resident had barely heard of it and couldn't even pronounce the name, she recalled.


Edison Elementary School students fill the cafeteria for lunch, sitting beneath the same basketball hoops used when the room functions as a gym during other parts of the day. U-B photo by Matthew B. Zimmerman

Two years later, Fernald has become well versed in amyotrophic lateral sclerosis, commonly referred to as ALS or Lou Gehrig's disease.

Fernald and her daughter, Olivia, traveled to Japan in November to take part in an international ALS symposium. It was an important step in reaching Fernald's self-imposed mission to educate herself as much as possible so she can reach out to others, she said.

And a step to take while she still can.

Clad in red shirt, blue jeans and white sneakers, the 52-year-old looks healthy and strong as she perches on the sofa in the home she and her husband bought 30 years ago. Her laugh, infectious and frequent, carries through the rooms of the one-level house still swathed in Christmas decorations.

For Jeff and Carrie Fernald, life has usually gone steadily forward. She worked as a hair stylist in the Walla Walla area for three decades; he wrangled paperwork and insurance estimates for Northwest Collision.

Together they raised Olivia, 25, and Michael, 23; both attended Walla Walla High School and are making their way in the medical field.
By 2004, the couple was enjoying a reduction in education expenses and a corresponding increase in time and space to themselves.

But Carrie had been fighting some unexplained cramps in her left leg and foot since 2002, she remembered. Fernald complained to her friends and alerted her doctor, but "it was not that big of a deal."

The first time her foot wouldn't lift entirely as she stepped, she found the problem odd but not alarming, she said.

"I noticed my foot was slapping the sidewalk. I thought the strap on my Birkenstock needed adjusting," she said.

Looking back, however, "I think I knew before I knew."

What she couldn't really know then was that weakening leg muscles were beginning to atrophy. Those cramps were Fernald's first sign of ALS, one of the most common neuromuscular diseases with no respect of race, geography or ethnicity.

The disease received national attention when baseball legend Lou Gehrig, known as the "Iron Horse," was diagnosed with ALS in 1939. The illness forced him to leave his beloved game. He died two years later at age 37.

Nearly 70 years later, diagnosis for ALS usually does not come quickly. Early warning signs can match countless other health issues.

Routine lab tests showed nothing amiss, Fernald said. "Everything came back good, but that was bad. You want them to find something."

"Something curable" is the unspoken end to her sentence.

There is no cure yet - about 90 percent of ALS victims live two to five years after diagnosis.

If one gets lucky, staying off a ventilator and somehow dodging complications, "you can live a long time," Fernald said.

Eventually, the brain loses control of all voluntary movement. ALS begins by robbing strength in the limbs. Walking becomes difficult then impossible. The ability to button a shirt fades before the hands are useless. At some point, patients can no longer get out of bed by themselves.

As the illness progresses, talking and eating become hard. Sufferers are in danger of choking, no longer able to chew and swallow normally. Eventually speech is gone and the ability to protect the airway when swallowing is compromised. Patients often contract respiratory failure and die of it, not ALS.

Most victims retain the ability to hear, see, taste and smell. Their minds stay sharp, and they are aware of the loss of function as the disease progresses.

Fernald has needed walking assistance for about a year, she said, her eyes traveling to the walker nearby. Sporty in red, it has a basket for carrying and a seat for resting. On this day, it doubles as a coffee table with Fernald's ceramic mug.

Once accustomed to setting a brisk pace that elicited complaints from friends whenever they shopped with her, Fernald must now map every inch of a journey, she said. "Moving is no longer mindless."

A trip to refill that coffee cup will need time and dexterity to traverse the living room, pass through the family room and into the kitchen. "I have to plan out everything, even to get the phone."

She is grateful for her home's open floor plan, Fernald explained, because "I'll go to a wheelchair next."

There's a driving desire to get out of the house as much as she can while she can.

"I have a huge network of friends, Huge." It is good medicine to do things with those friends and family, Fernald feels. "Pretty soon, I won't have that option."

She refuses to relinquish the race against her personal clock before she must. Whatever time is left will be used for the way Fernald has tried to live the rest of her life - going forward.

For now, that means gathering and disseminating data about ALS. When she learned of the Japan conference, she knew she would need help and money to attend.

Daughter Olivia, a radiation therapist in San Jose, Calif., was willing to supply the former, but how could Fernald find the $5,000 for registration and airfare for two?

She was always one to give, to do for others, she said. "A one-man machine - go, do, coordinate." Being on the receiving end was not meant for the independent Fernald.

Others apparently didn't agree. Within 10 days, $10,000 had poured in. Family, friends and strangers put their money where their hearts demanded, allowing Fernald to send $5,000 to Virginia Mason Hospital and Medical Center in Seattle for research.

Expenses ate up about $3,500, she said. "The rest...well, the rest was gifted specifically to use as spending money," she recalled, her laugh still bearing traces of surprise. "So we shopped."

Not a lot, though. The three-day symposium was filled from morning to night with presentations by doctors - including the Seattle-based specialist who monitors Fernald - researchers and a sprinkling of patients and members of families.

She estimates there were 600 attendees representing 16 countries. To hear of new research, new hope, was good, she said.

"I learned that I'm so thankful to be living in America. There was a man from Mongolia there representing his family. He has a brother with ALS, and there is nothing there. Nothing."

Fernald's days of "go, do, coordinate" are not yet closed. She hopes to take what she learned and cram it into a PowerPoint presentation to take into her own community, she said. "And put together a newsletter, start one up."

Community awareness will not be a cure, but it can be a lifesaver for those going through it and a safety valve for families, Fernald said.

Despite natural optimism, she's no Pollyanna pushing a walker, she concedes. "It feels totally unfair, it does." The newly diagnosed feel like they have been handed a death sentence, as do their families.

"You wonder, `Will I ever see a grandchild? Will I see my kids married?"' Plans for the golden years are erased.

Fernald has not yet prepared for her death, she said. Initially after diagnosis, she threw herself into a whirlwind of making quilts for nieces and nephews and cleaning closets.

Since slowing down, she continues to cook and quilt, choosing to do what she can as long as she is able.

But Fernald hasn't recorded her voice for the day it falls silent, nor has she made videos for future grandchildren, things recommended ALS patients do.

She has a hard time accepting terms like "disabled" or "handicapped," she said. "The day I had to get a disabled parking permit, that was a very hard day. I was the one who hoofed it everywhere. My friends couldn't keep up."

Mostly, though, this disease has taught Fernald the cliche is true. "Life is a gift. It really is. Every day you're given."

Plus, some of what's been wrought has come in really handy, she noted wryly. "Now my friends like to take me shopping. I have the handicapped parking sticker."

And, once again, the sound of her laughter fills the house.

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