Copyright 2005 Richmond Newspapers, Inc.
Richmond Times Dispatch (Virginia)
October 14, 2005 Friday
CITY EDITION
SECTION: AREA/STATE; Pg. A-1
LENGTH: 1023 words
BYLINE: By Penelope M. Carrington Times-Dispatch Staff Writer

Penny Keenan stepped into her Labrador retriever's pen, lost her balance and fell into a harsh new reality. It wasn't that she didn't have time to catch herself. It was that she couldn't.

Nor could she get up.

Fifteen minutes and a cell-phone call later, her husband, Les, came to her rescue. The fall was the first brutal blow in the relentless march of a disease that would soon freeze Penny in her own body.

"That was the wake-up call," Les said of Penny's fall in August 2003 at their Innsbrook home.

It happened a week after she was diagnosed at age 52 with amyotrophic lateral sclerosis, or Lou Gehrig's disease - news that brought tears, then resolve. They would retire early and savor their remaining time together, marking it by hours, by minutes.

Les and Penny, veterans of the construction industry, had been inseparable anyway, fishing, traveling and gardening before ALS butted in with a new prism through which to view their lives.

ALS is a progressive, fatal, degenerative disease that starves nerve cells in the brain and spinal cord. As the cells die, the brain's ability to command and control muscle movement fades away. The muscles weaken and shrink, sometimes leading, as with Penny, to paralysis.

"With every progression of the disease, you think, `How much worse can it get?' - knowing all the time what the answer is," Penny typed on the electronic device she operates with a wireless pointer built into a reflective, removable dot on her forehead.

"With each progression, you learn to adapt."

Now 54, Penny still cooks, only she does so on paper in "Cooking With Ginger: Ginger Gets Lost, Book 1," an illustrated children's book that follows the adventures of a Jack Russell terrier. Recipes of foods Ginger encounters along the way are interspersed throughout.

Penny wrote the book, in part, so her 2-year-old granddaughter, Sydney, wouldn't miss out on cooking with her grandmother. The self-published book ($12) is one of five she has written to benefit ALS research and the first to be released.

"We tried to look at the bright side," Penny said. "We had more time than someone that was in a car accident."

No one test can diagnose ALS, which strikes more than 5,600 people a year in the U.S. - 15 every day, according to the ALS Association. Most people live two to five years after diagnosis.

"Every day is a battle. Every day is a blessing," said Les, 55, who retired from Graybar Electric Co. after 30 years. "It's more of a battle now."

ALS affects each person differently. Penny was hit hard and fast. An animal lover, she can no longer rescue hurt animals in the road. She can no longer type 100 words a minute. She can't talk on the phone or eat solid food. She misses chocolate.

The inability to speak hurts the most. "There was always an enthusiasm in her tone, whether she was answering the phone or in person," Les said.

No imitation female voice could take the place of hers, so the couple picked the opposite, a male voice, for Penny's electronic communication device, which turns what she types into sound.

"I don't feel like myself. How could I?" Penny said. "I was a doer. I am not the wife Les knew. . . . However, I think the core Penny is still here but much more frustrated than she used to be."

In dreams, she is as she was before ALS. "I don't get upset when I wake," she said. "It was just nice to think of me as normal."

Back then, she happily spoiled Les - a fact that friends and family often ribbed him about. Penny said she did all the cooking, picked out his clothes every morning and kept the house running. She was no different at Johnson Controls, where she spent 30 years before retiring.

"She was kind of the mother hen," said Patty Averett, a longtime friend who worked with Penny for a decade. "Anybody new coming in, she would give them help and give them guidance."

Those who know Les and Penny admire their devotion. "We talk about it all the time how . . . you can tell how much they are in love - the way they look at each other or when Dad pats her knee and calls her `honey,' " said Rebecca Reid, Les' daughter from a previous marriage and mother of Sydney. "Every wedding I go to, I think of them and when [the couple] is taking their vows, I think, `Do you know what this really means?'"

Jonathan Keenan, Les' son and Rebecca's brother, said the fact that his grandmother suffered from Alzheimer's disease is even more reason for him to marvel at his father's loyalty.

"Dad also had to watch his mom die of a disease that took away her mind. Now he has to watch his wife die from a disease that's taking away her body," Jonathan Keenan said from his office in Northern Virginia. "I don't know how he does it."

Les and Penny celebrated their 21st anniversary last Friday. "I think we have endured the good, the bad and the ugly," she said. "I have always cherished my time with Les and still do. . . . We don't talk about what the end will be like. We just try to take every day as it comes."