'Louise the Disease' ABOUT THE DISEASE Stafford County runner will compete in her last marathon as Lou Gehrig's disease takes toll on her body



Debbie McGee (left) crosses the Chatham Bridge with training partners Lynne Millholland (center) and Nell Carrion. McGee, 52, will compete in her 26th and final marathon next Sunday in New York. She has ALS, which she has nicknamed 'Louise the Disease.'



Debbie McGee jokes with fellow runners after a 12-mile training run. ALS eventually will rob her of the ability to run, or even walk. So far, the strength in her hands has deteriorated to the point that she can no longer open a water bottle.



Date published: 10/26/2008





BY CATHY DYSON



Debbie McGee will need every bit of strength she's gained as a runner to get her through the challenges ahead.

Next Sunday, the Stafford County woman will race in the grueling New York City Marathon.

She'll face an even greater test from her own body.

The 52-year-old has Lou Gehrig's disease, a condition that eventually will destroy her ability to walk and talk, eat and breathe.

McGee's hands have gotten so weak since her diagnosis last year that she can't open a water bottle.

But she'll press ahead with the marathon because racing has given her so much and she wants to go out in style.

"Running changed everything about me: how I think about things, how I deal with problems, how I deal with joy," she said. "I think it changed me as a human being."

Next week's marathon will be her 26th in seven years--and her last. She won't compete anymore because she realizes, when the stopwatch is ticking, how heavy her legs feel and how labored her breathing has become.

But she'll still run, even though her gym bag sometimes is too heavy to carry.

"I don't look forward to the day when I can't run, but I won't stop until I'm forced to," she said.

McGee doesn't want sympathy. Instead, she apologizes for putting friends through the pain of watching her decline, said Birdie Clark, a fellow marathoner from Spotsylvania County.

"I have never once heard her say she's sorry for herself," Clark said.

McGee agreed to share her story--and to be interviewed by NBC on race day--because she wants others to know about the disease.

It's as much a death sentence as it was in 1941, when New York Yankees legend Gehrig died from ALS, or amyotrophic lateral sclerosis.

The condition attacks the nerve cells that control movement, and there's still no cure or known cause.

Doctors say that by the time the twitching starts--McGee has spasms all over--half the motor neurons have died.

McGee, who is married with three daughters, believes she's had the disease for almost two years.

Doctors say she's doing well and progressing slowly. Some who got the diagnosis when she did already are on feeding tubes or in wheelchairs, she said.

McGee works as an office manager in Northern Virginia and has lost other skills besides being able to open a bottle. But she has also come up with ways to cope, including a sense of humor that borders on stand-up comic quality, said Ellen Cochrane, patient services coordinator of the ALS Association chapter that includes Fredericksburg.

"She has this huge spirit that not only keeps her going, but keeps those around her going," Cochrane said. "She's an amazing woman."

When someone asks McGee how she feels, she responds: "I'm fantastic. If it wasn't for the ALS, I'd be in almost perfect condition."

She calls her ailment "Louise the Disease," while her running partner, Lynn Millholland of Spotsylvania, uses harsher words.

She refers to it as "that b---- Louise."

When McGee's hands became so weak she couldn't pull up a zipper, she bought clothes with elastic waistbands.

She no longer can hold a hair dryer above her head, so she hangs it on a hook over the door--and maneuvers the door to aim the nozzle.

The device she assembled for her car's ignition is even niftier. She covered two skinny wrenches with foam and mounted her key between them. To start the car, she inserts the key and pulls down the device.

The inventions make McGee feel that she has some control over her life, but she's not sure how she'll fare in the marathon. In the past, she did the 26.2 miles in 4 hours; she hopes to run through New York's five boroughs in six hours.

Her friends want to stay with her, but McGee prefers to be alone so she can focus on her race and not worry that she's holding someone back.

She knows that running a marathon may not be the best idea for an ALS patient. Doctors have told her that any muscle that breaks down will not recover.

But there are also those who believe that resistance exercise may be helpful--or at least not harmful.

"In truth, we really don't know," said Cochrane of the ALS support group.

Patients have to balance their quality of life against the energy they'll expend and how long it will take them to recover, Cochrane added.

McGee is determined to finish, even if she's the "bless-her-heart" person--the one other runners see trudging along hours after they've knocked back a few beers.

She swears to her friends that she won't run up any hills, and she'll walk when she feels tired.

"I'm doing this as a tribute to other ALS patients who can't run a marathon," she said. "I'm willing to risk some further deterioration to achieve this last goal."

And to show "Louise the Disease" who's in charge.

Cathy Dyson: 540/374-5425
Email: cdyson@freelancestar.com

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