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Wife organizes walk to fight ALS
By Jayna Boyle (Contact)
Thursday, October 23, 2008


Sometimes theatrical groups perform for Dr. Preston Darby in his home. Other times, old friends stop by with a book they recently wrote and want reviewed.

It's these visits from family and friends that keep him going when so much has been taken away.

Darby was diagnosed in 2004 with amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease. ALS is a neuromuscular disease that prevents neuron impulses from reaching muscles to allow for movement.

People with ALS lose use of all their voluntary muscles, including the diaphragm, which controls breathing, said Patrick Callihan, executive director of the ALS Association South Texas Chapter. Lack of use causes the muscles to atrophy. For many, the disease progresses until they suffocate and die.

The disease is a frustrating mystery.

"There's no cause, no cure and no treatment," Callihan said.

Darby's wife and caregiver, Pam Darby, is dedicating her time to raising awareness about ALS. In addition to helping organize a local ALS support group, she has put together a three-mile Walk/Run to Defeat ALS that will begin Saturday morning at the West Texas Rehabilitation Center.

"I'm going to do this every year," Pam Darby said. "It's a huge effort, but I feel very passionate about this."

Coordinators are hoping 250 to 300 people will turn out for the walk and run, which will circle the Angelo State University campus three times.

Funds raised from the walk and run will benefit the ALS Association South Texas Chapter. Callihan said the association helps ALS patients by promoting research and assisting with equipment loans, caregiver relief and grief coping courses.

The government and veterans affairs hospitals recently identified ALS as a military-related disease, Callihan said. War veterans are twice as likely to develop ALS than others.

The occurrence of ALS is typically five to six people per 100,000, Callihan said, although about 20 in the San Angelo area have been identified with ALS. While it appears San Angelo may be a hot spot for ALS, he said, it may be partly because of a high number of military retirees in the city.

The disease can strike anyone at any age, Callihan said - the youngest person he has seen with ALS was 17.

Most die within two to five years of diagnosis.

Preston Darby, 78, was an Air Force flight surgeon from 1955-64. He has lost use of his arms and legs and has a feeding tube peg in his stomach for eating. For about a year, he has been breathing with the assistance of a ventilator.

These days, Preston Darby, who is known as Pres to his friends, leaves the house only once every three months for ALS clinic visits to San Antonio. His wife uses a sling to help maneuver him around the bedroom and bathroom.

"I've always been an independent person," Preston Darby said, "and now I'm totally dependent, and it bothers me."

Among the hardest things for Preston Darby to give up were his regular trips to a local health club. He said he thinks his level of physical fitness kept the disease from being more rampant.

"I went from a fitness nut to totally dependent in two years," Preston Darby said.

Pam Darby, an advance practice nurse, takes care of her husband full-time. She is able to continue teaching in the Angelo State University nursing program through Web-based courses.

"I'd rather have him like this than not have my husband at all," she said.

Her next goal is to create a traveling ALS clinic in San Angelo so that local ALS patients won't have to travel to San Antonio.

It is difficult to move ALS patients, and traveling is an ordeal, she said.

"The clinic could integrate stroke and paralysis patients, too," said Pam Darby, who wears an ALS bracelet that says "Never give up."

The help from the ALS support group is indescribable, Pam Darby said, although mostly just caregivers attend the monthly meetings because it is so difficult to move ALS patients. She said she corresponds daily by e-mail with another caregivers in the city.

Preston Darby practiced as an internist for 50 years, so he knew from his medical experience that an ALS diagnosis didn't leave much hope.

"A lot of it is how hard you're willing to fight," Preston Darby said, "especially for a physician, because I know that there's no new drug or anything to save us."

He sets small goals for himself for how long he wants to last. His visitors, and even the occasional call or note from an acquaintance, are a major part of his therapy.

"They have restored my faith in humanity, not that I ever lost it," Preston Darby said, "but this can really get you down at times."

If you go

What: Three-mile Walk/Run to Defeat ALS.
When: Registration begins at 10 a.m. Saturday; opening ceremonies are at 11 a.m.
Where: West Texas Rehabilitation Center, 3001 S. Jackson St.
Cost: Free, or by donation or pledges.
What else: Visit alsasotx.org.