View Full Version : All her patients die of ALS, but she carries on with hope

05-30-2007, 06:35 AM
Dave Darnell/The Commercial Appeal

Linda Gilbert is patient services coordinator for the Tennessee Chapter of the ALS (Amyotrophic Lateral Sclerosis) Association.

By Morgan Bernal
Special to The Commercial Appeal
May 30, 2007

Linda Gilbert has a thought for the day as she goes to work.
"You have to go in and believe that there is hope for today," she said, describing her job as patient services coordinator for the Amyotrophic Lateral Sclerosis Association (ALS).

After 2 1/2 years with the Tennessee chapter, Gilbert has not lost hope, but continues to gain strength in helping patients and their families cope with ALS, often referred to as Lou Gehrig's Disease.
"ALS is a forgotten disease because it only affects adults. It does not pull at the heartstrings like leukemia or breast cancer," Gilbert said.

There are more than 30,000 Americans living with ALS, and Gilbert has dedicated her career to working with individuals and families affected by this devastating illness. ALS is a neurodegenerative disease that leads to a rapid paralysis of the muscles and, inevitably, death.

Since there is no treatment, people like Gilbert work with patients, their families and primary caretakers to improve quality of life, ease symptoms and provide emotional support.

"I act as a liaison, case worker, and friend," Gilbert said. "I am not a nurse, but I recommend doctors, refer patients out and work with the caregivers to alleviate symptoms like muscle pain and depression."

Through phone calls, e-mails and frequent visits, Gilbert is able to "get a feel of the patient's overall condition" and assess whether they have "the proper care they need." However, as the disease progresses and patients lose their ability to speak, Gilbert's primary responsibility is to offer support to the caregiver, as they are "the major role players in the battle with ALS."

Gilbert has 52 patients spread over West Tennessee, West Memphis and North Mississippi.

How does she stay positive, knowing that every patient will die?

"I don't feel bitter. Death will take every one of us -- it is just how differently it takes us," she said, never losing her smile. "It is my Christian belief that helps me combat the gloom I bring home with me."

Perhaps her greatest emotional challenge was the death of her father 21 years ago; he died from ALS when there was still very little known about the disease, or how to ease its symptoms.

"They only recently began a national database for ALS patients, and the ALS Association has been around less than 20 years," Gilbert said.

After years spent working in public and private education, Gilbert divides her time between her family, her church and her job. With a family of five, 52 patients and dozens of former caregivers she calls her "biggest fans," Gilbert stays busy.

"I love people -- that's what I thrive on," she said. "I get energized from people, and that keeps me from losing hope."

Linda Gilbert

Position: Patient services coordinator, ALS Association

Hometown: Memphis

Education: White Station High School; BA in deaf education, University of Tennessee

Community Involvement: Central Church of Collierville, Tennessee Chapter of the ALS Association