My Military Social Network

Model Care for Veterans with ALS

By Nanette Lavoie-Vaughan

Amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease, is a progressive neurological disorder that affects nerve cells in the brain and spinal cord. As the motor neurons degenerate, they no longer can send pulses to the muscle fibers, resulting in muscle weakness. Arms and legs, speech, swallowing, and breathing most commonly are affected.

ALS afflicts an estimated 30,000 Americans, most of whom are white males over the age of 40. Half of those afflicted live at least three years after diagnosis. Twenty percent live five or more years, and up to 10 percent live more than 10 years.

Hot topic

In recent months, ALS has become an issue of special concern for DoD and the VA because of an Institute of Medicine report that supports a frightening link between military service and the later development of ALS. How strong a link? Studies have found veterans deployed in the first Gulf War are twice as likely as the civilian population to develop the usually fatal condition.

The ALS Association has worked with Congress and the VA to increase funding for ALS research, including looking into why veterans appear to be at greater risk for developing the disease. When the first studies were published that found a link between ALS and service in the Gulf War, the ALS Association strongly supported former Secretary of the VA Anthony Principi’s policy of providing aid to Gulf War veterans with ALS. Under the policy, the disease is considered a service-related condition for veterans who served in the Gulf War between Aug. 2, 1990, and July 31, 1991.

Other veterans diagnosed with ALS, however, currently are left in the cold, despite research that has demonstrated elevated levels of the disease in all veterans, regardless of which war they served in.

“The Institute of Medicine’s conclusion helps to validate what the ALS community knows all too well — that if you served in the military, you are more likely to die from ALS,” says Steve Gibson, vice president of Government Relations and Public Affairs for the ALS Association. “We strongly support calls for expanding ALS research at both the Department of Veterans Affairs and the Department of Defense.”

DoD has listened. It recently funded a currently ongoing study at Duke University’s Human Center for Genetics in Durham, N.C., that is looking at possible gene-environment interaction in the veteran population that could explain the mysterious increase in incidence. However, it likely will take years before the study’s findings are published.

Dramatic improvement

In the meantime, a growing number of ALS patients are finding a notable improvement in their quality of life via participation in an ALS management program at the Duke University Health Center Neurology Clinic, also in Durham. The facility opened in 2001 and now has three satellite branches in the state. More than 300 ALS patients from throughout the eastern U.S. are enrolled in the program, which sees an average of three new patients a week. Twenty percent of the program’s patients are veterans.

The clinic’s multidisciplinary approach uses a team of health care professionals, including a physician, a nurse practitioner, a physical therapist, an occupational therapist, a speech therapist, a nutritionist, a social worker, a respiratory therapist, an assistive technologist, a nurse psychologist, and a representative from the ALS Association.

During a typical visit, which can last four to five hours, a patient sees each team member for a thorough evaluation of the effects of ALS. The team members address issues and specific problems, determine the need for specialty equipment, and educate the patient and his or her caregiver about the disease and the team’s recommendations. Referrals are made for supplies, additional support services, and treatment in the patient’s home.

“We develop close relationships with our patients,” says Social Worker Stacey Asnani, the clinic coordinator. “We are like one big family here.”

The results of the program can be dramatic. “What we didn’t know when we started nine years ago is people who come to a comprehensive clinic like this one live longer,” says Dr. Rick Bedlack, director of the clinic. “They live up to nine months longer and have a better quality of life throughout their whole disease.”

Support system

Indeed, the program has proved to be a godsend for all who are enrolled, as well as their caregivers.

“The staff is consistently informing us, teaching [us], and encouraging us,” says Dugan P. Smith, a former Army specialist from Durham who has been coming to the clinic since August 2007. “From the moment I was diagnosed, I knew I was not alone; I was part of a team.”

“The sense of support I have received from the staff is phenomenal,” says Steven White, an Air Force master sergeant from nearby Raleigh, who has been coming to the clinic since 2003. “We are welcomed with open arms and a smile by people who have made it their life’s work to find the cure, and until then, how to live with ALS, as opposed to dying from it.”

A unique feature of the Duke Neurology clinic is its relationship with the nearby Durham VA Medical Center. Veterans are able to receive all of their necessary medical equipment such as specialty wheelchairs, walkers, limb supports, and computers on-site.

The Duke Neurology Clinic also is involved deeply in ALS research. A study launched this summer will evaluate a brain-computer interface device for veterans with ALS who are unable to move or communicate. The device consists of a cap with electrodes that connect to a laptop. Users are taught to communicate by spelling in their mind the words they want to speak. The cap’s electrodes sense the resulting brain waves and send the data to the computer, which spells and speaks the words.

ALS still is an incurable disease, and for now, the focus remains on improving quality of life for those afflicted. For most, the team approach established at the Duke Neurology Clinic appears to be the way to go.

“In 100 years of research,” says Bedlack, “We have never come close with any drug to doing what we have been able to do with this multidisciplinary model when it comes to prolonging a life and improving quality of life.”

The American Association of Neurology appears to agree: It recently changed its treatment guidelines for ALS to advocate the use of a multidisciplinary team approach.

Copyright Nanette Lavoie-Vaughan and Military Officers Association of America. All rights reserved.