DoD provides resources, support for Gulf War families with ALS

Following the Gulf War, some veterans returned home complaining of muscle weakness and fatigue, among other physical ailments. Several were later diagnosed with the fatal neurodegenerative disease called amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. Because of the similarity of early physical symptoms with those other Gulf War veterans experienced, those veterans with ALS have raised concerns whether or not their disease was caused by their service in the Gulf War.

ALS is a chronic, progressive disease marked by gradual degradation of the nerve cells in the central nervous system that control voluntary muscle movement. This disorder causes muscle weakness and atrophy; symptoms commonly appear in middle to late adulthood, with death in two to five years.

The disease is hard to diagnose in its early stages, says Michael E. Kilpatrick, M.D., deputy director of medical outreach and issues in the Office of the Special Assistant for Gulf War Illnesses.

"There's no specific test to say, 'This is ALS.' The diagnosis is made by the advanced progression of symptoms over time," said Kilpatrick.

The impact of ALS on family members and their friends can be devastating. Kilpatrick and other team members from the special assistant's office have worked with a number of ALS families first hand to help facilitate care or provide them with the resources they need. Although the special assistant's office is not directly involved in providing health care, conducting research or determining what illnesses should be considered service-connected, circumstances often arise where the organization's involvement and intervention have made a substantial difference in the lives of veterans and their families who live with ALS.

"Sometimes just listening to them and providing them with a resource where they can turn for assistance is all we can do," said Kilpatrick.

Kilpatrick has contacted civilian physicians who are experts at treating ALS to discuss the prevalence and rate of this disease in the relatively young population of the military. Although these doctors rarely see anyone with ALS under the age of 40 in their own practices, they recognized the need for epidemiologic studies of ALS for answers.

Kilpatrick learned from the ALS Association of America that the number of new cases is one to two per 100,000 people per year. The data are not adequate to determine age related rates. The earliest known age for ALS onset has been 19, and the oldest has been in the 90s. Kilpatrick reviewed DoD's Physical Evaluation Board records from 1990 to 1998 and found 66 active duty servicemembers were identified with ALS. Of these, 16 had been in the Gulf War and 50 had not. There is a study under way to determine if there is a higher number than usual among Gulf War veterans.

During a town hall meeting in North Carolina., Kilpatrick and other OSAGWI team members met with a wife of a Gulf War veteran with ALS. She described a problem they had getting VA funding for in-home nursing help. She said that she could not leave her home long enough to go to the grocery store because there was no one to take care of her husband.

After this meeting, Kilpatrick and OSAGWI team members met with the VA to discuss the rapid progression of this disease and to determine if there was a way to quickly determine 100 percent disability for ALS victims.

Last year, the Benefits Working Group of the Persian Gulf War Veteran's Coordinating Board recommended to Undersecretary of Defense for Personnel and Readiness that procedures for evaluating and rating servicemembers who have been placed on the Defense Department's Temporary Disability Retired List because of ALS be reviewed. The Working Group requested that DoD shorten the 18-month interval between periodic physical evaluations for these patients due to the rapid progressive nature of the disease. When a disability rating of 100 percent is warranted, these veterans should be placed on the Permanent Disability Retired List in order to expedite their access to VA benefits and services, including funds for in-house nursing care.

However, Kilpatrick stresses that the laws which govern the VA's determination of service connection require the symptoms of ALS be documented during active duty or within one year of leaving the service for the disease to be considered service connected.

"The VA can determine any disease is service-connected if it occurs during the time the individual is on active duty. If they develop diabetes or they develop arthritis or have a heart attack we may not know why those things occurred, but they're service-connected. Understandably, there's a lot of frustration if those diseases occur after they leave the service and they are not considered service connected, but that's the way the rules are written today by Congress," said Kilpatrick.

One element which medical science has not communicated well, Kilpatrick said, is the limit of its own ability to yield medical answers. Gulf War veterans and the general public both have a perception that science has the answers to why people get diseases.

"For infectious diseases, we can identify an organism as a bacterium or a parasite or a virus, and say when you catch that, it causes you to become ill," continued Kilpatrick. "And if we can treat you with antibiotics for bacteria, then we can cure you." However, he said, medical science has not done a good job of communicating to the public about diseases like asthma, sarcoidosis, ALS or lupus where scientists can talk about what is happening in the body but they do not know what is causing the changes in the body to occur.

"Medical science doesn't have all the answers, and we've not explained that well. And so when people experience a significant event - such as the Gulf War - and they then subsequently have medical conditions that are of unknown cause, the normal human reaction is to say, 'It must be due to that event in my life.' If medical science doesn't know the cause of a disease or symptom, doctors cannot say absolutely it isn't due to that exposure, but they cannot say that it is, either. When medical science can't give an answer, people become frustrated," he said.

Kilpatrick concluded that for the veterans who are seeking answers about their own medical concerns, they must be their own healthcare advocates and keep asking for answers. Fortunately, for ALS victims and their families one of the best resources for support is the ALS Association.

Additional information is available from ALS Association's Information and Referral Service toll-free at (800) 782-4747. Veterans with questions about general
VA services for Gulf War veterans may contact the VA's Gulf War Helpline at
(800) 749-8387.