ALS research shows link between disease and military veterans

10/30/15

By Blair Martin Gradel, Joint Base Pearl Harbor-Hickam Public Affairs

According to the Amyotrophic Lateral Sclerosis (ALS) Association, there is emerging research that now suggests a link between ALS and military service.

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

The findings came from two research studies at Harvard University School of Public Health published in 2013 that found military service members are 60 percent more likely of contracting ALS than those who did not serve in the military.

“An association between military service in general and development of ALS has been recognized for a long time,” said Army Maj. Charlotte Kastl, chief of neurology service at Tripler Army Medical Center.

“The reason for this is not clear. Some studies question whether environmental exposure to toxic or infectious agents is a trigger for ALS.”

“However, the bottom line is that we still don’t have a definitive answer as to what causes ALS,” she added. “More scientific research needs to be done in the military and non-military population.”

Fred Fisher serves as President and CEO of The ALS Foundation Golden West Chapter, responsible for serving those living with ALS in 31 counties of California and the state of Hawaii.

According to Fisher, one of the biggest challenges for diagnosing the disease is that many of its symptoms (such as slurred speech, shortness of breath and weakness in muscles) mimic those of other treatable illnesses.

“ALS is a disease where there is no blood test or no muscle biopsy or anything that can determine that a person has the disease or not,” Fisher explained. “So the process of diagnosis is quite lengthy and literally involves ruling out anything else it could be.”

Fisher said there are close to 2,000 veterans diagnosed with ALS currently living in the U.S. In his chapter alone, there are nearly 200 veterans living with the disability, with nine of them living in Hawaii.

When Jeff Conway, a Navy Reservist and a member of the Greater West Chapter, was diagnosed in March 2014 at age 44, he became the youngest diagnosed veteran with ALS living on Oahu.

“You kind of take your health for granted when you are in the military to a certain extent,” said the Ohio native. “When everything is good, you have the vanity of your youth because you are healthy and fit. You don’t think later in your 40s that this kind of thing can ever happen to you or your family.”

Conway, a former Navy pilot, said his symptoms began in 2011 when he experienced twitches in his muscles.

“From the time I started seeing my PCM [primary care manager] to the time I was given a formal diagnosis was close to three years,” he said. “It’s a real struggle to get the diagnosis since there is no test, but once you are in the VA system it’s a great place to be.”

In 2008, the Department of Veteran Affairs (VA) implemented regulations to establish a presumption of service connection for ALS. Under this regulation, veterans, upon diagnosis of ALS, immediately receive 100 percent disability and the most comprehensive medical package that the VA has ever issued.

After receiving his diagnosis, Conway now stresses the importance of learning how to navigate the complex processes for receiving benefits from the Department of Veterans Affairs.

“The important thing for veterans to know is to be proactive because by the time your condition deteriorates and you need something, like a power wheelchair, it’s too late to ask,” he explained.

“If I can give anyone any advice, it’s that no one is going to care more about your health than you, so how the [medical process] works and be prepared to ask all the right questions about how the process works and how it affects your taxes, social security and so on,” he added.

The ALS Association is included in the Combined Federal Campaign (CFC). Federal and state employees, as well as members of the military, can participate in the workplace by giving through this program. Donors can designate the ALS Association by writing 11997 on the workplace giving form.

(For more information on ALS and the ALS Association, visit als-hawaii.org).

 

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