|Army Ranger veteran Beau MacVane, battling ALS, works out daily on his trike, and with special lines constructed in his back yard.
Statistics confirm that ALS strikes U.S. military veterans more frequently than it does the general population. One study conducted in 2005 found that veterans, regardless of when they served, are 60 percent more likely to contract ALS than people who were not in the military.
Even among vets, however, some groups are more prone to get the disease than others. In particular, those who served in the first Gulf War, August 1990 to February 1991, are nearly twice as apt to contract ALS as veterans of other conflicts.
Why? Nerve gas or other weapons-related toxins? Combinations of chemicals in the bloodstream from all the inoculations troops received?
Unfortunately, as with ALS in all of its contexts, there are no clear-cut answers. Yet.
Nerve gas, pesticides and enzymes
Returning from the Gulf War, some veterans complained of assorted ills that included loss of coordination, numbness in the extremities, constant pain and impaired thinking.
The Department of Veterans Affairs under the Clinton administration dismissed those complaints as the result of stress (neurotic vs. neurologic).
But in 1997, physician-epidemiologist (and specialist in Gulf War syndromes) Robert Haley and researchers at the University of Texas Southwestern Medical Center in Dallas found that several influences were associated with neurologic symptoms similar to those reported earlier by veterans.
Haley categorized those symptoms as lack of coordination, joint, muscle or nerve abnormalities and impaired thinking.
The influences associated with the symptoms included nerve gas, the medication given to counteract the effects of the gas, and several types of pesticides, including the one used in flea collars (which some soldiers wore to kill sand fleas).
In 1999, Haley and researchers at the University of Michigan published findings that linked “Gulf War syndromes” to sluggish activity of an enzyme called PON1. This enzyme helps detoxify nerve gas, anti-nerve gas medication, pesticides and insect repellents.
Researchers drew blood from 26 veterans affected by Gulf War syndrome and 20 who were unaffected. The affected group also reported exposure to nerve gas and/or pesticides, and severe negative reactions to anti-nerve gas medication.
The findings: Blood from affected vets showed low PON1 activity and the substitution of one amino acid molecule (arginine) for another (glutamine) in the enzyme — both associated with the development of abnormal neurologic symptoms.
In some cases, years later, vets who had manifested these symptoms developed ALS.
Haley theorizes that if researchers can increase the level of PON1 activity in humans (they’ve done so already in rats), they may be able to mitigate or negate the effects of some substances like nerve gas.
In the interim, thousands who fought one war only to face another when they returned home, are anxiously waiting.
A tale of two vets
Bob Bischoff and Beau MacVane are worlds apart in age and distance. Their common characteristics are that they’re both military veterans and have ALS. Yet their years in the military reflect markedly different experiences and exposure to influences that may or may not have contributed.
MacVane has had ALS for slightly more than a year, Bischoff for eight years.
Once a 10 handicapper
Bischoff is 73. He served in the military from 1954 to 1956 as a radar technician, just as the Korean War was winding down, and then as an electronics technician for eight years after his discharge. For another 15 years, he worked as a land surveyor at an oil refinery near his present home in El Dorado, Kan.
The exposure to electronic fields and petroleum refining are the only things he thinks could even remotely be connected to his ALS, and even so, he didn’t begin experiencing symptoms of the disease until 2000.
At the start of that year he was a serious and proficient golfer. In 2001 he played his last game. “I fell down every time I swung the club,” he said. “I just couldn’t do it anymore.”
Now Bischoff requires a caregiver 24/7 and uses a power wheelchair with sip-and-puff controls. He cruises the Internet and exchanges e-mails with the aid of a silver sequin affixed to the middle of his forehead. By reflecting light off the sequin onto a special keyboard mounted atop his computer monitor, he can “type” characters and activate command keys.
A Wichita television station devoted an hour to the subject of vets with ALS, and Bischoff was interviewed extensively. The American Legion post in El Dorado honored him recently for his years of supporting the group’s golf, bingo and finance committees.
Bischoff feels very strongly that getting the word out about ALS and its toll on vets will focus public attention on the issue and finally help identify causes and treatments.
Always a hard charger
Beau MacVane played five years of college football and then served five tours of combat duty in Afghanistan and Iraq from 2002 to 2006.
An Army Ranger (specialized airborne infantry) with a chest full of campaign ribbons and unit citations, he saw action in some of the hottest war zones.
His first intimation that something might be wrong occurred while he was still in the service and began experiencing hoarseness in his throat. Discharged in 2006, he received his ALS diagnosis in April 2007. Now 31, he lives with his parents in Boca Raton, Fla. His mother, Sandi, calls his present battle “the war after the war.”
MacVane can’t think of any particular influences in the military that connect to ALS, although he says the Veterans Administration has told him it’s due to some type of toxin. He recalls walking through areas where Iraqi munitions and shell fragments were scattered, and wonders about the shots he and other troops received to counter the effects of nerve gas.
Otherwise, he says, “We were just ordinary people doing extraordinary jobs — jobs that had more peculiarities than civilians are exposed to.”
MacVane can walk carefully with the aid of a staff. He walks and works out daily on a recumbent bicycle. He has an athlete’s physique and a steely spirit.
“We’re all just staying the course until a cure can be found,” his mom says. “Beau makes projects happen in order to keep busy [he just completed building a 240-gallon aquarium], but his mind is totally focused on beating this thing.”