Gulf War Vets More Likely to Get ALS

by Margaret Wahl

A government-supported research team announced in the Sept. 23 issue of the journal Neurology that having served in southwest Asia during the Gulf War significantly increases the risk of later developing ALS.

Veterans of the Gulf War were found to be about twice as likely to develop ALS as were military personnel who didn’t go to the gulf during the same period. (This finding was released as a preliminary announcement late in 2001. The results are now fully analyzed and "official.")

Among the study’s authors were Hiroshi Mitsumoto, director of the Eleanor and Lou Gehrig MDA/ALS Research Center in New York, and Yadollah Harati, a neuromuscular disease specialist at the Vicki Appel Neuromuscular Clinic at Baylor College of Medicine in Houston. MDA also helped to identify people who served in the Persian Gulf War and later developed ALS.

Air Force Risk Slightly Higher

The investigators compared U.S. military personnel who were deployed to southwest Asia (Saudi Arabia, Kuwait and the other Arab emirates, Turkey, the Indian Ocean island Diego Garcia, or on the Red Sea) for at least one month between Aug. 2, 1990, and July 31, 1991, with military personnel not deployed to this area during the same period, when the Gulf War was fought.

Among the 1.8 million troops not sent to southwest Asia during the targeted period, there were 67 cases of ALS. Among the 700,000 sent to southwest Asia, there were 40 subsequent cases of ALS.

Although the overall number of ALS cases was small in both groups, the researchers determined that the risk of developing ALS for personnel deployed to southwest Asia was, for all service branches, almost twice (1.92 times) that of the risk for the nondeployed personnel.

The risk of developing postwar ALS was highest in those who served in the Air Force (2.68 times the risk for nondeployed personnel) and the Army (2.04 times). Elevated risks found for deployed Navy, Marine Corps, and Reserves/National Guard personnel didn’t reach statistical significance, the investigators say.

Environmental Factors Involved

The study authors note that clues to possible risk factors that may account for the greater than expected number of ALS cases may come from analyzing interviews of the veterans and comparing interview data with possible environmental risk factors associated with the Gulf War.

The U.S. Department of Defense and Department of Veterans Affairs supported the research.

"To me, this study caused a renewed interest in the environmental factors in ALS," Mitsumoto said. "I strongly believe that a rekindling of ALS epidemiology [the study of disease patterns] is the most important spin-off of this Gulf War study. We must pay more attention to genetic and environmental interaction as a cause of this dreaded disease."

MDA is now considering involvement with a large-scale study of ALS epidemiology in the United States.

Two Studies Agree

MDA physicians Hiroshi Mitsumoto and Yadollah Harati were among the study authors.

A second study of ALS development in Gulf War veterans was conducted by epidemiologist Robert Haley of the University of Texas Southwestern Medical Center in Dallas. Haley found 20 cases of ALS, 17 of which were diagnosed in subjects under
age 45.

He found that the number of new ALS cases observed in veterans during the first four years after the war — 1991 through 1994 — was about the same as the expected number for males of the same age. However, over the next four years, the observed incidence of ALS in the Gulf War veterans was about twice the expected number. The highest incidence occurred in 1998, the last year of his study, when new ALS cases were three times the expected number among the vets.

Harati says the two studies support each other and that together they suggest a real difference in ALS incidence in Gulf War veterans compared to others.

He admits that he and many other neurologists were initially skeptical of veterans’ claims of an excess occurrence of ALS following the Gulf War, but he says the study results have changed his mind.

Harati notes that Haley’s study was conducted with the support of the [Ross] Perot Foundation, which "hoped" to find an increase in ALS cases, while the federal agencies behind the government study had probably hoped not to find one.

"Then, lo and behold," he says, "they were in agreement."

The agreement between the two studies, he says, "is a strong statement."

Questions About Cause

When it comes to the biological implications of the two studies, Harati is uncertain.

"My feeling is that the stress of war itself, or the stress of the training in the military, or the makeup of these individuals — the fact that certain people are being selected for service — could all be factors, but that is the purest speculation."

As to whether U.S. troops now in Iraq are facing an increased risk of developing ALS, Harati was also uncertain.

"If you say that the stress of war somehow contributes to it, yes, they’re in the same position. But if you say the Gulf War findings had something to do with toxins, with fumes from burning oil, with depleted uranium, then these are probably not happening this time."

Veterans of the Gulf War who develop ALS are eligible for service-connected benefits from the Veterans Administration. For more information about this, go to www.va.gov/health_benefits or call (877) 222-VETS.

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STUDIES SHOW . . .

David Schoenfeld

It seems nearly every day the media have something to tell us about health in general or ALS in particular. Studies can "show" that health is improved by drinking green tea but maybe not brown tea, eating dark chocolate but not milk chocolate, avoiding caffeine, exercising more, exercising right, being married, breast-feeding babies, staying out of the sun, getting enough sun, and so forth.

The MDA/ALS Newsletter presents the first in a series of columns on how to interpret this barrage of medical information. The articles are written by biomedical statistician David Schoenfeld of Massachusetts General Hospital in Boston and MDA Medical Editor Margaret Wahl.

Schoenfeld, who holds a doctorate in mathematics with a concentration in statistics from the University of Oregon in Eugene, has designed and analyzed clinical trials in ALS, organ transplants, cancer and respiratory distress syndrome.

He’s co-authored more than 100 articles on statistics in medicine, and has been affiliated with the State University of New York at Buffalo and Harvard University’s School of Public Health and Medical School, among other institutions.

Schoenfeld has also been an adviser for the World Health Organization and was part of the Environmental Protection Agency’s investigation of the chemical-landfill-turned-environmental-disaster at Love Canal in Niagara Falls, N.Y.

The Overworked Teens and the Tokyo Survivors

by David Schoenfeld with Margaret Wahl

"High school students who work more than 20 hours a week are less likely to get into four-year colleges, so make sure your teenager doesn’t work too many hours outside of school."

"ALS patients in Tokyo live longer than ALS patients in Boston. The difference could be that assisted ventilation in ALS is more common in Tokyo."

These are the kinds of news reports one hears nearly every day. But are they reliable? And do they really mean what they seem to mean? Without knowing how the study that led to these reports was conducted, it’s hard to say.

Which news media reports can you rely on for accurate reporting of scientific findings? Can you be sure that the interpretation of the research fits the scientists’ findings, or is it a reporter’s conclusion?

There are many factors that influence how scientists publish the results of their studies. Yet other factors come into play when the popular media — newspapers, TV news programs, online news services — decide which studies to report and how to cover them.

This series will explore several of those factors, and suggest ways that you can read science news with a healthy skepticism. Our goal is to help you become better able to interpret news about findings in ALS and other topics that interest you.

What Does It Mean?

Looking at the two items cited at the beginning of this story, on careful reflection, one could imagine quite a different interpretation of each case.

Maybe the teens who worked more than 20 hours a week weren’t planning to go to four-year colleges in the first place because their families couldn’t afford to send them. Maybe if they hadn’t worked at least 25 hours a week, there wouldn’t have been enough money for college at all.

And maybe the genetic background of ALS patients in Tokyo is different from that of the Boston patients, resulting in respiratory muscles that stay stronger longer. Maybe it’s not the ventilation that made the difference.

How do you know what to think? How do investigators sort out fact from suspicion?

Matching Subjects

One way is through the use of a matching "control" group. Control groups, which can be thought of as "comparison" groups, ideally are made up of people who have the same characteristics as the group under examination except for the key factor being examined — the one factor whose influence is being measured.

Take the case of the possibly overworked teenagers. To study this issue properly, you’d have a control group matched to the over-20-hours group on the basis of standardized aptitude tests administered before high school, area of residence and family income.

If all those factors were the same, and the students with the 20-plus working hours were still less likely to attend four-year colleges, then one might reasonably conclude that their job time had in fact interfered with homework or made them too tired to pay attention in class, thus affecting their college admissions.

But if the study showed there was no difference in the two groups, or if in fact the under-20-hours student workers were less likely to attend four-year colleges, you’d have to assume that factors other than long work hours explained the college admissions discrepancies, or that the more demanding jobs made the students more prepared for college.

Let’s say you want to find out whether one type of ALS treatment is better than another, or better than none. You can’t compare a group of ALS patients in Tokyo who got treatment A with a group in Boston who got treatment B, because the two groups have many differences other than the treatments.

Unfortunately, many newspapers, and even a few professional journal reports, don’t describe a matched control group, leaving the interpretation of the results up for grabs.

Even patients from one section of Boston can’t reliably be compared with patients from another part of the city who got a different treatment until they’ve been checked to see if they "match" on demographic and illness-related characteristics.

Randomizing Assignments

The best control group is "randomized." Patients in a drug study, for instance, are selected according to exactly the same criteria. Then they’re randomly assigned to one treatment or another (or no treatment). (Of course, you can’t randomize subjects who choose their own course, such as working hours or ventilator use.)

The bottom line: When you read a study report, ask yourself, "What groups were compared? Were they the same on all the characteristics except the one being examined in this study?" If not, then the study may really be measuring something other than what’s been reported.

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ALS Research Roundup

German Researchers Find No ALS Connection in ‘Detox’ Genes

Researchers at several German universities have failed to find support for a popular hypothesis concerning ALS causation — namely, that the genes of people with ALS may be less capable of detoxifying environmental pollutants, drugs and other chemical compounds.

A.C. Ludolph at the University of Ulm, and colleagues, examined eight genes in 150 people with sporadic (nonfamilial) ALS and 373 people without ALS, publishing their results in the August issue of the Journal of Neurology, Neurosurgery and Psychiatry.

The researchers found no examples of genetic variations in the ALS patients that would be expected to increase chemical toxicities. All the genes examined carry instructions for enzymes that either increase or decrease the toxicity of chemical compounds.

The two groups’ DNA showed significant differences in only two of the genes examined. In one case, the ALS-affected subjects were more likely to have a "B" version instead of an "A" version of the gene for an enzyme, but the researchers found no difference in the activities of these two enzyme versions.

In another case, they found that those with ALS were more likely to have a less active version of a toxifying enzyme — which could only be an advantage.

"We conclude from our data," the investigators say, "that an involvement of the analyzed toxifying and detoxifying enzymes in the pathogenesis of ALS is most unlikely."

Chromosome 16 Finding Goes Beyond the Obvious

The recent identification of a small region of chromosome 16 that contains an ALS-causing gene may not, at first glance, seem like much cause for rejoicing.

The identified chromosome 16 region, which investigators hope soon will yield a specific ALS gene, will likely account for "a small fraction of families with familial ALS," says Jonathan Haines, a molecular biophysicist at Vanderbilt University in Nashville, Tenn., who worked on the study.

But, Haines notes, "It is very important, because it further demonstrates that there is substantial heterogeneity [variety] in ALS, meaning that a number of different genes can be perturbed or changed to cause ALS. Each of these genes, when found, will tell us something more about the biological process that causes ALS and thus more about how to prevent the dysfunction in that process."

'Living With ALS' Study Extended

A study of the mental health and well-being of people with ALS and their caregivers, being conducted by epidemiologist Steven Albert at Columbia University in New York, has extended its enrollment through the end of the year.

The investigator wants to study 100 patient-caregiver pairs living within 100 miles of New York. The person with ALS must be able to think clearly and have a severely diminished respiratory capacity or be considered terminally ill.

For information, contact Steven Albert at (212) 305-2503 or sma10@ columbia.edu.

Airway Clearance Vest Under Study in ALS

Advanced Respiratory of St. Paul, Minn., which makes and distributes The Vest, a device that vibrates the chest wall to mobilize mucus, is testing its product to see if it helps with secretion management in ALS.

In May, the U.S. Food and Drug Administration approved The Vest for treatment of chronic lung disorders.

This company-sponsored study of 100 people with ALS will take place at six U.S. centers and will last nine months, although the investigators require participants to commit to only three months.

Those completing the first three months will have the option of using The Vest for the next six months, with further tracking of their respiratory status. Those who want to continue in the study and not use The Vest are also welcome.

During the study, participants can’t use a cough assistance device, have a tracheostomy, participate in any other ALS trial or have signs of congestive heart failure.

The study’s medical adviser is neurologist Hiroshi Mitsumoto, director of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York.

For more information, see www.thevest.com.

Study sites are:

BALTIMORE

Johns Hopkins School of Medicine
(410) 955-8511
rkimbal1@jhmi.edu

MINNEAPOLIS

Hennepin Multispecialty Clinic
(612) 341-7907

NEW YORK

Columbia Presbyterian Medical Center
(212) 305-3632
jm5ALS98@columbia.edu

Mount Sinai School of Medicine
(212) 241-8984
lina.mina@mssm.edu

PHILADELPHIA

Drexel University College of Medicine, Hahnemann Campus
(215) 762-5186
tap23@drexel.edu

SAN FRANCISCO

California Pacific Medical Center
(415) 600-3949
hartef@sutterhealth.org

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Exercises to Do on the Run: Simple Ways for Caregivers to Resist Injury

by Christina Medvescek

It just takes one little wrong move, like leaning over to tie a loved one’s shoelace, for something to pop in the lower back and put you out of commission. For the caregiver of a person with ALS, this kind of injury can be disastrous.

"Loads of people have had to give up caregiving due to injury," says Brenda Shaeffer, a physical therapist at the MDA/ALS Center at Johns Hopkins University in Baltimore. "Then they have to find someone else to provide care, or in some cases find a nursing home."

Good body mechanics (like lifting with the legs, not the back) and assists (like a Hoyer lift or another person) significantly reduce the risk of injury and always should be used. But unless you’re also taking care of your body, a back, neck or shoulder injury may be just one wrong move away.

Muscles need flexibility and strength to resist injury — and stretching and strengthening exercises are the way to achieve those goals.

Wait! Don’t run away at the mention of exercise! We’re not talking about an hour-long trip to the gym, but exercises that fit neatly into odd moments of the day, like when you’re watching TV or sitting at a traffic light.

And the beauty is, "whatever you can do will help," says Jean Hill, a physical therapist with the Kessenich Family MDA/ALS Center at the University of Miami. "A little bit here and there all adds up."

Bad Habits

Most adults have bad body habits, like poor posture or only moving in a few routine patterns. Childhood falls have caused many adult bodies to become slightly asymmetrical, making one side tighter than the other.

The result of these habits is that muscles only stretch within a limited range of motion that works OK for everyday life, but doesn’t stand up to stress.

"Injuries occur when you put your body into positions it’s not used to," explains Lee Burkett, professor in the Department of Exercise and Wellness at Arizona State University in Tempe. "When your muscles are supple, you can put your body into more positions than you could before."

Beyond flexibility, leg and hip strength is vitally important for lifting, and strong abdominal and buttocks muscles stabilize the lower back region.

Opportune Moments

There are dozens of opportunities during the day to fit in quick, gentle exercise.

You can perform the exercises listed below while you’re: on hold on the telephone, using the bathroom, filling the coffee pot, working at the computer, sitting in a waiting room, standing in line, cooking … basically anytime you have a spare 30 seconds. If you pair an activity with an exercise — for example, always doing partial squats while waiting for your toast to pop or hamstring stretches during TV commercials — you’ll improve without even realizing it.

If you already have painful back, neck or shoulder muscles, check with your doctor before undertaking any of the exercises below.

Stretch Like a Cat

Stretch to the edge of comfort but not beyond, or you may trigger a stretch reflex that actually contracts the muscle and defeats your efforts. Pain isn’t the point, nor is distance. Luxuriate in a stretch, the way a cat does.

Hold stretches about 15 to 30 seconds, repeating two or three times. Never bounce to get a greater stretch.

• Lower Back Stretch: Tight hamstring muscles can cause back pain, says John Klune, physical therapist at the MDA/ALS Center at the University of Arizona Health Sciences Center in Tucson.

Stretch your hamstrings by sitting in a chair with your feet up on a footrest or coffee table. Keeping your knees straight, lean forward until you feel an easy, not painful, stretch.

• Shoulder Stretch: Scratch your back. First point your elbow in the air and scratch the top of your spine. Next, curl each arm around the front of your neck and scratch over your opposite shoulder. Finally, hold your elbow down by your side and twist your hand back up between your shoulder blades.

• Chest Stretch: Place your hands at shoulder height on either side of a doorjamb, then step into the doorway so your arms slightly wing out behind you. Feel the stretch through the middle of your chest.

• Neck Stretch: Lower your ear to your shoulder on either side.

Get Strong

The rule of thumb for strengthening without weights is to tighten your muscles to their maximum, hold for a count of 10, relax for a count of 10 and do 10 repetitions. Be sure you’re stable, either by taking a wide stance or by holding on to a secure object.

• Legs and Hips: Whenever possible, climb stairs instead of using an elevator. In addition, try partial squats. Hold on to a stable object like a countertop. Keep your back straight and slowly lower as if you’re about to sit down. Go down as far as comfortable, then back up.

For greater effect, use only one leg at time. You also can work on leg strength each time you get up from a desk or table, by rising from the chair using only one leg. Hold on to the table for stability but don’t pull yourself up. Alternate legs for an equal workout.

• Lower Back: Here’s an exercise nobody will even know you’re doing. Whenever you think of it, squeeze your buttocks or your abdominal muscles as tight as you can and hold. "You can’t overdo it," says Klune.

A recent San Diego State University study of abdominal exercises found that they should be done frequently rather than for intense periods. Five minutes a day can make a difference if done regularly.

• Shoulders and Arms: Take a weight like a shoe or soup can and lift it straight up in front and to the side, from your waist all the way over your head.

Hold arms straight out to the sides at shoulder height, then bring one arm across in front of your chest, keeping the elbow straight. Go just to the point where your arm starts to bend, then back.

Force your shoulder blades together in the back, then relax, then push them together again. Do shoulder shrugs that bring your shoulders up toward your ears, as if you’re saying, "I don’t know."

• Neck: Place your palm in the middle of your forehead and gently press, resisting the push by holding your head still. Repeat on each side and the back of your head.

These are just a few of the many exercises that will help keep your muscles supple and strong. For more information, Betsy Curless, physical therapist at the MDA clinic at the Via Christi Medical Center in Wichita, Kan., recommends these books: Treat Your Own Back and Treat Your Own Neck, both by Robin McKenzie (Spinal Publications LTD, 1989).

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A NEW LIFE WITH ALS

MDA Telethon — Where the Love Is

by Steven and Jennifer Bishop

The experience of attending the national Jerry Lewis MDA Telethon in Hollywood is surreal. If you can imagine a television studio filled with pure love until the sides busted out, it would be close.

One might think that, after 38 years of Labor Day Telethons, the process might become mundane or almost calculated. On the contrary, this was our second year to go to the national show in person, and it was even more intense than the first.

The talent is so varied that it truly makes the Telethon one of the greatest shows on earth. The performers are generous with their time, volunteering just to help break last year’s record of donations.

And the amazing Jerry Lewis, Telethon star, somehow gets more passionate with each passing year. What you don’t see on TV is his personal reaction to each of the families who appear onstage to share their stories.

He knows it isn’t easy for them to open up during a difficult time in their lives in order to raise disease awareness and funds for research. He’s so touched by the families’ courage that at times we saw him bury his head in his hands in emotion — something not shared on camera. This passion comes from a man who’s defied the odds with his own health for decades and this year was struggling for every breath.

Our point in relaying this experience is to remind you that we don’t always realize who’s fighting for us. In MDA, each of us has an extended family that truly empathizes with what we’re going through.

We believe that all the neuromuscular diseases in MDA’s program must be somehow connected, and we find Telethon a wonderful time to think of others and not just ourselves. It’s also the time of year to remember that there are so many others facing adversity and to learn about ways they stay positive. We’re constantly learning and growing through every person we meet.

How special we should all feel that people care so much about us!

Many of the celebrities we met this year touched us emotionally, and we’d like to tell you about just a few. The beautiful and talented Jann Carl from "Entertainment Tonight" — the Telethon’s wonderful co-host — stole our hearts last year. Before each interview, she’d come over and talk to the family to ease their nervousness about being on TV in front of millions of viewers.

Jann is one of the classiest women we’ve ever met. After staying up for 21-plus hours, she mingled with all the families and took pictures for almost an hour after the show was over.

Another person we were thrilled to meet was Charo. What an amazing amount of energy she has. Her devotion to MDA is obvious from the nearly 25 years she’s performed on the Telethon and assisted the MDA community. When we met her she was very open and easy to talk to although a little difficult to understand!

Someone who especially impressed us this year is 15-year-old recording artist Billy Gilman, MDA’s national youth chairperson, and his managers.

Billy gives us faith in the young people who are our future. The children, grandchildren, nieces, nephews or friends’ children in our lives present us with an opportunity to teach some pertinent lessons, such as enjoying every day, making time to spend with the people they love, meeting new people and allowing them in their lives, along with all the other things we learn about life when we discover how easy it is to lose.

That mission alone can give us purpose that can keep us motivated and help us stay positive when we most desperately need to be. A focus on educating the younger generations keeps us from wallowing in our physical decline. Thanks, Billy, for taking a leadership role along with Mattie Stepanek in delivering these very important messages to our humanity’s future.

The Jerry Lewis MDA Telethon is about education, entertainment, hope and love. It gives us all these things that are essential for our ability to handle the challenge of ALS. And the Telethon lets us know that good people are working diligently to help us — not just on Labor Day but throughout the year.

Steven and Jennifer Bishop are co-chairpersons of the ALS Division of MDA. Steven received an ALS diagnosis in March 2001. The Bishops live in Arvada, Colo., with their 5-year-old son, Christopher. Join the Bishops every other Wednesday for the PALS With Children chat at www.mda.org.

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ALS Online

Beginning Oct. 1, the Bishops’ chat, PALS With Children, will be held at a new time — 9 to 10 p.m. Eastern.

Steven and Jennifer Bishop, co-chairpersons of MDA’s ALS Division, lead the chat, which is open to people with ALS who have children of any age. The chat is held every other Wednesday.

Watch www.mda.org/chat/cli-res-host.html for announcements of upcoming chats about ALS.

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The Attitude Makes the Man: Albertsons Executive Lives With ALS

Kay and Wayland Waggoner

by Kathy Wechsler

Wayland Waggoner of Boise, Idaho, refuses to let ALS get him down and has a sensible approach to life’s challenges. He puts others at ease by making them laugh.

"I try to focus on the things I can control and not let things I can’t control bother me. ALS falls in the category I can’t control," said Waggoner, 58, whose motto is "I am not dying of ALS, I am living with ALS."

A GLITCH

Waggoner thinks of ALS as just a malfunction of this wonderful machine known as the body. He was found to have ALS in October 2000 after experiencing problems with speech and swallowing.

Because of serious pneumonia, Waggoner had a tracheostomy early this year, which allows the lungs to be suctioned. He uses oxygen mist constantly, The Vest to clear mucus from the lungs and a BiPAP with humidifier to help him breathe while asleep. Waggoner is unable to speak and communicates with a DynaWrite.

The effect of ALS on his mobility was slow, and Waggoner can walk around the house using a cane for stability.

"I need to use both hands to write and do not have strength to hold an article but have a firm handshake," said Waggoner, who finds his right arm and hand to be weaker than his left.

A FAMILY

Waggoner and his wife, Kay, who recently celebrated their 35th wedding anniversary, have three grown children and two grandchildren. His children help with "dad sitting," yard work and grocery shopping.

"ALS has brought us much closer, sharing memories and laughs about events unique to our family," he said.

Waggoner, who was director of sales tax and licenses for 16 years at the Albertsons’ headquarters in Boise, used to enjoy running, baking bread and woodworking, but now spends his time reading, doing crossword puzzles and watching sports, biographies, current events and history on TV.

When Waggoner left his job in January, his co-workers gave him a hand-stitched quilt, made up of squares signed by all. Albertsons has been a leading MDA sponsor for years through programs such as Aisles of Smiles, Shamrocks Against Dystrophy, Muscle Team Dinners, and golf and bowling tournaments.

In February 2004, at the Grove Hotel in Boise, a dinner honoring Albertsons CEO Larry Johnston will raise funds for MDA. Festivities will include auctions, dancing and the handing out of MDA Spirit Awards to kids who attended MDA summer camp.

A COMMUNITY

"MDA-sponsored clinics are very valuable in helping deal with various issues, such as physical, speech and respiratory therapy as well as eating and swallowing issues," Waggoner said. "They understand ALS and are there to help you replace or cope with lost functions."

Waggoner has found ALS support groups helpful to his family: "We have learned how to handle daily challenges and shared with others our experiences."

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