ALS Has Become the Deadly Enemy That Veterans Least Expect

Dec 29, 2011

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ALS in Disabled Veterans Linked to Gulf War Illness

During a four-year period from 2003 to 2007, over 2,100 veterans with ALS were identified with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease. A 2008 report issued by the Research Advisory Committee on Gulf War Veterans Illness found that ALS was the most serious condition affecting Gulf War veterans. Other studies have found that military veterans who served during the last century in general have a 60 percent higher risk than non-veterans of developing ALS and have an earlier onset of the disease. In 2010, the Veterans Administration (VA) created a registry to identify veterans with ALS.

The Department of Defense and the VA began investigating a possible link between military service and ALS after the first Gulf War when they noticed an increase in veterans complaining of muscle weakness in the limbs, headaches, joint pain, slurred speech, difficulty breathing or swallowing, memory loss, and chronic fatigue—all symptoms of ALS. Eventually these symptoms were referred to as “Gulf War Syndrome.” Now they are believed to have been early symptoms of ALS.

ALS in Disabled Veterans Linked to Gulf War Illness

Twenty years ago, Upper Black Eddy, Pennsylvania resident, Jim Cassidy, was part of an elite Army Special Forces team and went on to serve as an intelligence agent in the Army Reserves. Now life for the 46-year-old veteran is a daily struggle to live with ALS. He uses a wheelchair, eats through a feeding tube and breathes with the assistance of a ventilator. He talks through a special computer program that reads eye movements. Scientists have yet to determine the cause of Cassidy’s ALS, but according to them, his serving in the military put him at a greater risk of developing the disease.

In Cassidy’s state of Pennsylvania alone, 850 people—including 104 veterans—have ALS, according to the Philadelphia chapter of the ALS Association. The Bucks County, Pennsylvania VA office knows of two ALS cases, but director Dan Fraley suspects there are more because ALS is a new service-connected disability. “The VA doesn’t advertise it,” he said.

ALS in Disabled Veterans Linked to Gulf War Illness

Patients who go to the ALS Clinic at Pennsylvania Hospital are asked if they did military service, a question which catches them off guard. “They almost always want to know why, which we can’t answer,” said Sue Schwartz, a social worker at the clinic.

Bob Haines, a World War II veteran, was diagnosed with ALS when he was 75. The 82-year-old was shocked to learn that his ALS could be service-related. “I didn’t believe it,” he said. “I didn’t expect this had anything to do with World War II.”

Jim Pinciotti, Executive Director of the ALS Association’s Philadelphia chapter, praises the VA for doing a good job informing the veterans they serve, but he feels they’re not doing enough to get the word out to the general veteran population. “When I speak to a group and speak about this fact, I see faces in the crowd with all of a sudden the realization and panic,” he said.

ALS in Disabled Veterans Linked to Gulf War Illness

Cassidy never engaged in combat when he served in the Army nor in the Reserves, according to his wife, Lisa. He had no family history of ALS, yet early symptoms appeared when he was 33. Lisa said he began experiencing weakness in his left hand, which they both attributed to a pinched nerve—despite no pain. The couple became concerned when the weakness progressed to muscular atrophy in Cassidy’s left hand and forearm, which made it difficult for him to grasp things. He developed muscle twitching in his upper arm and chest. After an electromyogram came back abnormal, Lisa, a physical therapist, feared her husband had ALS. However, doctors were reluctant to make a diagnosis because his condition progressed very slowly.

“When he first started with the symptoms, we always feared it was ALS. I actually sat my neurologist down and demanded to know why he didn’t think it was ALS,” she said. “In the back of my mind that is what I feared the most. For every neurology appointment we were in fear, ‘This is the time he’s going to say it’s ALS.’” Cassidy was diagnosed five years later at age 38. Lisa said that by then his speech was slurring and both of his arms were weakened to the point where he needed both of his hands to pick up things. Cassidy left his food scientist job in 2003 and Lisa became the family’s sole financial support. They have two sons, 11 and 9.

ALS in Disabled Veterans Linked to Gulf War Illness

His condition continued to deteriorate, requiring him to start using a power wheelchair two years ago and have a feeding tube inserted. Cassidy went on a ventilator earlier this year. Lisa is now his fulltime caregiver. The VA helps pay for her to get extra outside help. She says Jim’s health has improved since he went on ventilator. “As long as he stays free of complications, he can live a pretty long life,” she said.

Sources:
phillyburbs.com/blogs/working_my_butt/battling-a-new-deadly-enemy-als/article_250a1bd3-84f8-5619-ba8f-fa00cfe1a5c7.html
alsa.org/als-care/veterans/

Image source:
phillyburbs.com

About the author

Jill Liphart
Jill Liphart

Jill is a writer, blogger, social media and Internet marketer, work-at-home, single mom of 5. She provides news about issues that are important to people with disabilities, their loved ones, disability advocates and their friends.

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5 Comments

  1. Sophie
    January 03, 2012

    Sorry to hear about your condition. I am also a vet and was lucky enough not to be sent to the Gulf. I was in Panama at the time. I”m sharing so more vets can learn. Good thing you have a good wife. Blessings.

  2. Dick Swarzentruber
    May 17, 2012

    Hi Jim, wonderful artical. I talk to you mother and uncle Jim so keep up on how you are doing. You are an incredible person and contimue to fight so you can enjoy life with your family as long as God is willing. I always send you my love and healing energy. My thoughts and prayers are always with you. Love you. Dick

  3. Karol Weakland
    May 17, 2012

    Think of you and Lisa so often and keep up on FB, How fortunate that you have a loving and caring wife to make life worth living every minute. And the boys to keep your energy up. Your energy is so remarkable, as you are, love to you all. The article was great and a awakening. Karol

  4. C.S.Chapman
    February 18, 2013

    I was dx with ALS last Friday {Feb.15,2013}. My wife and me are still trying to wrap our heads around this. We always said we were going to get old together. Now were not so sure. Please pray for us and those like us, so that we can find out why this effects veterans more than civilians. Please feel free to email me so that we {the wife and I} can have some support….

    • Lisa Cassidy
      September 30, 2013

      I just saw your comment. So sorry I didn’t see it earlier. How are you doing? I hope you and your wife have found some support. Please feel free to contact us. We love to reach out and help others. We have been dealing with ALS since 1998 so we have become “experts” in some areas.
      God Bless!

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