Guardsman Copes with Lou Gehrig's Disease
May 28, 2009
- In 2001, the Department of Veterans Affairs acknowledged that ALS is a service-related disease for Soldiers who served in the Persian Gulf.
- "We found out veterans are 100 percent more likely to be diagnosed with ALS than any other people," Oyler said.
- don't really come to grips with something like this. You learn to accept it.
- It's one of those things where you're hoping for the best and expecting the worst.
It started with muscle twitches.
During a routine visit to his orthopedic doctor for a shoulder injury, David Oyler mentioned a minor problem with muscle twitches that seemed to be getting worse.
He was referred to a neurologist and underwent an MRI. And, in February of this year, the 42-year-old Alabama National Guard Soldier was told he may have amyotrophic lateral sclerosis, or ALS, more commonly known as Lou Gehrig's disease.
"I was shocked," Oyler said. "I was floored. I didn't know what to do."
Additional testing confirmed the diagnosis, and Oyler became another Soldier suffering from a disease that has been associated with military service.
In 2001, the Department of Veterans Affairs acknowledged that ALS is a service-related disease for Soldiers who served in the Persian Gulf War. In September 2008, the VA announced that ALS would be a presumptively compensable illness for all veterans with 90 days or more of continuously active service in the military. The decision was based primarily on a November 2006 report by the National Academy of Sciences Institute of Medicine on the association between active duty and ALS.
May is National ALS Awareness Month. Oyler wanted his story told in conjunction with the designation in hopes of informing other Soldiers who may be suffering from the early signs of ALS.
After his initial diagnosis, Oyler went to the ALS Clinic in Huntsville and the Kirkland Clinic at the University of Alabama in Birmingham for a second opinion and for information on the disease. The diagnosis was confirmed.
"We were just devastated. We both were," said Oyler's wife, Shirley. "That weekend he went to drill and I started doing research. I was on the computer all weekend learning about ALS."
Her findings helped the couple understand what they were facing.
"We found out veterans are 100 percent more likely to be diagnosed with ALS than any other people," Oyler said. "They don't know if it's environmental or something we were exposed to or the shots we were given or stress-related. Any Soldier having any of the symptoms should get checked because they are more susceptible to ALS. Any Soldier coming back from Iraq or Afghanistan or Kuwait needs to get checked."
ALS is a degenerative nerve disease that gradually destroys the ability to control movement. The cause of ALS is unknown, but studies have shown only 5 to 10 percent of cases are inherited. There is no cure.
Muscle weakness is one of the more common symptoms of ALS, occurring in about 60 percent of all patients, according to the ALS Association. Early symptoms include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrolled periods of laughing and crying.
More advanced systems include shortness of breath, and difficulty breathing and swallowing. As the disease progresses, there is advanced muscle weakness and paralysis. The survival rate after diagnosis is three to five years, but some live with the disease for five, 10 or more years.
"I don't know how fast this is advancing. I went from having twitches in February to weakness in my hands and loss of some mobility," Oyler said. "It's also having a slight effect on my speech. I am talking slower."
He also has cramps in different muscles. And there are more twitches.
"I'm starting to have some minor breathing problems," he said. "I'm waking up tired all the time. It could be from not breathing well in my sleep."
Oyler, a former Navy seaman, joined the Alabama National Guard in November 2000, becoming a member of the 1169th Engineer Group. In September 2006, he deployed for a year with his unit to Iraq, where he worked as a signal support systems specialist charged with making sure all communications, such as computers, radios and telephones, were operating in support of the unit.
Oyler continues to serve with his National Guard unit, which is now the 1159th Engineer Company. He still attends drill, but he is no longer doing push ups in the PT drills. He hopes to get permission to substitute riding a stationary bike for six miles for the two-mile run. He can still do the required sit ups. Oyler plans to retire from the Guard in the fall.
"Doing any kind of activity where you are overexerting yourself can do more harm than good. It weakens the muscles faster and takes longer to recover," Oyler said.
"But, at the same time, if you stick to a normal routine and are active, you will tend to have a better life," added Shirley Oyler. "If you give up, it will take over."
Oyler is on medication that doctors hope will slow the rate of his disease. He is also visiting an occupational therapist to help with the weakness in his hands. In July, he will begin treatment at Huntsville's ALS Clinic, where a multi-disciplinary approach is used to treat all symptoms of ALS.
"The clinic helps to prolong your quality of life because all the services you need, including occupational therapy, physical therapy, speech therapy and a neurologist, are all there at the clinic to provide the treatment you need when you need it," Oyler said.
Once an ALS diagnosis is made, a veteran immediately is considered 30 percent disabled, and they are entitled to health and disability benefits. The disability percentage goes up as the disease progresses. In 2009, the VA expects 416 new ALS cases.
"Eventually I will be 100 percent disabled," Oyler said. "The VA provides a lot of options for disabled veterans. They will help pay for a disabled vehicle when I can no longer walk. They will help pay to get our home wheelchair accessible. They will help us keep our quality of life as normal as possible."
Oyler has received help with obtaining VA benefits from Anthony Steele of Paralyzed Veterans in Montgomery. Jan Obermann of the Huntsville ALS Association has also helped him understand the disease and get the support he needs. Oyler and his wife, who is a NASA contractor, attend a local ALS support group.
The couple are trying to prepare themselves for the challenges ahead as the disease progresses. They've told their family members, including two of their three children and the oldest of their three grandchildren. They are going to take a trip to visit relatives in Oklahoma, and Oyler hopes to attend a NASCAR race and maybe even take a trip to Australia or a cruise. Eventually, Oyler will not be able to do the things he enjoys, including working in his garden, reading a book or traveling.
"My concern is when this disease progresses where he can't take care of himself and someone has to be home with him around the clock, will we be able to afford home health care' We've learned a lot about this disease and we hope to prepare ourselves for what is to come," Shirley Oyler said.
Oyler is facing ALS with quiet resolve.
"You don't really come to grips with something like this. You learn to accept it," he said. "There's nothing you can do to change it. You have to make up your mind to live every day as best you can. You spend time with your family. You do things that you might not be able to do in a few years. I'm not letting it control my life.
"This is one of those diseases where there's no way to tell how long it will take. In two years I could be bedridden or I could be on a ventilator. It's one of those things where you're hoping for the best and expecting the worst."