Join Date: Jul 2001
Location: New Brunswick, NJ, USA
ALS victim doesn't want pity, he wants to help find a cure
Tuesday, August 16, 2005
ALS victim doesn't want pity, he wants to help find a cure
Erin and Craig Thomas
Craig and Erin Thomas look pretty much like any young couple in love. They sit side-by-side on a couch, and share glances and laughter. Erin hugs Craig often, and Craig holds Erin’s hand. On July 19, the Fort Calhoun couple marked their second wedding anniversary.
No doubt the day was bittersweet: Craig has been given a death sentence. Only God knows how many more anniversaries they’ll celebrate.
The couple met in July 2001 while both were working at a power plant in North Dakota. Erin was working full-time, and Craig was an on-site contractor.
Erin knew Craig was special from the beginning.
“It might have been the very moment we met,” she said. “Our eyes met and we had this smile on our face like we knew each other.” They began going out almost immediately, and it wasn’t long before their friends started asking when they were going to get married.
Craig made the moment one Erin wouldn’t ever forget. He surprised her by showing up in that same control room where he first saw her, only this time he was wearing a tuxedo and carrying two dozen roses. He went down on one knee to propose, and when she said, “Yes,” he had a limousine ready to whisk her away for a romantic dinner.
But in May 2003, just months before they were to be married, Craig noticed a twitch in his arm. It was a minor distraction. The wedding was looming on the horizon, as was a move to Nebraska. Then, in October 2003, Craig found he had lost strength in his right hand. That prompted the first of many trips to the doctor, then a trip to Mayo Clinic in Rochester, Minn., and untold numbers of tests and examinations. Just months of their wedding, an ugly acronym cropped up: ALS.
Amyotrophic lateral sclerosis (ALS) is best known as “Lou Gehrig’s disease.” Symptoms include muscle weakness and stiffness, as the neurons in the body gradually atrophy. In time, all the muscles, including those that control breathing, swallowing and speech become paralyzed. The disease’s progression is usually swift and always deadly. There is no cure.
But it didn’t seem possible.
“I didn’t fit the profile,” said Craig. “It generally strikes between the ages of 40 and 55.” Craig is only 28.
Diagnosis is difficult. There’s no specific test to determine if a person has ALS. Instead, every other possibility is first eliminated.
In January of 2005, Craig’s diagnosis was confirmed.
“I didn’t know which way to turn,” recalled Erin. “We had just moved to a big city where we didn’t know anyone, with no family nearby.”
“It was hard,” she said. “We had to lean on each other at that point. It was just a whirlwind. We had just gotten married and we were supposed to be in that newlywed stage.”
A friend of Craig’s family had ALS, so he was “somewhat familiar” with the disease.
“I knew it was terminal, with no treatment or cure,” he said. But Erin says he is analytical, always looking at every angle.
“I always stand back and look at things,” Craig said. “I decided how I needed to change our lives to get on through this.”
The main way is through faith.
“I try not to think, ‘why me?’,” he said. “I believe in God’s big plan, and I don’t feel it’s right for me to question what God has in store. This may be my opportunity to reach out to people instead of worrying about making money. It’s living the way God wants me to live, and sharing my faith with people.”
Craig’s ALS has begun to evidence itself. He has begun to lose the function of his hands and his speech is somewhat slurred.
“Every day, things change for me,” Craig said. “You make the necessary adaptations.”
The disease has begun its inexorable progression of removing Craig’s independence. He needs help fixing meals, and can no longer run. Getting dressed requires his wife’s help – he can no longer manipulate buttons or zippers or shoelaces. Even something like putting toothpaste on his toothbrush requires a helping hand.
“He needs to have assistance when I’m not here,” said Erin.
The cruel irony of ALS is that is does not affect the mind. As his disease progresses, Craig will be trapped inside a body that requires more and more aid in breathing, swallowing and eating. He will eventually be unable to speak with his beloved wife, or family, or friends. In time, he’ll rely on machines to eat and breathe.
But right now, Craig and Erin can fight back. They can’t fight the disease head-on; instead, they are focusing their efforts on spreading the word about ALS, and how organizations like the ALS Association can help patients and their families.
The Keith Worthington Chapter of the ALS Association serves Nebraska, Kansas and western Missouri. It provides a number of free services, ranging from support groups to the loan of durable medical equipment and computers. Training for families and care providers and a clinic at the University of Kansas Medical Center offer specialized support.
The ALS Association also lobbies for patients’ rights. In 2001, the organization was successful in waiving the state’s disability requirement for ALS patients. Ordinarily, there is a two-year waiting period. Because life expectancy for an ALS patient is typically two to five years, that formerly meant no chance of financial support. Today, the waiting period is six months.
In May of 2005, Erin and Craig traveled to Washington to help the ALS Association in its lobbying efforts to create a national ALS registry.
It’s estimated that more than 5,000 people are diagnosed with ALS every year in the United States. According to Steve Langan, awareness and development coordinator with the Keith Worthington Chapter in Omaha, the association knows of at least 35 ALS patients in the state. However, Langan said, the number is likely at least double that amount. Nationally, one in 50 families will be affected by ALS.
A national registry, Craig said, would enable doctors and researchers to compare data and link causes of ALS.
“Right now, 10 people could be seeing 10 different doctors and the doctors can’t talk to one another. (Reseachers) can only speculate instead of coming up with theories, crunching numbers and coming up with reliable answers.”
Creating a registry, conducting research and providing services to patients all takes money. With that in mind, Craig and Erin, along with a host of friends, co-workers and sponsors, are spearheading a number of fund-raising events.
Thanks to an idea from their coworkers at OPPD (Erin is an equipment operator at the North Omaha station, while Craig has worked at the Fort Calhoun plant as a field service engineer for GE Mobile Water), the couple will hold the First Annual Craig Thomas/ALS Association Fun Run on Aug. 28.
The event, which begins and ends in Missouri Valley, will offer an 85-mile “poker run” coupled with a charity auction, raffle, door prizes, a meal for participants, and a dance. Registration runs from 11 a.m. to 1 p.m. at Papa Joe’s bar.
“Everyone has been pitching in,” said Erin. “All this ruckus is to get ALS awareness out there.”
The event is open to all vehicles, not just motorcycles. Erin is hoping for a good turnout, and said groups from OPPD’s plants in North Omaha, Fort Calhoun and Nebraska City are planning to attend.
The couple want people to come out and have a good time. But anyone who needs information will also find that, as well as support, at the event.
In addition, Craig and Erin will be participating in the “Walk to D’Feet ALS” which is slated for Sept. 30 in Omaha’s Elmwood Park. Erin would like to have the biggest team participating, and welcomes anyone who would like to pitch in.
To help raise funds for that walk, a garage sale and car wash fundraiser is slated for Sept. 17. The event will be held at Heartland Family Dentistry in Blair.
In time, Craig and Erin will have to move from Fort Calhoun to be closer to Craig’s family in Missouri. Craig’s care will require more than just Erin’s help as the disease takes its toll on his body. There is no way of knowing how fast the disease will progress.
Craig could be one of the 50 percent of patients who live past three years, or among the 10 percent who live 10 or more years.
But the couple are adamant. They don’t want pity. What people can do, Erin said, is simple: Make donations to the ALS Association. Spread the word about ALS, and the Association.
“And pray for Craig, and all the patients with ALS.”
Editor’s note: For more information about the Fun Run, call Erin Thomas at (402) 306-5668 or Melanie Shultz at 468-5240. For more information about ALS or the Keith Worthington Chapter, call 991-8788, or see the website, www.alsa.mid-west.org.