Below is a Letter that I wrote my Congressman.
Veterans with ALS need your help!!!. Please write your Congressman and ask for support in cosponsoring Bill H.R.5454.
Thanks
Bill Motley
Honorable Congressman C. W. Young,
I have written you many times about the disease Amyotrophic Lateral Sclerosis and you have always been very helpful, thank you. Today I’m writing with my concerns about ALS in the military and the fact all Veterans are twice as likely to contract this disease. I am asking you to Please co-sponsor H.R. 5454. This bill would make ALS a presumptive disease to ensure that Veterans with ALS would be able to receive the much needed health care that is required with this disease.
Below is my story as it relates to ALS.
Bay Area Native and Military Veteran Fights a Deadly Disease and Asks Lawmakers to Help
Dunedin, FL - At the age of 18, Bill Motley bravely served our country overseas in Vietnam. Little did he know at that time, his service may have been putting him at risk nearly forty years later, Motley was diagnosed with ALS and became just one of thousands of U.S. veterans who received that same death sentence.
ALS, also known as Lou Gehrig’s disease, progressively paralyzes its victims. The incurable illness attacks motor neurons in the brain and spinal cord, causing the muscles to waste away. Patients are robbed of their ability to eat, speak, and eventually breathe.
Veterans are nearly two times more likely to be diagnosed with ALS than someone with no history of military service. The fatal disease is hitting America’s heroes the hardest, but the cause remains unknown. It’s a mystery that’s puzzling researchers and patients who now find themselves in the middle of the disease’s devastating progression.
For Bill Motley, it all started with muscle twitches. The avid runner began to realize that he could not hold his head up. Then soon, he couldn’t hold his arm up either. “I just knew something was wrong because things were just not right,” Motley said.
He and his wife began to travel to doctors around the country only to be tested, poked, and prodded. After receiving several ALS diagnoses, Motley finally accepted his fate in Baltimore. Doctors gave him only two to five years to live, and the truth sank in as they traveled back to their hometown of Dunedin, FL. “I think we cried all the way back from Baltimore. We kept driving and crying. That was hard. That was the worst trip I’ve ever made,” Motley’s wife, Camille said.
Motley continued to run races and work as a Code Enforcement Officer for the city of Tarpon Springs. Then the disease forced him to quit. He can no longer run or work, but unlike many ALS patients, Motley can still speak, eat, and walk since doctors have said his progression is slow. He attributes the strength of his legs to his background in running. Still, Motley is reminded every day of how his life has progressively changed. Now, he depends on his wife to help him accomplish even the simplest tasks. “Everything is harder to do. Camille has to help me with bathing, and she has to help me with dressing. She buttons my shirts, fastens my pants, and buckles my belt,” Motley said.
Motley’s arms and hands lie nearly limp by his side as he explained his situation through tears. “Everything that you take for granted, you need help doing. If someone were to hand me a cup, I would drop it,” Motley said.
Motley looks back on military memories - basic training in Fort Jackson, specialized training in Texas, and warfare in Vietnam. Now, Motley strongly believes that some portion of that military experience could have brought on the disease. As researchers continue their quest for a link, Motley and other patients like him are asking lawmakers to do more. Motley believes that he and the military heroes that served with him are bearing the brunt of the chemicals that were sprayed. He says he wants legislators to acknowledge the problem and provide assistance.
Through each challenging day, Motley maintains a sense of optimism. “I think I am very lucky. I think that God has blessed me with a slow progression, and there is a reason that He is doing this,” Motley said.
He spends his time getting involved in the community. He serves on the local ADA Committee and on an Environmental Quality Committee – both steps which the disease has driven him to take.
Now, instead of focusing on the negative, Motley and his wife have vowed to use the strength they have left to fight the disease. He’s already coped with ALS for four years, and he plans to long outlive the odds doctors gave him. The couple’s strongest attack on ALS will come when they join with hundreds of people who have also been affected by the disease at the ALS Association’s Walk to Defeat ALS. Motley and his wife have rallied together a large group of family and friends, who they call the “Motley Crew,” to walk with them on April 12. They can only hope their steps will help researchers find the link between ALS and the military, a cause for the deadly disease, and ultimately a cure that could save his life.
Thank you for your consideration in this matter.
Respectfully,
William K. Motley
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