Dyle goes to Washington for bill
Published 4:11 pm Tuesday, July 3, 2007
You may remember Billy Dyle. He is suffering from ALS, Amyotrophis Lateral Sclerosis or Lou Gehrig’s disease.
He went to Washington, D.C. to enlist support for registering ALS at the Center for Disease Control, (CDC). The ALS Association is trying to get the 110th Congress to pass the ALS Registry Act which will authorize the creation of an ALS registry. The ALS Association says this will “help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS. The ALS Registry Act is expected to be introduced in the 110th Congress by Majority Leader Harry Reid (D-NV) and Representative Eliot Engel (D-NY).”
Dyle’s efforts were successful as every Mississippi representative and senator has signed on to co-sponsor this bill.
Another interest of the ALS Association is to urge Congress to direct funding to the Department of Defense to more deeply research ALS because more incidents of ALS occur in military veterans than in other walks of life.
At the conference, Dyle was Mississippi’s representative, and the only ALS patient from Mississippi. This year’ conference saw a representative from every state of our union.
He went for testing again and his speech, breathing and swallowing is doing well. He has lost more use of his hands and feet in the past month.
“But, I’m still going,” he said with a grin.
He is most especially grateful to a couple from Baton Rouge, Philip and Brenda Legendre. Her mother, Irene McLaughlin, had ALS. When McLaughlin died from the disease, the couple inherited her van which was equipped with all the handicap devices needed for a person in a wheelchair. They donated that van to the Dyles for his use. Now he can carry his powered wheel chair with them when they go every three months to M. D. Anderson to see Dr. Stanley Appel for his check-ups.
“They have programs there (MDA/ALS Center at Methodist Hospital Neurological Institute, Houston, Texas) that help families adjust and prepare for what’s to come. It isn’t doom and gloom with them,” Dyle said.
It is a progressive neurodegenerative illness generally showing up in middle age, around mid-fifties, although young people can contract it as well as children. It attacks voluntary motor muscles like the muscles in your arms and legs.
ALS is a are disease with about 5,600 people per year diagnosed with it, and only 10 percent of those contract familial which means it is inherited from parents or it appears in the family. The other 90 percent contract sporadic ALS which is the kind Dyle has. It is not contagious. More people die of ALS than multiple scleroses, and the life expectancy is usually two to five years after the first symptoms appear. Dyle is past that mark and still mobile with a walker, but does have to depend upon a wheelchair these days.
People with ALS and one other disease can receive Medicare almost immediately without the usual two-year waiting period. But Mississippi does not have the low interest loans available for those who need to renovate their homes to be disabilty-friendly. Dyle is working on that aspect as well. His goal is to make it easier for anyone with ALS to be diagnosed correctly and to get the help they need. Too many, he says, are misdiagnosed because ALS mimics other diseases.
If you want more information on this, you can visit www.als-mda.org. Sept. 29 in New Orleans there is a “Walk to DeFeet ALS”. For more information or to donate to Billy’s Buckaroos, Billy Dyle’s team, visit http://walkla.alsa.org.