Victory for vets with ALS

Two years of hard work came to fruition Monday in a move that could benefit thousands of veterans who suffer from Lou Gehrig's disease.

The U.S. Department of Veterans Affairs will grant a service-connected disability, the highest category of disability, to all veterans with ALS, or amyotrophic lateral sclerosis, a degenerative disease that affects veterans at a rate at 1.6 times the general population.

The news came during a conference call among Dr. James Peake, secretary of Veterans Affairs, Sen. Lindsey Graham and retired Air Force Brig. Gen. Tom Mikolajcik, who suffers from ALS and spoke from his Mount Pleasant home.

Mikolajcik cried when he heard the news. He deflected credit for the policy change and praised Peake and South Carolina legislators, including Graham, Rep. Henry Brown and Sen. Jim DeMint. "This will impact thousands of veterans," Mikolajcik said. "This is a reason to have hope — hope meaning helping other people endure."

ALS strikes about 15 Americans daily, shutting down nerve cells responsible for movement. Limbs weaken and atrophy before paralysis spreads to the trunk of the body. Seventy percent of people with ALS die within five years.

Mikolajcik was diagnosed almost six years ago. He still breathes on his own and gets out "a little bit," he said. In January, he was implanted with diaphragm-pacing stimulators to help maintain muscles used in breathing.

Previously, only veterans of the first Gulf War received full benefits for ALS. The new designation should take effect in August, Mikolajcik said.

There are eight categories of care in the VA system. A catastrophic illness could give a veteran Category 4 status, Mikolajcik said, and will

provide medication and some equipment.

"There's a huge difference between Category 4 and 1," Mikolajcik said. That difference, that could mean a disability pension, help with transportation and grants for home modification, he said.

Mikolajcik, who receives full benefits, said that he could not maintain his standard of living without the VA's help. And seeing other veterans go without those same benefits drove him to continue his campaign with legislators and officials.

"Patients with ALS ought to have an opportunity to have a quality of life," he said. "While I can't go to the beach and watch my grandchildren draw in the sand, they can be with me, and I can still have joy and quality of life. While my body's dead, I am not."

Why veterans are more likely to get the disease is unknown, Mikolajcik said. A voluntary registry of veterans with ALS recorded 2,117 people from 2003-07. Those are only the veterans who knew of the registry and made the call, he said. Today, only 800 of them are alive.

Mikolajcik met with the previous VA secretary in 2007, and he was told more studies were needed. In April, the retired general met with the new secretary, Peake, when he visited Charleston with Brown.

The former commander of Charleston Air Force Base has visited Congress three times to push for ALS research and testified before a congressional committee last summer.

"'No' is not an acceptable answer, not when it affects the lives of people who have served their country so bravely and valiantly," Mikolajcik said.

Reach Jill Coley at 937-5719 or jcoley@postandcourier.com.