Stricken general keeps up the fight

Retired officer urges Congress to help find cure for Lou Gehrig's disease

Retired officer urges Congress to help find cure for Lou Gehrig's disease

WASHINGTON — Just getting to the microphone here Thursday could be considered a major victory for retired Air Force Brig. Gen. Tom Mikolajcik.

That's because Mikolajcik has amyotrophic lateral sclerosis, a degenerative nerve disease that has robbed him of all use of his arms and legs and soon could take his life.

Still, Mikolajcik continues to fight. He made the arduous nine-hour journey by van from his Mount Pleasant home to seek higher ground, specifically a House of Representatives' committee room on Capitol Hill.

He slipped on a pair of dress shoes, even though his feet are so swollen he seldom wears shoes around the house anymore.

He maneuvered through the halls of the Cannon House Office Building in his motorized wheelchair. His son, John, and two other men helped him don his suit jacket moments before his testimony was to start. His wife, Carmen, carried a briefcase of props and was there to lift a water glass and straw to his lips when his throat became dry.

"Only by the grace of God am I here to speak with you today," he told the committee, "and I have vowed to keep speaking until I no longer can."

He spoke for more than 10 minutes about the disease, which for reasons that no one can explain, has struck military veterans at about twice the rate of the general population.

ALS is more widely known as Lou Gehrig's disease, after the Yankee slugger who was one of its most well-known victims.

"It's been nearly 70 years since Lou Gehrig made his farewell speech, and we have basically nothing," he said. "One questionable drug in 70 years? How many thousands of private farewell speeches must take place before we realize we're not doing everything we can?"

His wife then emptied a briefcase of antique children's blocks on the hearing table, blocks that children would play with during Gehrig's time.

"These blocks represent ongoing ALS research," Mikolajcik said. "All are separate, none are connected and there is no communication going on between them."

Mikolajcik's voice and mind were as sharp as his body was limp. He showed emotion only when thanking his friend, Rep. Henry Brown, R-S.C., who helped arrange the hearing.

This was Mikolajcik's third trip to Washington to fight for ALS research, but his two previous trips involved wandering the halls of Congress and the Pentagon to talk up the problem. This was the first time he testified before a congressional committee.

The acting chairman of the Committee on Veterans' Affairs' Health Subcommittee, Rep. Phil Hare, D-Ill., told Mikolajcik, "You are an incredibly courageous person, and we will work very hard."

Mikolajcik worked in the Pentagon and is no stranger to bureaucracy, so he is well-equipped for the battle.

Steve Gibson, vice president of government relations for the ALS Association said "General Mik" has been an effective advocate.

"Veterans like General Mik will be the main reason why Congress steps up the fight in support of our military men and women living with ALS," he said.

James Heywood, chief executive officer of the Massachusetts-based ALS Therapy Development Foundation, said Mikolajcik is making a difference.

"It's very easy in medicine to confuse motion with progress. What a leader like the general brings is the ability to discriminate in a way that forces progress rather than simply motion," he said. "That's a very real skill."

While six others testified immediately after Mikolajcik, Heywood said, "Literally, I don't think they heard anybody else today."

While it's unclear how much longer Mikolajcik's health will allow him to keep up the fight, he talked optimistically Thursday about opening a second front.

Asked about his next step, he replied, "Can we get a Senate hearing?"

Reach Robert Behre at 937-5771 or at rbehre@postand courier.com