Retired Air Force general brings fight to ALS

Retired Air Force general brings fight to ALS
By Jill Coley - The (Charleston) Post and Courier
Posted : Monday Jan 21, 2008 11:50:41 EST

CHARLESTON, S.C. — Four-and-a-half years have passed since Tom Mikolajcik was diagnosed with Lou Gehrig’s disease. Seventy percent of people with amyotrophic lateral sclerosis die within five years. Time is not on his side.

Now, Mikolajcik must make decisions about how he will face the last stages of the disease before he loses the ability to do so.

The degenerative disease, which is known for killing New York Yankees first baseman Gehrig, 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. Eventually, speaking, breathing and eating are affected.

Patients must decide if they want to go on a ventilator and feeding tube to hold off the inevitable a little longer.

“Today, my decision is, I will put in a feeding tube even before I need it,” Mikolajcik said. “Today, my feeling is, I want to go on a ventilator as long as I can communicate with family and friends.”


Rest of article at: http://www.airforcetimes.com/news/2008/01/ap_als_080121/

The retired Air Force general and former commander of Charleston Air Force Base is taking charge of these critical decisions by participating in a medical study testing diaphragm-pacing stimulators in ALS patients. Located below the lungs, the diaphragm is the large muscle used for respiration.

The pacing device stimulates the diaphragm with surgically implanted electrodes to maintain muscle mass. The stimulator, already used in people with spinal cord injuries, might delay the need for a ventilator by more than a year.

During the surgery, a feeding tube also will be inserted, although Mikolajcik does not yet need one. “The sooner you have the procedure, the better,” he said.

Dr. Raymond Onders, director of minimally invasive surgery at the Medical University Hospital’s Case Medical Center in Cleveland, pioneered the technology and the procedure. The late actor Christopher Reeve, who suffered from a spinal cord injury, was Onders’ second patient to receive a stimulator.

ALS is a fatal disease, but theoretically, people could live indefinitely with a tracheotomy and ventilator. But most don’t want to do that, Onders said.