Wineka column: ALS patient Mike Earnhardt among Diaphragm Pacing System pioneers
GRANITE QUARRY — Mike Earnhardt’s abdomen is like an electrical outlet, but plugging in means everything to his quality of life now as his amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, slowly progresses.
Back in December, Earnhardt became the second ALS patient in North Carolina to receive the Diaphragm Pacing System to assist with his breathing.
DPS uses a four-channel, battery-powered device that looks a lot like a big transistor radio. It already has improved Earnhardt’s quality of life and his voice.
He also hopes it extends his days on earth, giving him more time to spend with his new grandson, Andrew, and the rest of his family.
“It was a good thing,” Mike’s wife, Lisa, says of going with the DPS. “We want to keep him here as long as we can. We won’t let him give up.”
Not that Earnhardt will.
“I’m just the same old Mike I’ve always been,” he says.
The DPS device first attracted attention when it was used as a clinical trial on actor Christopher Reeve, known for playing Superman in movies. When Reeve, now deceased, suffered a severe spinal cord injury after a horse-riding accident, he was able to stay off a ventilator thanks to the DPS invention of Dr. Raymond Onders.
The publicity behind Reeve’s success with the DPS led to ALS patients asking whether it could help them in the latter stages of their lives. In 2004, the clinical trials extended to ALS patients.
Onders, the inventor, also saw his own sister fight and eventually die from Lou Gehrig’s disease.
In 2011, the Federal Drug Administration approved DPS as a humanitarian device, based on many clinical trials with ALS patients and those with chronic hypoventilation.
“Results showed improved survival and quality of life, including improved sleep, with the device over the current standard of care,” Medscape.com reported.
In simple terms, the procedure implanted small electrodes on both sides of Earnhardt’s diaphragm. The laparoscopic surgery to install the electrodes was not that invasive — about four incisions were made on the right side of his abdomen.
Doctors also installed a feeding tube, which Earnhardt probably will need later on but not at present.
Earnhardt says his operation Dec. 13 took three hours.
When plugged up to the DPS device — essentially a pacemaker for breathing — electrical stimulation or shocks are sent to the diaphragm muscles, allowing it to contract. It conditions the muscles to help with breathing.
Earnhardt describes the pulse as 2 seconds on, 2 seconds off. “After I have it on for awhile, I don’t even notice it,” he says.
Earnhardt views the DPS as combining a pacemaker and a TENS unit, or a transcutaneous electrical nerve stimulation unit. He’s wired, and Earnhardt knows it’s working.
“Before, my voice was like an 8-year-old little girl,” he recalls.
It also has stabilized his breathing for now. “My breathing numbers have dropped very little,” he says.
With ALS patients — Earnhardt calls the disease “the monster within” — the progression of the disease gradually erodes a person’s motor skills and often his or her voice. Toward the end, patients often are placed on ventilators or require a tracheostomy.
A barber for 40 years at Salisbury’s Southgate, the 61-year-old Earnhardt was diagnosed with ALS three years ago. Maybe because he was a cyclist‚ he can’t be sure, of course — the progression of Earnhardt’s ALS has been slower than most patients, and his breathing numbers were high enough late last year for him to qualify for the DPS device.
Only a patient at Duke Medical Center had come before him in North Carolina. Onders was on hand for a consultation with Earnhardt and his neurologist, Dr. James B. Caress of Wake Forest Baptist Health Center in Winston-Salem, and they were part of the team during the surgery.
In the beginning with DPS, as part of a conditioning program, Earnhardt would use his unit for only 30 minutes, twice a day. After awhile, he was allowed to keep it plugged in all night.
“That’s when I really felt the benefit,” Earnhardt says.
Now he’s using it throughout the night and much of the day.
The Earnhardts are on their third battery for the DPS. Batteries have a life of 500 hours.
To make him a little more comfortable and to help Lisa, who has been Earnhardt’s full-time caregiver, the couple have called in Hospice nurses who come to the house three times a week.
“It’s been tough on Lisa,” Mike says. “I tell people I’ll be all right, but pray for Lisa. ... We’re dealing with the progression, just doing the best we can as things come along. I think everybody has to do that.”
Earnhardt is still eating well. Drinking actually is more of a problem. Swallowing is difficult, as the muscles in his neck weaken. Earnhardt has to be careful not to aspirate and get fluid in his lungs.
Earnhardt is going to Wake Forest Baptist every two weeks. On those visits, his neurologist can adjust the DPS and turn the stimulus up a notch or two if needed. Earnhardt also has been going to the ALS clinic in Winston-Salem every three months.
Otherwise, every Sunday, Earnhardt travels with Lisa to St. Paul’s Lutheran Church, where he once was head usher. Lisa stations his wheelchair so a line of people can talk with him before or after the service.
Once again this Saturday, the men’s group at St. Paul’s Lutheran is having a Cruise ’n Barbecue fundraiser to help with the Earnhardts’ medical expenses.
Back home, Hospice has set up a bed for Mike Earnhardt near the breakfast nook window, so he has a good, comfortable view of his back yard, of which he once took meticulous care.
He answers the telephone sometimes. And if Lisa tapes his hand to a gearshift-looking mouse, Mike still is able to send emails to people, using his thumb to activate a button on top for clicking the various letters on the on-screen keyboard.
Friends keep sending him tons of cards, and Earnhardt sees a lot of his daughters, Christy Patterson and Andrea Earnhardt, and his three grandchildren: Kaylee, 11; Josh, 7; and Andrew, 4 months old.
Andrew was born just two days before Mike’s operation for the DPS, and because of complications with a kidney, Andrew had to stay in Levine Children’s Hospital in Charlotte for four weeks.
While Mike was supposed to stay only one night after his operation, he developed jaundice and had to recuperate in the hospital an extra three days.
“It was quite hectic,” Lisa says, recalling how Andrea kept traveling back and forth between Charlotte and Winston-Salem.
But nothing seems to discourage Mike Earnhardt.
“There’s just so much love,” he says. “I just didn’t realize all that was out there for me, until I got sick.”
As always, when you leave the Earnhardts’ house, the last thing Mike says is, “I love you.”
Contact Mark Wineka at 704-797-4263,or firstname.lastname@example.org.