Grand Canyon State Games chief
Erik Widmark battling Parkinson's
The Arizona Republic | azcentral.com
by Scott Bordow - Jan. 21, 2012
As the cars drove by his Ahwatukee home, Erik Widmark lay prone on the driveway.
He had fallen -- again. How many times had it happened before? He didn't have to guess. He knew. Thirty times in 34 months. He had lived with the hand tremors and the muscle contractions, but this, this was too much. He couldn't keep his balance. Soon, he was certain, he'd fall and break something, an arm or a hip, perhaps.
Before he got to his feet, he had made the decision.
"I can't do this anymore," he said to himself. "I have to try to change the quality of my life."
Four months later, the tremors are gone. So are the muscle contractions, called dystonia. Widmark, the executive director of the Grand Canyon State Games, walks slowly, but with certainty.
He has Parkinson's disease -- a progressive disorder of the nervous system -- but he has his life back. In explaining how it happened, he unzips his San Francisco 49ers jacket -- his son-in-law, Adam Snyder, is an offensive lineman with the team -- and pulls down his shirt to reveal a purplish scar above his heart. He then grabs what looks like a cellphone and places it next to the scar.
The device beeps once.
"My voltage is OK," Widmark says.
Then he smiles.
"I'm the bionic man."
The surgery is called deep-brain stimulation, but Widmark's story began 17 years ago when he was signing checks and noticed that his right hand was shaking. Soon he began losing in racquetball, and he never lost in racquetball.
"I didn't like that," Widmark said. "I couldn't understand why. I wasn't that old. Then I started falling down on the court and taking some pretty severe bumps."
Widmark didn't get an immediate diagnosis. He was a tough guy, a former NFL receiver and coach and front-office executive with the Cardinals. He figured he'd just outlast whatever was happening to his body.
But the symptoms kept getting worse. After three years, Widmark went to the Mayo Clinic in Scottsdale, where doctors informed him he had Parkinson's.
"I was told I was in a battle I couldn't win," he said. "That was a little rough."
Widmark, 63, didn't keep the disease from his family. They had to know. But he didn't tell anyone else. For 11 years, even as the symptoms worsened, he kept the diagnosis within his household. The tough guy didn't want to let anyone know he was suffering, and he didn't want anyone to think he couldn't do his job. He took his medication, stuck his hand in his pocket when it was trembling and marched on.
But the pills couldn't stop the disease's progression. The symptoms got worse, to the point that Widmark knew he couldn't hide them. Finally, at a Grand Canyon State Games event three years ago, he let everyone in on his secret.
Asked why he waited so long, Widmark's eyes moistened, and he paused for several seconds.
"I was in the closet," he said. "But when I announced it, it was the weight of the world off my shoulders. I was very relieved."
It wasn't until September, however, after he had fallen in his driveway, that Widmark took a more courageous second step: Agreeing to undergo deep-brain-stimulation surgery.
Doctors had told him for months he was a candidate, but he had resisted. The details left him cautious: He would be awake for the operation, which was scheduled to be performed in three parts over an 11-day period, and there was risk of a brain hemorrhage that could cause his death or a massive stroke.
"It's pretty daunting," said Widmark's wife, Cinda. "He thought about it for a long time. And there are some doctors not in favor of doing that. But one of the doctors at Mayo said it would change his life."
That doctor, Virgilio Evidente, is a neurologist at the Mayo Clinic. He said only 10 to 20 percent of patients with advanced Parkinson's, as was the case with Widmark, undergo the operation, even though at least 50 percent are eligible. The reason: It's extremely expensive, and some insurance companies don't cover the cost. Plus, he added, "Not everybody wants their brain to be operated on. It's pretty scary."
Evidente told Widmark the surgery wouldn't cure him. There is no cure for Parkinson's. But he said it would slow the disease.
Widmark underwent the first stage of the operation Nov.18. As he lay awake on the operating table, Evidente drilled a hole in the left side of Widmark's brain because the tremors were worse on his right side. Using brain mapping, Evidente found the part of Widmark's brain that was abnormal -- it's often called a bullseye -- placed an electrode in the coordinates and then had Widmark make several movements with his right hand until the tremors stopped.
"The body basically switches on," Evidente said.
Four days later, Evidente drilled into the right side of Widmark's brain to help control the dystonia. The third operation was supposed to take place Nov.29, but Widmark told Evidente he didn't want to have to undergo another procedure. After the bullseye was found on the right side, Evidente inserted a lead into the back of Widmark's neck that fed to the generator -- think of it as a brain pacemaker -- implanted in his chest.
Widmark's recovery was immediate and dramatic. Evidente said patients need up to six months for their condition to optimize, but Widmark is taking just one pill a day -- "I was taking every drug under the sun before," he said -- he can hold up his hand without it shaking, and his balance, although tenuous, is back.
"I'm doing things six weeks out that some people don't do for six months," Widmark said.
Widmark still has to go in twice a month for tweaking, a procedure in which doctors adjust the voltage on his generator.
"It's like a tune-up," Evidente said. "Instead of the patient being dependent on medication, this technology will keep the symptoms as if he had early Parkinson's. It turns back the clock at least 10 years."
The disease will begin to progress again in about a year, Evidente said, but slower than it had before.
Widmark knows the long-range forecast isn't good. But for now, he can take a walk, hold one of his five grandchildren and, if the 49ers beat the New York Giants in Sunday's NFC Championship Game, head to Indianapolis to see Snyder play in the Super Bowl.
"As long as the generator is still in there, and I can turn up the voltage I'm fine," he said. "I can't wait to get up every morning."
