The last thing Rep. Pete DeGraaf needed last week was more stress in his life.
But only a day after a doctor confirmed what DeGraaf had long suspected — that he was suffering from Parkinson’s disease — he was back at the Capitol for the final stress-filled stretch of the longest legislative session in Kansas history.
Asked why during an interview in his small Statehouse office with his wife, Karen, at his side, DeGraaf’s answer was simple.
“I enjoy being a legislator,” he said.
But if DeGraaf, a conservative Republican from Mulvane, wants to continue serving, he will need to work at managing the stress that is a byproduct of the job. A growing body of research suggests that it plays a role in causing Parkinson’s disease and exacerbates its debilitating symptoms.
“While we don’t know the exact mechanism for this, it does appear that many patients describe worsening of symptoms, including tremor, slowness and difficulty walking when in stressful situations,” says a resource document produced by the Parkinson’s Institute and Clinical Center, a California-based nonprofit organization focused on clinical care and research.
DeGraaf, a former Air Force helicopter pilot who lists his current occupation as director of a financial consulting ministry, said he believes that his faith and the support he receives from Karen, who doubles as a legislative aide, can help him manage his stress and remain an effective legislator.
“This is another battle that we get to fight together,” Karen DeGraaf said, adding that a new drug regimen recently has improved Pete’s energy, stamina and ability to stay focused.
“Especially since the medications have helped so much and people are saying, ‘The old Pete’s back,’ I say this is where we need to be,” she said. “I don’t see that anything has changed in the last week since the official diagnosis.”
Basil Dannebohm, another Kansas lawmaker and Parkinson’s sufferer, tried to serve but couldn’t. In February, the Republican from Ellinwood resigned the seat he had won in November, saying the pace of the Legislature was exhausting him and making him weaker.
“I thought I could serve in the Kansas Legislature with young-onset Parkinson’s disease,” Dannebohm said at that time. “The simple fact of the matter, however, is that with each day that passes, I compromise my health more and more. While the disease has abruptly ended this chapter in my life, I hope to continue my fight for increased awareness and research.”
The symptoms of young-onset Parkinson’s disease from which Dannebohm suffers can be different — sometimes more debilitating — than those experienced by people diagnosed when they’re older.
Dannebohm was 33 when he stepped down. DeGraaf is 58 but said he now realizes that he started experiencing symptoms long before his official diagnosis.
“My sense of smell diminished 10 or 15 years ago. I had no idea that was related to Parkinson’s,” DeGraaf said, speaking slowly and deliberately to make sure the words loaded up in sequence. “That was an indicator that perhaps I was dealing with a loss of dopamine.”
Dopamine is a chemical messenger that transmits signals in the brain. Parkinson’s kills or impairs the neurons that produce dopamine, interrupting brain signals that control movement and sense of smell, among other things.
DeGraaf’s conservative views on abortion and other social issues occasionally have made him a controversial figure. In 2011, he sponsored legislation to remove abortion coverage from standard health insurance policies except when the procedure was necessary to save a woman’s life. He said women who believed they might need such coverage should purchase abortion-only policies.
During the final days of the just-completed session, he was one of the conservative legislators who ignored pleas from Gov. Sam Brownback and refused to vote for a tax increase to balance the state budget, enduring long votes that kept him up into the early-morning hours on successive days.
Despite what some might think, DeGraaf said his conservatism doesn’t mean he is insensitive to the circumstances some Kansans face to make ends meet or deal with other challenges. He said his Parkinson’s diagnosis has reinforced his belief that people can largely control their lives by the choices they make.
“It’s easy to move into depression, discouragement and despondency. But those again for a lot of us are choices,” he said, quickly adding that he recognizes there are exceptions.
In his case, DeGraaf said, he’s chosen to confront his affliction, work through the grief and loss, and move on the best that he can.
“There is a time to hug each other and mourn the visions and dreams and things on your bucket list that may not be doable. But there are hundreds of other things that are,” he said. “Yes, there is grief. But then you begin to move through that grief and through that pain and realize, ‘You know what, there is life after diagnosis.’”
And if voters of the 82nd House District are willing, DeGraaf said, he’s made the choice to continue serving for as long as he is able.
Despite differences that have created wide, perhaps historic divisions in the Legislature, DeGraaf said colleagues of all political philosophies have reached out to support him upon learning of his diagnosis.
That support and the relationships he is starting to form with other Parkinson’s sufferers have contributed to his determination to continue to serve in the Legislature.
“We’re not afraid of death, but at the same time we’re afraid of dying daily by not living life fully,” he said. “It’s not fun embracing the long-term picture and not easy looking at the way many people with Parkinson’s have to struggle. And yet at the same time we recognize there is still life to be lived.”
Jim McLean is executive editor of KHI News Service in Topeka, a partner in the Heartland Health Monitor team.
