Today Is a Gift

Optimism and quality care help Ed Payne fully enjoy his life with Parkinson's disease

Ed PayneEd Payne is too stubborn, he says, to yield to Parkinson's disease, a progressive neurological disease. Diagnosed in 2004, Ed first came to The University of Kansas Health System for neurological care in 2009. He had recently moved to the Kansas City area from Albuquerque, New Mexico.

Determined to overcome his disease, Ed has participated in five clinical trials conducted by Rajesh Pahwa, MD, Director of The University of Kansas Health System's Movement Disorder Center. He's also undergone two surgeries, which – combined with the day-to-day care of neurologist Richard Dubinsky, MD – returned to him some of the motor functions he had lost.

"Dr. Dubinsky has helped me understand the medications I take and how they translate to symptoms, which can be similar to the way I feel when a drug is wearing off and when I've had too much," Ed said. He also added that he appreciates Dr. Dubinsky's responsiveness.

"I can send him an email or text with a question, and he responds personally. That accessibility is important to me," Ed said. According to Dr. Dubinsky, the key to caring for patients like Ed is to look at how the disease affects their life and their abilities, and to tailor their treatment accordingly.

"By working with him directly and maintaining regular contact, I'm able to adjust the dose of his medications to try to optimize the treatment while minimizing the side effects," Dr. Dubinsky explained. "We are here to take care of our patients, and communication is an important part of that."

When Dr. Dubinsky receives messages from Ed, he's able to pull up Ed's electronic health record and determine the next steps. That record is accessible to all physicians at The University of Kansas Health System who collaborate on behalf of Ed, including the surgeons Ed says changed his life for the better.

Stained glass by Ed PayneThree years ago, he had so much pain in his feet and legs that he couldn't stand or walk. Dr. Pahwa referred him to orthopedic surgeon Sean Jackson, MD, who removed a bone spur that was impinging on a nerve.

"It took away the pain in my legs and feet completely," Ed said, but his care didn't stop there. Within a year, another orthopedic surgeon at the hospital, Greg Horton, MD, had an innovative idea for correcting the dystonia in Ed's foot. Dystonia is a neurological movement disorder in which involuntary muscle contractions cause repetitive movements and discomfort.

Today, Ed is walking comfortably again, and he says the two surgeries improved his quality of life "incredibly." He has returned to his hobbies as a stained glass artist, woodworker and honey collector. And he remains as optimistic as ever.

"I think it was Eleanor Roosevelt who said, 'Yesterday is history, tomorrow is a mystery, and today is a gift.' When things are difficult, I remind myself of that," Ed said, knowing he can count on his team of physicians at The University of Kansas Health System to help keep him on his toes.

"As a large academic medical center, the advantage we have is that we can provide most everything for our patients in an integrated system," said Dr. Dubinsky. "For our patients, that translates to an elevated quality of care."