‘I took my life back’
Jim Ehnen had cast his last fishing line. He had shot his last arrow as a hunter.
Like the fish that got away, these activities slipped from dream to memory, as Parkinson’s disease took a toll on his body.
Or so he thought.
Now, Ehnen again is casting his fishing line into the lake with his grandkids beside him. And he has plans to return to the woods this fall with his oldest grandson. He just bought his deer hunting license online.
“I took my life back,” he says.
Ehnen credits his turnaround to the comprehensive multidisciplinary Parkinson’s disease clinic at Spectrum Health.
And so does his wife, Diana. Not long ago, she despaired as she watched her husband’s strength, energy and balance fade. And now she marvels at the pace he sets.
“I laugh because he walks faster than me,” she says.
Former Major League Baseball player and manager Kirk Gibson will be the keynote speaker during a free community event to boost awareness of Parkinson’s disease. Gibson, a former Detroit Tiger who was diagnosed with Parkinson’s three years, will discuss his determination to overcome it and the adversities he faces.
What: Team Up to Beat Parkinson’s Disease
Where: DeVos Performance Hall
When: 5-7 p.m. Tuesday, May 23
To register: The event is free but preregistration is required. For information or to register, click here.
Ehnen, a 65-year-old former electronics technician from Muskegon, Michigan, learned two years ago that he had Parkinson’s, a chronic and progressive movement disorder. By the time of his diagnosis, he already walked with a cane.
“I wouldn’t fall down steps―I would fall up steps,” he says. “I wasn’t doing enough movement to get my foot past the step. I would hit my toe and fall.”
His family, which includes two adult sons and five grandchildren, remember feeling distressed as they watched the decline in his abilities.
His speech became soft and muffled. He had a hard time swallowing pills. He had tremors in his left hand. His thought processes deteriorated.
“I was an avid hunter and fisherman,” he says. “And I just gave up even trying to go into the woods because I knew I was going to fall. And as far as tying anything on a fishing line―that was pretty much useless for me to try that.”
Diana noticed his expression became almost frozen. His eyes, which once looked at her with love, now appeared vacant.
“It was devastating,” she says. “I would watch him get up in the morning. He would be stiff and hardly able to walk. He would climb into his chair and fall asleep for four or five hours.”
They sought help from a local physical therapist. Through the therapist, they connected with R. Ross Coleman, MD, a Spectrum Health neurologist who specializes in movement disorders.
And that opened the door to the multidisciplinary clinic, which brings a group of specialists together to help patients with Parkinson’s.
Before we got out of there, we had hope. I think the whole way home we talked about it.
“The reason behind the clinic is that Parkinson’s is complex,” Dr. Coleman says. “There are the movement symptoms that most people are aware of. That would include things like motor stiffness, tremors, slowness and problems with balance. And there also are non-motor symptoms, including things like depression, anxiety and problems with sleep.
“Because of the complexity of Parkinson’s, it really requires a team approach in order to adequately treat it and address all these issues.”
Patients attending the clinic at the Integrated Care Campus at East Beltline spend about four hours meeting with a team of providers: physical, speech and occupational therapists, a social worker and a pharmacist, as well as the neurologist.
The team works to make the experience as convenient as possible for patients. A nurse navigator coordinates the clinic visits so the patients can see all the specialists in the same place on the same day. The patients stay in one room and the specialists come to them.
The approach also gives the care providers a chance to meet as a team, face to face, to plan treatments. Because people experience Parkinson’s symptoms differently, each patient needs an individualized treatment plan, Dr. Coleman says.
Although there is no cure for Parkinson’s, treatments can improve symptoms and quality of life.
Jim and Diana Ehnen learned tips and exercises to improve speech, swallowing, fine motor movements, walking and cognitive abilities. They learned about LSVT Big and Loud programs, tailored to improve movements and speech for Parkinson’s patients.
“Before we got out of there, we had hope,” Diana says. “I think the whole way home we talked about it.”
I know if I put my mind to it now, that I can do what I got to do.
Diana no longer felt helpless. She joined her husband at therapy sessions and helped him practice exercises at home.
“I catch myself swinging my arms and high-stepping, just from practicing with him,” she says.
Now, Ehnen walks without a cane. He has more energy. He treasures the time he spends fishing with the grandkids.
“It means a great deal, just the chance to be out there with them,” he says. “I love to see them catching fish.”
He and his wife attend as many of the grandkids’ sporting events as possible. He surprised himself recently at his grandson Bayly’s track meet. As Bayly ran the 300-meter hurdles, he seemed to lag about 50 yards from the finish line.
“I found myself kind of trotting along the side of the fence, hollering at him to encourage him,” Ehnen says. “A year and a half ago, I would not have been able to do that.”
Exercise is key
“He’s doing well,” Dr. Coleman says.
Ehnen has benefitted from changes in medication to improve his movement and help him sleep. He also gets Botox injections to control drooling, a common concern of Parkinson’s patients.
But much of the credit for his improvements, says Dr. Coleman, lies in his commitment to continuing his therapy exercises at home.
Exercise is key for Parkinson’s patients. It can reduce their fall risk. And those who exercise tend to move better.
For Ehnen, the benefits go beyond an improved range of activities. He also faces challenges with more confidence.
“I’m not as frustrated with the things I was frustrated with before,” he says. “I know if I put my mind to it now, that I can do what I got to do.”
The benefits ripple through the rest of the family, as well.
“It’s just unbelievable,” Diana says. “The faith and trust and hope came back.”