An ALS Caregiver’s Story: Husband’s Legacy Lives On at GR Clinic

Julie Bitely

| 4 min read

ALS diagnosis
Before his ALS diagnosis, John “JJ” Bouma was a “perfectly healthy guy.”
“He was probably one of the healthiest guys you’ve ever seen,” said Pam Bouma-Miller, his widow. “It was something that took us all by great surprise.”
The businessman was diagnosed in September 2005 at the age of 53. He died three days before Christmas in 2006. He was 54 years old.
“His progression was very aggressive,” Bouma-Miller said.
Before he died, JJ Bouma and he and his wife’s friends organized a drive across the country on Route 66 as a way to raise money and awareness for amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig’s disease. JJ Bouma picked out a red Corvette convertible with a goal to raise $66,000. The cross-country effort ended up raising more than $350,000, which was used as seed money to start what is now the ALS Clinic at Mercy Health’s Hauenstein Center for Neurosciences, home to the only nationally certified ALS program in West Michigan. The center opened in 2007 after JJ Bouma had passed away.
“He knew he wouldn’t see it open,” she said. “I just needed to see it come to fruition for him.”
In the years since his death, Pam Bouma-Miller, who has since remarried, has volunteered at the ALS Clinic, providing support to caregivers grappling with a loved one’s ALS diagnosis. She’s on the steering committee for the inaugural Tour de Rapids, a bike ride happening this Saturday to benefit the clinic. Blue Cross Blue Shield is a sponsor of the ride. Learn more about it here.
ALS is a progressive neurodegenerative disease that causes muscle weakness, paralysis, and ultimately, respiratory failure. Most patients only have two to five years to live after a diagnosis and treatment options for the disease are limited.
Pam Bouma-Miller and JJ Bouma were married in 1994. They each brought a son and daughter to the marriage and life as a blended family proceeded smoothly, Bouma-Miller said. The first sign of Bouma’s ALS was a persistent cough in his throat that he couldn’t clear. He then developed twitching in his arms.
“It took us a good six months to get the diagnosis,” Bouma-Miller said.
Eventually he completely lost the ability to use his hands and arms and the last eight weeks of his life he was wheelchair bound because his legs were giving out. Bouma opted not to prolong his life through the use of a ventilator system.
“He did not want us as a family to go through that when ultimately, he knew it was going to take his life and he was a Christian and he knew where he was going, so therefore he didn’t necessarily want to delay that,” Bouma-Miller said.
The family took JJ Bouma to the University of Michigan for treatment during his ALS battle. Bouma-Miller said the couple and other families affected by ALS banded together to support a center in West Michigan so families wouldn’t have to make the trek to Ann Arbor or Chicago for treatment.
One “soul brother” that JJ Bouma developed during his ALS journey was noted minister Ed Dobson. The Boumas had attended the church where Dobson was the pastor. The weekend Dobson retired from the ministry, JJ Bouma received his diagnosis. Dobson officiated at Bouma’s funeral.
Bouma-Miller said she and Lorna Dobson and other caregivers have a kinship with one another. Although she recently stepped away from volunteering at the clinic as a caregiver support provider, she knows what families are going through.
“I could put my arms around those family members and never have to say a word and they would just lean into me knowing I understood,” she said.
There’s not much hope with an ALS diagnosis, Bouma-Miller said.
“Ultimately, the family is watching their loved one decline and nothing is stopping that,” she explained.
Still, she’s thankful for her years with Bouma and “humbled and proud to have been his wife.” The part he played in making an ALS Center possible in West Michigan was his legacy, she said.
Support caregivers and ALS patients at this Saturday’s inaugural Mercy Health Tour de Rapids. Even if you’re not ready to ride, everyone’s invited to a planned celebration from 10 a.m. to 2 p.m. at Saint Mary’s Foundation offices, on 307 Jefferson Ave., Grand Rapids, where you’ll be able to cheer participants on.
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