Living with ALS: Local man creating album for musicians with the disease
By SHERYL DEVORE - firstname.lastname@example.org
A grand piano takes center stage in a room at Jim and Kathy Stupar’s Hawthorn Woods home. Two years ago, Jim would be playing some tunes he wrote using his favorite chord progressions, or he would be writing a song for a special family occasion.
Now that Jim has ALS, also known as Lou Gehrig’s disease, he no longer can play the piano, nor can he write down the music he hears in his head. His disease, however, has not stopped the music in the Stupars’ home.
The couple, who grew up in Crystal Lake and attended Crystal Lake High School, are working with Jim’s cousin, Bryan Harris, to create an album comprised of music created by those who have been diagnosed with ALS. They are calling it the ALS Musicians Collaborative Album and will release it on iTunes. Proceeds will go to the Les Turner ALS Foundation.
Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease, afflicts about 35,000 Americans. It typically leads to death within two to five years as the body loses its ability to speak, walk, swallow and breathe. Researchers have been unable to find a cause, or a cure – just treatments that can prolong life and ease symptoms.
Jim, 55, and his cousin hope the album will be released early next year. The album will be linked to Jim’s website, www.doesthemusichavetostop.org. The website also aims to raise money for research of the disease – and as Jim said, “to glorify God.”
Without his music, faith and a positive attitude, Jim said, he likely wouldn’t get out of bed in the morning.
Jim, who once traveled extensively for his job at Hollister Inc., now stays at home being cared for by his wife, although he continues to contribute to Hollister, he said.
Today, he is having trouble breathing and cannot move his hands or walk, but he still can talk about his music and tell jokes, calling himself a sack of potatoes as he gets lifted out of his wheelchair.
In August 2012, Jim began having signs – little signs – that something was wrong. He was losing weight, and his grasp felt weak. Doctors told him to eat more. But the symptoms got worse. He found he was unable to carry a 15-pound briefcase while in Germany on a business trip.
Although Jim and Kathy suspected he had ALS, it wasn’t confirmed by the Mayo Clinic until March. About three months earlier, Jim had played a song on the piano he wrote for his granddaughter, Sofie’s baptism.
That day, Kathy thought to herself, “Will the music stop?”
Today, she believes that will not happen.
“Though Jim can’t actually play the music anymore, so much of what he wrote and played will be heard for the first time – by more than just one or two family members,” Kathy said.
Their son, Ben Stupar, 33, is helping Jim go through old cassettes that contain snippets of songs Jim has written and performed. Ben is digitizing the music, and a few are already up on the website. Several will go on the album his cousin is helping him create.
Kathy said the disease has brought Jim and their son closer.
“Ben comes every other weekend with his family (wife, Anne, and daughter, Sofie) to help archive the music. Jim traveled so much before. It has become an opportunity to bond more with his son,” Kathy said.
Jim also has a CD he and his friend Tom DeCicco created in 1998, and some of that music also may be included in the album.
Recently, a musician from Batavia who has ALS found Jim’s website and said he was interested in adding his music to the collection.
“He shared his story – how devastated he was by not being able to play anymore,” Jim said.
Jim also met Dan Navarro from the country folk group Lowen and Navarro and discovered David Eric Lowen contracted ALS in 2004 and died in 2012. The duo is known for their song “We Belong,” made famous by Pat Benatar.
“Navarro has offered to let us use a few of their songs on the album,” Jim said.
While Jim talked, Kathy stood close to him, touching his arm and smiling. It hasn’t been easy, she said.
“Emotionally it’s been very difficult,” she said. “Jim’s progress is faster than we anticipated. We have to rely on our faith to get us through this.”
Special technology helps Jim work on his website. He sends emails by using a device that translates his speech.
“It’s incredible,” he said. “My total range of movement is 50 yards, but I can go anywhere with the Internet.”
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