Refusing to waste time

Body: 

Life doesn't always go as planned. Bardon "Bo" Setterquist can attest to that.

Setterquist, 57, lived the good life. He loved his job at Nordstrom, playing basketball and walking his golden retriever, Camper.

"I was good at it (picking out shoes)," Setterquist said a bit proudly of his early years at Nordstrom, when he bought women's shoes for the company.

About two years ago while he was living in Boston, Setterquist noticed his left hand and arm were not working the way they should. Soon, it was taking him awhile to get dressed, so he contacted a neurologist.

Setterquist, who wore a suit to work every day, started to have problems with the top button on his shirt. He began to arrive early at work so he could ask the janitors for help with the button.

He had many tests, including an MRI, and cortisone shots in his neck and spine. He visited a chiropractor. He tried deep-tissue massage and acupuncture.

"Nothing worked," Setterquist said.

His neurosurgeon told him it was a normal part of aging and that bone spurs were possibly causing the problems.

Setterquist talked on the phone with his older brother, Terry, about his health issues. He wasn't yet diagnosed. They discussed the symptoms and the possibility of it being amyotrophic lateral sclerosis, more commonly known as "ALS" or "Lou Gehrig's disease."

While still in Boston, Setterquist saw an orthopedic surgeon who could not find anything wrong with him. Setterquist asked what he should do. The surgeon advised him to get a second opinion — fast.

Next, he called to make an appointment at the University of Boston. It was booked until March 2017.

Nordstrom was transferring Setterquist back to California in February, so he set up the appointment with a neurologist at the San Francisco Medical Center.

Setterquist's fears were confirmed within 15 minutes. It was ALS.

The disease is a progressive, incurable disease that affects more than 6,000 Americans annually. It attacks the nervous system and weakens muscles.

"I was somewhat relieved," Setterquist said. "I cried for a week after I found out."

While he loved California, he decided to move back to his hometown of Cloquet, where several of his family members still live.

"I never in a million years thought I would move back here," Setterquist said, adding that it was the best decision for him.

Setterquist comes from a large family with six siblings; three still reside in the area. He is No. 4 and the youngest brother. His parents owned and operated the Public Market Grocery Store on Carlton Avenue in Cloquet.

"I was spoiled," Setterquist said with a chuckle. "My older siblings had to take ballet lessons, but I got to play hockey. I dodged that bullet."

Setterquist moved to Seattle until a room became available in March at the Fond du Lac Assisted Living Building in Cloquet.

Setterquist stays as busy as possible. His siblings visit every week, as do former classmates in the area. He enjoys watching birds, squirrels and other wildlife outside of the window in his room.

"Cloquet was really a great place to grow up," Setterquist said. "It gave me a foundation to be a good person."

He used to enjoy cooking, so he bought a membership to Blue Apron, an online meal kit service. While he lived in Boston, his favorite food to cook was fresh lobster. Now, he enjoys watching cooking shows when he has time.

"It's tough," Setterquist said. "The disease is progressing faster than what I thought it would."

He noted he has no family history of terminal illnesses.

Setterquist has noticed his legs start feeling heavy when he walks. They have even given out a few times recently. When that happens, he needs assistance to help him stand because his arms aren't strong enough anymore.

Setterquist explained that the disease causes enzymes in the body to eat away at muscles. He held out his hand to show an indent between his thumb and pointer finger where the muscle is now gone.

He has been able to continue one of his hobbies: painting. He became intrigued by the artform after seeing interesting work at his in-laws' residence. He likes the style of Jean-Michel Basquiat, a neo-expressionist painter popular in the 1980s.

Last summer, Setterquist learned to paint by holding the brush in his teeth. He has been so busy with visitors, however, he has not had a chance to finish the painting.

Setterquist likes to get out of the assisted living home as often as possible, whether it's sitting outside with visitors, completing errands or shopping at local stores. He expressed surprise at the willingness of total strangers to help him. Recently, when he was waiting for assistance to get his groceries from Walmart store to his car, a young woman saw him and offered her help.

Setterquist got a twinkle in his eye as he told the story.

"She was kind of cute, and I said, all right," Setterquist said, smiling. "She put all of my groceries in my car for me. That was awesome. It was out of the blue. That wouldn't happen in Boston."

Setterquist suffers an occasional meltdown when he worries about what the future has in store for him — a symptom of ALS as it progresses.

He can still talk, breathe on his own and get around at the moment. With his legs starting to randomly give out, Setterquist decided to get fitted for a wheelchair. His new custom chair will lift up and tilt forward to make it easier for him to get up.

He was fitted for a corset style back and neck brace this week to help him hold his posture.

Setterquist saddens when he thinks about the last several years of his life, so he tries not to.

When he starts going down that road, he switches to happier thoughts, such as those about his daughters, ages 19 and 21. They are healthy, happy and doing well in Southern California.

Setterquist is thankful for family and friends. And he still likes to be useful. He encourages his younger sister, Jolene.

"She told me things have been going better since I moved here," Setterquist said with a smile.

He helped an older brother spruce up his office, got him a website and provided business advice.

"Kill them with customer service," Setterquist said. "It (the office) looks a lot nicer now. It's cool, and I'm proud of that."

Setterquist tries to stay optimistic about his future. He was just notified this week that he qualifies for Radicava (Edaravone) — the first new ALS medication in 22 years, that is expected to slow down the progression of the disease by 30 percent. The person needs to be in the beginning stages of the disease in order to qualify for the new medication. Another new medication was introduced in Israel recently.

Setterquist is excited about the new options. He read that the medication in Israel reversed a patient's ALS symptoms. He contacted the company, but has not heard back yet.

"I want to explore every opportunity," Setterquist said.

Setterquist hopes to visit Great Britain before his disease progresses too far.

"I would visit Harrods (a very exclusive department store in London) and see what they have," Setterquist said excitedly. "I love designer stuff."

"I'm just going to keep enjoying life," he added.