Duluth, Minn. – It’s been more than a year since Iron Range Sen. David Tomasoni announced last summer that he had been diagnosed with the deadly Lou Gehrig’s disease.
He’s still fighting.
“It is my goal in life to eliminate this dreadful disease,” said 69-year-old Tomasoni, about ALS, or the neurodegenerative disease amyotrophic lateral sclerosis.
Tomasoni spoke from a comfortable chair at his place at the Solvay Hospice House in Duluth.
The Chisholm native and legislator announced his retirement from the Legislature in February, which was due on January 3, 2023.
In March, Tomasoni helped lead a bill into law aiming $25 million on ALS research and caregiver resources.
Now, nestled in the woods outside his room with potted flowers, Tomasoni watches television coverage of a congressional hearing investigating the January 6, 2021 attack on the US Capitol. It was a relief from endless game shows, he said.
He said, ‘It is very difficult to live here. “But I get good care, which helps.”
Tomasoni is ending his 30-year career as a freelancer, a fact that matters less now than it did when it happened. He gets many different visitors.
A cousin freaked out when the Duluth News Tribune arrived on Tuesday for 40 Minutes, which began with Tomasoni talking about how he uses technology to communicate.
“It’s an Eyegaze computer,” he said. “So, I look at letters and numbers and then click on them.”
Tomasoni no longer has the ability to move. He can nod “yes” and “no,” she said, and uses a feeding tube. His big hands did not move during the entire interview. And when he’s tall in his chair, and his feet are covered in leather slippers, it’s clear he’s lost his posture.
He selects letters and phrases with his own eyes, and verifies them with a foot pedal to form sentences, responses, and carry on general conversation. He asks for patience when he answers.
“But people like to ask two questions at a time, so it’s difficult to answer them,” Tomasoni said.
Last August, Tomassoni recorded his voice, so once he’s ready to say something, the automated voice gets Tomassoni’s thoughts using his captured voice.
“Trump sparked a riot,” Tomasoni said of his reaction to the live coverage of the hearing. “I tweeted during the riots that it has to stop now or it has to stop.”
The topic shifted to St. Paul, where the state legislature adjourned in May with work on the table, including tax cuts, project spending and billions in program funding.
“I want the special season so badly,” Tomasoni said. “The bills that were agreed upon were as important as ever and it would be a shame if we don’t go back and pass them. And yes, I will be a part of it.”
Tomasoni tries to stay active. He recently appeared at an open house celebrating the 50th anniversary of the US Hockey Hall of Fame museum in Eveleth, where Tomsoni remains a board member.
“They sent us a resignation letter and we rejected it,” Hall’s executive director Doug Palazzari said. “He came to the open house and stayed for a while. He thoroughly enjoyed it. His attitude is great.”
These days whenever Tommasoni’s name is taken, this point is repeated. Local county board members take note of this. His fellow MPs and friends have celebrated it.
When asked about his public and courageous confrontation with the disease, Tomassoni said: “I don’t know any other way of doing things, so sitting back and doing nothing is not an option for me.”
He said that he would not have been able to do this without his children being there at every step. A 40-year-old son, Dante Tomassoni, helped arrange the interview, and says his father enjoys company. Tomasoni himself joked about not taking the pop-in guests into account.
“It’s okay because I’m not going anywhere,” he said.
Some subjects proved difficult, and made them tearful.
“It’s a really hard disease on families,” he said before addressing the vulnerability. “Part of it is emotional because ALS takes away emotional control, so it’s very easy to lose control.”
On the subject of his constituents: “Thank you for supporting me all these years,” Tomasoni said. “Serving the best components is an honor one could ask for.”
Surrounded by family portraits and mementos from the past in hockey and lawmaking, Tomasoni answers a question about how to live a prosperous life.
“It’s day to day for me,” he said. “And I hope I’ve made life a little bit better for people.”