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From hospice in Duluth, Range senator vows end to Lou Gehrig’s disease

State Sen. David Tomassoni knows his days are drawing down, yet he'll support and return for a special session if it's called.

Sen. David Tomassoni uses an Eyegaze communication device to answer a question in his room at the Solvay Hospice House
State Sen. David Tomassoni uses an Eyegaze communication device to answer a question in his room at the Solvay Hospice House in Duluth on Tuesday. Tomassoni is living with Lou Gehrig’s disease, and he's no longer able to communicate verbally or walk.
Jed Carlson / Superior Telegram
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DULUTH — It’s been just over a year since Iron Range Sen. David Tomassoni announced last summer he’d been diagnosed with the fatal Lou Gehrig’s disease.

He’s still fighting.

“It’s my goal in life to hopefully put an end to this horrendous disease,” Tomassoni, 69, said of ALS, or the neurodegenerative disease amyotrophic lateral sclerosis.

Tomassoni spoke from a comfortable chair in his place at Solvay Hospice House in Duluth.

The Chisholm native and lawmaker announced his retirement from the Legislature in February, due to take place Jan. 3.

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Sen. David Tomassoni listens to a question during an interview in his room at the Solvay Hospice House
Sen. David Tomassoni listens to a question during an interview in his room at the Solvay Hospice House in Duluth on Tuesday. Tomassoni is battling Lou Gehrig's disease.
Jed Carlson / Superior Telegram

In March, Tomassoni helped spearhead a bill into law that targeted $25 million at ALS research and caregiving resources.

Now, tucked into the woods, with potted flowers outside his room, Tomassoni watched televised coverage of the congressional hearings investigating the Jan. 6, 2021, attack on the U.S. Capitol. It was a relief from endless game shows, he said.

“Being here is very difficult,” the 69-year-old lawmaker said. “But I get good care, so that helps.”

Tomassoni is ending his 30-year career as an independent, a fact that seems to matter less now than it did when it happened. He gets many different visitors.

A cousin ducked out when the News Tribune arrived Tuesday for 40 minutes that started with Tomassoni explaining how he uses technology to communicate.

Sen. David Tomassoni works to complete his answer on the Eyegaze communication device
Sen. David Tomassoni works to complete his answer on the Eyegaze communication device during an interview in his room at the Solvay Hospice House in Duluth on Tuesday.
Jed Carlson / Superior Telegram

“This is an Eyegaze computer,” he said. “So, I look at the letters and numbers and then click on them.”

Tomassoni has no ability to move any longer. He can nod "yes" and "no," he said, and uses a feeding tube. Throughout the interview, his big hands didn’t move. And while he’s tall in his chair, and his feet fill leather slippers, it’s evident he’s lost posture.

He selects letters and phrases with his eyes, and confirms them with a foot pedal to form sentences, responses and keep general conversation. He asks for patience while he responds.

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The slippered foot of Sen. David Tomassoni taps a button connected to his Eyegaze communication device during an interview
The slippered foot of Sen. David Tomassoni taps a button connected to his Eyegaze communication device during an interview in his room at the Solvay Hospice House in Duluth on Tuesday.
Jed Carlson / Superior Telegram

“But people like to ask two questions at a time, so answering them is difficult,” Tomassoni said.

Last August, Tomassoni recorded his voice, so once he’s ready to say something, the automated voice elicits Tomassoni’s thoughts using his captured voice.

“Trump incited the riot,” Tomassoni said, about his reaction to live coverage of the hearings. “I tweeted during the riot that this has to stop now or be stopped."

The topic shifted to St. Paul, where the state Legislature adjourned in May with work on the table, including billions in tax cuts, project spending and program funding.

“I want the special session very badly,” Tomassoni said. “The bills that were agreed to were as significant as ever and it would be a shame if we didn’t go back and pass them. And yes, I will be a part of it.”

Tomassoni tries to remain active. He recently appeared at an open house celebrating the 50th anniversary of the United States Hockey Hall of Fame Museum in Eveleth, where Tomassoni remains a board member.

“He sent us a resignation and we rejected it,” said the hall’s executive director, Doug Palazzari. “He came to the open house and stayed a while. He thoroughly enjoyed it. His attitude is so good.” 

Starting its 50th season since opening in 1973, the United States Hockey Hall of Fame Museum remains treasured by the Iron Range town that built it.

It’s something repeated whenever Tomassoni’s name is raised these days. Members of local county boards take note of it. His fellow lawmakers and friends have celebrated it. 

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Asked about his public and courageous confrontation with the disease, Tomassoni said: “I don’t know any other way to do things, so sitting back and doing nothing isn’t an option for me.”

He said he wouldn’t be able to do it without his kids being there every step of the way. A son, Dante Tomassoni, 40, helped arrange the interview, and said his father enjoys company. Tomassoni himself joked about not minding pop-in guests.

The television in Sen. David Tomassoni’s room is tuned into the Capitol riots hearing
The television in Sen. David Tomassoni’s room is tuned into the Capitol riots hearing as he answers questions during an interview in his room at the Solvay Hospice House in Duluth on Tuesday.
Jed Carlson / Superior Telegram

“It’s fine because I’m not going anywhere,” he said.

Some topics proved difficult, and made him tearful.

“This is a really tough disease on families,” he said, before addressing vulnerability. “Part of it is emotional because ALS takes over emotional control so it’s very easy to lose control."

On the topic of his constituents: "Thanks for supporting me all these years," Tomassoni said. "It’s been an honor to serve the best constituents anyone could ask for."

Sen. David Tomassoni gets emotional as he answers a question about what he wanted to say to the people of the Iron Range
Sen. David Tomassoni gets emotional as he answers a question about what he wanted to say to the people of the Iron Range as he uses an Eyegaze communication device at the Solvay Hospice House in Duluth on Tuesday.
Jed Carlson / Superior Telegram

Surrounded by family pictures and mementos of a past in hockey and lawmaking, Tomassoni responded to a question about living a rich life.

"It is day to day for me,” he said. “And I hope that I have made life a little better for people.”

A book titled “Celebrate! Senator David Tomassoni and his tireless efforts to raise money to fight ALS” sits on a table near Tomassoni in his room
A book titled “Celebrate! Senator David Tomassoni and his tireless efforts to raise money to fight ALS” sits on a table near Tomassoni in his room at the Solvay Hospice House in Duluth on Tuesday.
Jed Carlson / Superior Telegram

Brady Slater is a former reporter for the Duluth News Tribune.
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