From hospice in Duluth, Iron Range senator vows end to Lou Gehrig鈥檚 disease

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鈥檚 disease, and he's no longer able to communicate verbally or walk.

By Brady Slater

July 14, 2022 at 4:27 PM

DULUTH 鈥� It鈥檚 been just over a year since Iron Range Sen. David Tomassoni announced last summer he鈥檇 been diagnosed with the fatal Lou Gehrig鈥檚 disease.

He鈥檚 still fighting.

鈥淚t鈥檚 my goal in life to hopefully put an end to this horrendous disease,鈥� 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.

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.

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.

鈥淏eing here is very difficult,鈥� the 69-year-old lawmaker said. 鈥淏ut I get good care, so that helps.鈥�

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 during an interview in his room at the Solvay Hospice House in Duluth on Tuesday.

鈥淭his is an Eyegaze computer,鈥� he said. 鈥淪o, I look at the letters and numbers and then click on them.鈥�

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鈥檛 move. And while he鈥檚 tall in his chair, and his feet fill leather slippers, it鈥檚 evident he鈥檚 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.

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.

鈥淏ut people like to ask two questions at a time, so answering them is difficult,鈥� Tomassoni said.

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

鈥淭rump incited the riot,鈥� Tomassoni said, about his reaction to live coverage of the hearings. 鈥淚 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.

What鈥檚 going on in Washington is outrageous, unlawful, dangerous and needs to stop or be stopped.
— David Tomassoni (@Ranuccio11)

鈥淚 want the special session very badly,鈥� Tomassoni said. 鈥淭he bills that were agreed to were as significant as ever and it would be a shame if we didn鈥檛 go back and pass them. And yes, I will be a part of it.鈥�

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.

鈥淗e sent us a resignation and we rejected it,鈥� said the hall鈥檚 executive director, Doug Palazzari. 鈥淗e came to the open house and stayed a while. He thoroughly enjoyed it. His attitude is so good.鈥�

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

Asked about his public and courageous confrontation with the disease, Tomassoni said: 鈥淚 don鈥檛 know any other way to do things, so sitting back and doing nothing isn鈥檛 an option for me.鈥�

He said he wouldn鈥檛 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鈥檚 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.

鈥淚t鈥檚 fine because I鈥檓 not going anywhere,鈥� he said.

Some topics proved difficult, and made him tearful.

鈥淭his is a really tough disease on families,鈥� he said, before addressing vulnerability. 鈥淧art of it is emotional because ALS takes over emotional control so it鈥檚 very easy to lose control."

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