CHISHOLM, Minn. — Longtime state Sen. David Tomassoni of Chisholm, Minn., announced July 17 that he has Lou Gehrig's disease, also called amyotrophic lateral sclerosis or ALS.
Receiving a life-changing medical diagnosis can leave a person feeling uncertain of what the future holds.
"There is no sugar coating it — this is a tough disease, and I will feel the effects of it in my speech, my movement and my life," he wrote in a letter to constituents published in the Mesabi Tribune.
Tomassoni, a DFLer who is now serving as an independent, said he has been feeling strange symptoms since December 2020 but was formally diagnosed in June.
Tomassoni spoke with MPR News Thursday, July 22, about how he’s navigating life with an incurable disease. The following is a transcription of the interview, lightly edited for clarity.
David Tomassoni: This is the strangest darn disease you're ever want to be associated with. I first probably noticed that as much as a year ago, a couple of things happened with my left hand, and I would drop things. Like I'd have a toothpick in my hand or something, and I’d drop it. Then a couple of other things happen.
I guess the crowning moment was, I have this 20-pound dumbbell, and doing 10 repetitions of it, was never ever a problem. And all of a sudden, it got to a point where I could only do four, and then my left arm, I couldn’t lift it at all. Finally, on June 2, I got an EMG, and the doctor said ‘Yes, it’s ALS.’
So I guess that brings us to today. I feel good. I'm exercising and eating healthy. And I probably should tell you, I actually went to Mexico for stem cell therapy at the end of June. We'll see how it works.
Q: ALS is a very tough disease. And it kind of un-knits the muscles of a body, leaving them useless. And there's no cure. How are you mentally preparing for living with ALS? And I underscore that living word because I know so many people who are living as fully as possible with ALS.
DT: I’m getting so much positive feedback from people. It’s just, it’s really nice that people are actually reaching out from different parts of the country. I’ve had outreach from people who have had ALS in the family …
Give me a minute. I didn’t expect this to be this hard.
Q: It’s a very tough, tough situation, senator.
DT: Yeah, but this part sucks. You know, I shouldn't have to be … there is a medication for those emotional things. So I'm … I don't feel like I should be emotional. And all of a sudden, it just happens.
But the outreach has been tremendous, Cathy. And one of the things that I’ve been doing, I went through physical therapy. Boy, exercising really helps. I just feel really good when I get done. For the most part, my legs are really good. I’m moving around just fine. My ability to do things has changed, and I'm feeling really good about how I feel right now.
Q: Glad to hear that. Will you continue your legislative work?
DT: I am in the process of trying to figure out how this will affect me. And as far as the Legislature goes, I'm participating in all the meetings that I was supposed to participate in. I got until December 2022 on this term, and I'm waiting to see what redistricting looks like before I decided if I'm going to run again or not.
If we slow down the progression or stop the progression, I'm in a position right now where I feel like I can be very effective in the Legislature into the future.
Q: And as an advocate for those living with ALS?
DT: I hope to be front and center on that.