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Preparing, planning, waiting for God

In the fall of 2012, soon after she was diagnosed with ALS, Lori Thorson wanted to have a family photo taken. She’s pictured here with her husband of 17 years, Shawn, and their children, Ian, 13, and Elisabeth, 16, of Alexandria. (Courtesy of Jennifer Guenther Photography)

Lori Thorson of Alexandria has handled with grace what would crush the toughest of the tough. In August 2012, she received one of those health diagnoses that sucks the oxygen right out of the room.

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Thorson was diagnosed with amyotrophic lateral sclerosis (ALS), a progressive, fatal, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS is also known as Lou Gehrig’s disease.

“The life expectancy [for an ALS diagnosis] is only two to five years… How do you prepare your children to live without you? I’m calculating how old they’ll be… what I have time to teach them… what I have time to get them through before I leave…,” she said.

Knowing her time left on earth is limited, Thorson is leaning hard on God, and He has bestowed her with abundant grace.

“My faith is very important to me. My faith and my children are what get me out of bed every day. I think that at some point, every person given a terrible diagnosis wonders, ‘Why?’ I have no good answer, but I do trust that God loves me and that is what I hold on to,” she said.


It all started in February of 2012 when Lori noticed weakness in her hands and grip. After six months of testing, poking, imaging, guessing and fear of the unknown, a doctor did nerve conductivity testing.

“Because of my age and because I’m female, the doctor was reluctant to do it. I asked him to please do it and after he did the study, his face had fallen and he looked scared and upset and I knew it wasn’t good,” she said.

ALS is most common in men in their late 50s or 60s. Lori’s bilateral case, symptoms affecting both sides of the body, is considered rare.

Her pulmonary function and respiratory capacity have diminished as of late.

“The hard part is that ALS is so variable, you don’t know the rate at which things will progress. The doctor has been very surprised I can still write legibly, that I can talk and eat.

“I don’t read a lot about ALS. I know what the eventual progression is but I don’t want to have a time frame in my head. I just take things as they come. It’s a gradual progression and we adjust as it presents itself,” she said.

In January of 2013, Lori, 39, was also diagnosed with Lyme disease, which can have similar symptoms as ALS.

“We have been aggressively treating the Lyme since, but to no apparent avail,” she said. She ended treatment for Lyme disease last month.


Lori and her husband, Shawn, have been married 17 years.

“Shawn is so strong,” she said. “I’m very grateful about how he handles things. I think that the hard part is that we always felt like if we had each other we could make it through anything and I feel bad for him. I’ll have him to help me through, but who will he have?”

As Lori wiped away tears, Shawn added, “’s almost unreal to have to go through this stuff. Sometimes you get caught up going through the day-by-day stuff and it doesn’t necessarily sink in and once in a while it catches you. It’s just really difficult and trying to think of everything… if it does come around… everything that’s going to change and how much it’s going to affect everybody. You don’t know the toll it’s going to have, but you try to do what you can to prepare.”

The Thorsons have two children, Elisabeth, 16, and Ian, 13, and Lori said they’re handling it as well as can be expected.

“They seem to be very strong, very resilient, in a way I never wanted them to have to be. I am proud of the people they are,” Lori said.

“My daughter is much more apt to think of things she wants to know or things she wants me to pass along, experiences, things she wants us to do together, and my son isn’t quite matured to that point. He can’t look to the future as much so he’s really great about coming in and plopping in bed with me when I’m resting and visiting with me there.

“I don’t want them to have to go through life without me. They’re really good kids. They’re kind and open-hearted. I think they’ll be just fine, but I would love to see them grow up.”


The Thorsons said they have an army of friends, family and co-workers helping them with everything from laundry to grocery shopping.

“It’s humbling to see the kindness and generosity of so many people. It’s so incredible to see the face of God through all these kindnesses.”

Lori particularly enjoys the daily lunch dates with co-workers. She was the chemistry supervisor at Douglas County Hospital, where she worked 17 years before she left last September.

“I worked as long as I could. I really loved my job and my co-workers, so that was probably one of the most difficult things. You know how you identify with your career; that’s who you are. That was really hard to give up.”

Shawn said of his wife, “She’s always upbeat and positive going through this, very strong and it’s kind of unreal to see the way that people have responded to her and the amount of people that just come and help...”

Lori said, “As funny as it may seem and despite all the difficulties, I still have a really good life. The outpouring of love and kindness just shows me how much we’re blessed and I really feel that I have been blessed.”

Friends and family have organized a benefit for the Thorson family on Saturday, March 29 from 5 to 9 p.m. at St. Mary’s School in Alexandria. Money raised will be used to buy Lori a wheelchair accessible vehicle and defray medical costs. The evening will include a pulled pork dinner for a free will donation, a silent auction and music.


Lori spends her days now getting up with Shawn. He helps her with grooming and dressing, and when he leaves for work, she goes back to bed where she reads stories of faith, her Bible and uplifting words of others.

“My faith is very important to me. I firmly believe that anything is possible and God still performs miracles,” Lori said. “I try to live expectantly and hopefully, while still accepting whatever may come. It is a difficult balance to strike. So, I prepare and plan while I wait on God.”

She’s also working on a few projects.

“I have paperwork to fill out for things, I’m trying to organize everything for my funeral, trying to get a binder together with insurance that will have to be transferred when the time comes. I’m trying to write things down for my kids…”

Shawn said, “I try not to think about that too much. We just try to get through the day.”

Lori agreed: “We just focus on the day ahead of us. You know they say worry doesn’t rob tomorrow of its troubles, it robs today of its strengths. That’s one thing I try to focus on. I just try to do as much as I can with the day I’m given.

“I am stronger in my weakness than I ever thought I could be.  And I didn't know if I would be able to come to terms with my limitations. It's still difficult at times, but I think that God's grace has allowed me to be more graceful than I thought I could be.”

Amy Chaffins

Amy Chaffins is a journalist working for the Echo Press newspaper in Alexandria, Minnesota.

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