Torsten, the father of five, diagnosed with ALS

A doctor thought it might be a pinched nerve and recommended physical therapy. But it didn’t make much of a difference. Maybe even a little worse. That was in January 2021.

It wasn’t until May 2023 that more extensive examinations were done.

“I received a notice but didn’t read it carefully and missed that I was supposed to bring a family member. When I arrived at the hospital, there were two doctors in the room. I didn’t understand at first what it was about, but when the doctor started crying, I realized it was something serious,” says Torsten Gabrielsson.

The ALS diagnosis wasn’t something Torsten had anticipated. It was an abstract concept.

“I knew that Börje Salming had ALS and that he died, but I didn’t want to know more, and it's pretty much the same today. I read the information about ALS on 1177 and listen to what the doctors say, but nothing more. I don’t want to know more about what lies ahead.”

Torsten lives with his wife Tanja and their five children, aged three to 17, in a villa in central Karlstad. He is currently on sick leave from his job as a marketing manager.

His days revolve around getting the kids off to preschool and school, maybe doing something, but mostly resting, and then welcoming the kids home after school.

“I wonder if I could work a little for stimulation, but right now, I don’t have the energy for more than what I’m already doing.”

The ALS diagnosis was confirmed in August 2023, and for the first six months, there were almost no further symptoms. Aside from weakness in his left hand, there were occasional tremors in his left foot when cycling. But it was only afterward that Torsten saw the connection to ALS.

“For the first six months, I lived more or less as usual. I worked, danced, partied, and didn’t notice any significant difference. But in May 2024, more symptoms appeared. Suddenly, I couldn’t walk any longer. If I walked 500 meters, I was completely exhausted.”

Torsten now uses a powered wheelchair for mobility, but indoors he can move around without support.

Torsten is a guitarist in the hard rock band Elden, a band that has been around for thirteen years, has a record deal, and has performed at Sweden Rock.

Although Torsten can no longer play guitar, he still participates in the rehearsal space and is involved in songwriting.

"We're in the process of recording a new album, and it's good to have a project and something to look forward to. But at home, I rarely listen to music. It becomes too emotional for me."

Instead, Torsten spends time in the garden and on growing things. The 1,000-square-meter garden has become his new passion.

"The garden has become my thing after music. In a way, it's a relief to give up music and just focus on the garden."

What do the children say about how the illness has affected you?

"The youngest ask questions and speculate as children do. The middle ones find it more difficult, and our oldest sees and understands everything. It's obviously hard to watch their dad lose his abilities and what that will lead to."

"I really wish it were easier to get help, like being able to take parental leave when I'm too unwell and getting help with simple household chores."

"My illness is progressing, and our house needs to be adapted for the next phase of my condition, but I have neither the time nor the energy for all the applications that need to be submitted."

"I take it one month at a time. Tanja has a longer perspective."