Matthew Jensen, who grew up in New London, but now lives in Willmar and works part-time at a business in Spicer, has a debilitating disease that has now put him in a wheelchair.
“It’s called primary lateral sclerosis (PLS), and it has to do with the nerves in my brain that run muscles. The insulation around them is dying off.” When his brain sends a signal for his legs to move, only like 1/20th of it gets through, he said. The rest of it bleeds off and hits other nerves, so other parts of his body will stiffen up when he’s trying to do something as simple as lift his arm.
Matthew Jensen, of Willmar, was diagnosed with primary lateral sclerosis, a rare, debilitating disease. He continues to work and stay positive despite the challenges of the disease. Photo by Bev Alhquist
It takes about 20 years to go from beginning to end. “The last thing I’ll lose will be my ability to speak, so any muscles, anything to do with thought, all those are affected, but your organs are fine.” That’s an anatomic nervous system that’s automatic, he said. “Your breathing, your heart, all the other organs, none of those are affected. It’s very rare; it’s a very unresearched field.” He is working with the ALS Foundation so they can take his records, study them and try to find a cure for it so others can be helped.
It all started about eight years ago with something in his left foot called clonus.
“My leg will twitch every so often, then it slowly works its way up from the ground up.” It took about four years to diagnose it because there is no diagnosis of just the disease. “They’ve got to wait and find out what it isn’t, and the last one was ALS, and they did a test and said it is not ALS, it’s definitely PLS. Now I’m in a wheelchair. My arms are fine, but in the next 10 to 12 years, my arms will be about 20 percent of their normal strength, and the ability to speak will be gone.” When that happens, he said, he’ll speak with a box where he types in what he wants to say, and it will speak for him.
“I think the good Lord has put me into a challenge, a test. The plus side of that is it’s gotten me a lot closer with Him, and I’m very sympathetic with other people with the same thing, so I do the best I can to reach out to them.” Also, Jensen said, he keeps working whenever he can. “As long as I can, I’ll keep working. I’m down to about two to three hours a day working in a small engine shop, and I’ve got a garage at my apartment where I tinker in.” Eventually, he said, all that will come to a stop, too. He’ll always be able to drive but only with all the controls he needs in the van.
The county has supplied a woman that comes in once a week to clean. “Besides that, I even have gotten down to shampooing my own rugs, but it takes about 10 times longer.” As for his food, pretty much everything he eats is microwavable. “But I am being set up with a new wheelchair that will stand, so I can actually reach the top cupboards and work around the stove. Then the wheelchair will bring me back down.”
He still drives but with hand controls. “Eventually, I’m sure it will be down to a toggle switch driving system, but for right now, I keep on getting around. That’s one thing. You can’t give up and you can’t just lay there because it will just make it that much worse.”
Jensen said he seldom sits still. In the winter time he has a work bench in his bedroom where he tinkers and works on old shotguns, other things he can fix, and some wood carving.
After that he’s out mowing lawn. “I got an old zero turn mower from my boss, and I mow lawns for a couple guys to help out. I put a plow on it in the winter, made one fit with electric controls, so I can go out and plow snow in the winter and still remain active.”
He said this mower will also allow him to go back on the trails in the woods, the ones that have decent trails so he can watch his sons and grandsons go hunting and take pictures of them. That’s a blessing, he said.
“And I just found out a few days ago I’ll be getting a front wheel drive, so it will go up and over small stuff. If I hit the switch, it will stand me up. There will be a bar across the front of my chest and in front of my knees so they don’t buckle. Then I can reach things, take pictures standing up and watch the boys hunt.” One of the best things is he can get it in a camouflage color so he can blend right into the woods. “It’s another one of those things I’ve been blessed with.”
The final project will be making a wheelchair with tracks on it, he said. “I’m going to build my own so I can go way back in the woods and go back in where I used to go where I can’t go anymore now. I do miss being out in the country and doing whatever I want to do.”
He said his walk with God has gotten stronger, and he’s really enjoying that. “When I’m at church, people see you happy and joyful instead of sad and that helps pick them up, too. But I’m truly blessed with three sons and nine grandkids and family that loves me. I’m glad I’m here and can get around and do things.”
Jensen said when he was at the University of Minnesota with their top neurologist, where he goes once a year, they found out it wasn’t ALS he has. The test for that, he said, was not enjoyable at all. The people that were there were great, he said, noting one of them was a woman from France who was with the International ALS Society. “She asked if they could use my past, present and future records to advance their study for ALS and PLS, and I said ‘absolutely.’”
Jensen said he had never heard a French accent before, but he really enjoyed hearing her talk. “I told her, ‘ma’am, I’ll sign anything you want if you just keep on talking.’” He told her all he ever hears around home is ‘ya sure, you bet ya’ and ‘don’t you know.’ “When she left she said ‘Take care Mr. Jensen, ya, sure, you bet.’ That’s what she said.”
They’re a good bunch of people, he said, and it’s a worthwhile investment if you want to donate money to anything. “The ALS Society is one of those where they don’t know what to do anymore. It’s taken some of my family and friends, so if they can learn from me I definitely want them to use it.”
He said it’s one thing to lose the use of his legs, but thank goodness his arms are okay.
“I do everything with my arms. I cook, I work, I pick myself up, I make my meals. And if they go down to what some people have of only 10 percent of their arms left, I’ll have to give all that up and that would be the hardest thing because with my wheelchair and my arms…”
Jensen said he loves to work. “We’ve been brought up as workers in our family, and it would just be so difficult, and I’m praying a lot all the time that the Lord will spare my arms at least, keep my arms working.” He added, “It’s hard to hold the grandkids when your arms aren’t strong.”
Jensen said he’s not depressed at all. He’s been fighting depression for well over 30 years, and now there is no depression because of his illness and that’s a blessing because of the depression he already has.
He said they have noninvasive machines today. “You can sit and watch TV, and the machine heals your depression.” He said he has to do that every two months because the disease is slowing down what the treatment does. “It’s a TMS machine (transcranial magnet stimulator), and is like a little MRI machine. Pulses go through the brain with magnetism, and they literally heal the nerves.” He said many people who have had it done have been able to throw their medication away and lead normal, healthy lives again with good mental health.
Jensen said people think he should be depressed about his illness. “I see so many other people that are in more of a bad way than I am, and I feel fortunate to only have this.”
Through his story, Jensen is hoping to reach out to others and show them you can lead a normal life instead of just sitting and looking out the window.