'Living each day as if it's the greatest day ever'

Photo courtesy Marianne Trandall Josh Trandall, front left, sits with his family for their recent Christmas picture. Next to Josh is daughter Abby. His wife Marianne is standing behind him, next to the couple’s son Jackson.

HURON — Josh Trandall wakes each morning, knowing and understanding that today will be much like yesterday, although with the possibility of it being a bit more difficult. Which is notable, as yesterday was tougher than last week. Or last month.

Trandall’s ordeal started last summer.

“I was out taking a walk,” he said via telephone, “like in May or June, I guess? I noticed some tightness in my lower left leg.” He paid attention to the issue, and when the tightness became weakness, he sought medical advice.

This is a good time to mention that during his high school days at Huron High School and college at Northern State, Trandall was a top sprinter, so he paid attention to his aches and pains.

“I went to see Dr. Joe Carr and we worked on some things and he suggested some testing,” Trandall recalled. “By this time, my weakness had developed further and I had muscle twitching as well.”

Josh won both the 200 and 400-meter dashes at the state track meet his senior season at HHS, then took his talents to NSU, where he earned All-American honors for his accomplishments. He was a 12-time conference champion at NSU and is part of teams that hold school records in most of the sprint relays. He is a member of the NSU Hall of Fame and is set to be inducted into the HHS Hall of Fame this fall.

Josh and Marianne met at a track meet. He was teaching at Canton and she was a coach for the college in town. “Mark Wendelgass asked me to come help at a track meet and I think Josh was there to help too,” Marianne said. “I think maybe Josh had a long weekend? That was when we met for the first time — at the Wendelgass Relays.”

The long road in front of him
The preliminary diagnosis after tests came near the end of July. It was Amyotrophic Lateral Sclerosis, often referred to as ‘Lou Gehrig Disease,’ after the New York Yankee great who had his career cut short by the disease.

“That is what was diagnosed, but there really isn’t a test for ALS,” Josh said. “It’s more of a ‘eliminating other things’ and ‘this is what is fitting the symptoms.’ That’s what it was for me.”

More tests were done in Sioux Falls with the same diagnosis.

ALS is a rare neurological disease that primarily affects the nerve cells responsible for controlling voluntary muscle movement, like chewing, walking, and talking. The nerve cells that connect to the muscles break down more quickly, impacting the muscle’s functions. There is no known cause, and sadly, no effective treatment to halt or reverse its progression, although medication and therapy can slow it and reduce discomfort.

The main symptom is muscle weakness.

“The prognosis for most ALS patients is two to five years,” Josh said, “and mine is progressing rather quickly. I have no use of my right leg and my left is very weak. I use a walker to get around and when I go out — which is rare — I use a wheelchair.” He noted that other ALS patients see it impact muscles in the throat area, so swallowing becomes difficult, while others have other muscle groups affected. “Right now, my arms are still strong,” he says, with an audible knock recognizable over the telephone. “I still have my arms working.”

Trandall is thankful that while he is limited in his day-to-day movement, he is still able to work, teaching Spanish to high school students through Northern State University’s virtual learning program.  “It’s good I can do that,” he says, “because I lack the power to do much else.”

He spends most of his time in the basement of the home he shares with his wife Marianne and daughter Abby. The couple’s son Jackson is in college. “The hardest thing that I have ever done was to tell our kids about my diagnosis,” he said.

A benefit for the family will take place Jan. 14, at the Earl Nordby 4-H Exhibit Hall on the S.D. State Fairgrounds, organized by Sarah Rubish and Chris Stahly, friends who teach with Marianne at Huron High School.

“Sarah and Chris got the ball rolling,” Marianne said, “they thought it would be a good idea to have a benefit. At first it was a dinner, then a silent auction was added, then a live auction and now it has really taken off. We are very grateful,” she said. “We have some huge expenses in front of us and the outpouring of help that people have extended is wonderful.”

Plans are for remodeling the main floor of their house to make it more useable for Josh and to make it possible for him to use the upstairs. A wheelchair ramp is in the works and a lift is installed to move him from the basement to the main floor, but improvements are needed to that as well.

The couple married in 1999 and a short time later were on an airplane, headed to the South Pacific for teaching positions. The memory of early teaching engagements is strong for Josh today.

“I was very lucky,” he said. “Marianne and I have traveled quite a bit — living and teaching in other countries and I have done a lot with my life. Of course, I had hope that someday we would continue that, but that’s not a viable option, so I make the best of things that I can.

Looking forward
“This is all very, very frustrating,” Josh said. “There are so many things that you don’t think about — things that you take for granted that you will just be able to do. I know that I am guilty of taking things for granted. For instance, it’s snowing and I would absolutely love to be able to go out and shovel snow, but I just can’t. I yearn to be able to help around the house, but I cannot.”

“What is most difficult is that nothing is going to get better,” an emotional Marianne noted. “The disease is progressing and at times it’s tough to come to grips with that fact.”

While Josh is limited in his participation, all of the day-to-day things to run a household fall to Marianne.

“It’s kind of chaos,” she said. “We do many things to accommodate Josh and things change very rapidly. What worked last week — to move him for instance — doesn’t necessarily work this week. Sometimes it’s a necessity to find another way to do things.”

“My wife is a superstar,” Josh said. “She has always been my support and is an immense help through this whole thing. My family has been awesome as well, helping out.”

The community has stepped up as well, Josh said. “I am absolutely amazed at the generosity and the caring of people in this community,” he said. “Friends, family, co-workers, former co-workers have all reached out and have donated items to the benefit or have donated their time. It is a blessing to see what they have done for us and I am tremendously grateful for all that everyone has done for us.

“I get frustrated, but I am focused on living each day as if it’s the greatest day ever.”

Trandall Benefit - Jan. 14
6 p.m. Nordby Exhibit Hall

A silent auction, a live auction and pork loin dinner are planned, with all proceeds going to Josh and Marianne Trandall as the family faces the expenses of treatment for Josh’s ALS diagnosis and remodeling of their home to make it more comfortable for him.

“My sister has established a GoFundMe page to help out and there is an account at Dakotaland Federal Credit Union,” Josh Trandall said. “The funds raised will help pay for the remodeling of our upstairs to make it more accessible for me.”

Among the items donated for auction are a signed hockey stick procured by his cousin in California who works with the LA Chargers football team and the LA Kings hockey club. Other sports memorabilia is to be available as well.

“I am a Michigan fan and I understand that one of my former students is working on getting a football signed by coach Jim Harbaugh,” Josh added. “My mom is a painter and she is putting some of her artwork on the auction as well.”

There will be a band and dancing as well, and the public is invited and encouraged to attend.

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