ARLINGTON — Doctors have been scratching their heads looking to help an Arlington man live a better life with an incurable, debilitating disease, but in the meantime, the patient’s friends and family are putting their hearts and hands to work to help with practical matters.
A Weston Strong fundraiser will be held on Sept. 14 at the Arlington Community Event Center for Roger Weston, who is afflicted with Graves disease, an autoimmune disease, which has caused a buildup of mucus-like substance in his hands, legs, feet and behind his eyes. The overactivity of Roger’s thyroid gland leads to excessive release of thyroid hormones, causing his hands and feet to grow in a painful, immobilizing way.
Spearheaded by his daughters, Erin, Oakley and Laine, the event will kick off with a car cruise, which will start at 1 p.m. (line up starts at 11 a.m.) and in the afternoon, organizers will host a meal at 4 p.m., with a live auction at 5 p.m.
The goal is to help offset some of the expenses Roger and his wife, Judy, have incurred in the long process of diagnosing and curbing the effects of the disease.
Judy said her husband had suffered in silence for a long time, so there is a certain relief that comes with making his story public, as it raises awareness about the disease and its impact on Roger’s daily life.
Insurance does not cover the treatments doctors have attempted so far, which include eye surgery to drain the buildup of musom, an infusion, steroid injections, and radiation, among others.
For a guy who grew up knowing how to stand on his own two feet and overcome hardships, living with a disease that robs him of mobility and dignity and does so in a progressive
way has been tough for Roger.
The only boy in a home of six sisters, (he is a twin with sister Rose), Roger was not pampered and learned the value of hard work early on.
He graduated from Starmont High School in 1979, and on July 30, 1983, married his high school sweetheart, Judy Weber.
Their courtship was not really a surprise for those who knew them well because they had a lot in common. They grew up in the same area, went to the same school, and as fate would have it, they learned about loss at an early age.
Judy lost her mom, Della, at the age of 6, and Roger lost his dad, Dale, when he was just 7 years old.
The wedding vows at Arlington’s United Methodist Church, Roger’s home church, set the stage for the young couple’s life together.
Roger, who was a shy guy by all accounts, had proposed to Judy, two years his junior, during her senior year in high school over a family Christmas.
“He had wrapped the ring in a big box,” Judy recalled. “It was a surprise for everybody. I said yes, and I cried and life goes on.”
Life did go on for the newlyweds. They raised three daughters, and have two grandsons and a third one on the way.
It wasn’t until Roger’s health problems began about 10 years ago that they encountered one of their biggest challenges.
As the disease progressed, they found there is no cure for it. Roger’s condition had gone undiagnosed locally for a while until the Westons finally went to the Mayo Clinic.
Living with it, however, has become a daily ordeal, especially for a Starmont Star like Roger, who played on the football team in high school and remained active in life.
Roger’s feet, which measured at size 10, are now size 16. The painful growth on his soles and on the top of his feet is aggravated by the fact that he works in a warehouse, where he drives a forklift, and often has to lift 50-pound bags.
His request for disability was denied, so he has to keep working, but no one really knows how much longer he can take it.
At one point, when he had a radiation treatment on his feet, his skin peeled off deeply, making it was impossible for him to stand.
Adding insult to injury, the medical bills keep piling up.
“It is very stressful, with the medical bills, you have to decide if you have to pay a medical bill or make your house or your car payment,” Judy said.
Both Judy and Roger were raised with a mindset that they handle their own problems themselves and work to pay their own bills, but now Roger’s condition has brought them to a place where they have decided to share their situation with the community.
How they have been dealing with the unknown has been telling.
For the most part, both are focused on finding the best outcome and are stoic in their pursuit.
Later this month, a team of doctors at the Minnesota State Dermatological Society will gather as a team to seek answers.
Specialists at Mayo had told the family that Roger’s condition is extremely rare, hence the puzzle on how to find a medical way to relieve his suffering is an ongoing one.
From time to time, Judy’s frustration understandably boils over, especially when she is overcome by a sense of helplessness as she watches Roger’s suffering.
“I have my days, I break down, I get angry,” she said. “He has sharp pain, his feet are damaged, he is mentally exhausted. But he is still working, a lot of people would have given up by now and he is not giving up.”
Roger, too, has those unbearable days when he is questioning everything.
At times, he tells Judy, that if someone were to offer him to amputate his legs, he would say yes.
In the darkest of times, however, he has found some relief in his grassroots humor, which comes in handy when everything else fails.
Asked where he finds the strength to look for humor, he quips:
“In the Cracker Jack Box!”
The agility of this comeback shows that he’s a fighter and in his struggle to put mind over matter, he has found his uplifting outlook and his sense of humor much more powerful in keeping him going than any medication.
Through his wife — he is hard of hearing — he said what gives him hope is his family and friends.
Judy, a bus driver and worker at the middle and high school kitchens at Starmont, said the benefit is a new territory for the family.
“It’s a little hard to accept when you are taught to stand on your own two feet,” she said. “We are very appreciative of the support we have gotten from friends and family, and people we don’t even know.”