By Lindsay Snider
Murphy News Service
The house smells of butternut squash soup and warm bread on a cold winter evening. From the kitchen bay window one sees snow falling lightly over the vast golf course. Inside, the house is immaculately decorated with abstract paintings, table centerpieces and family photos, and antique chandeliers gently shining on the maple colored hardwood floors give the house a certain glow. Inside this pristine home, one might picture a fairytale about a perfect family.
Brad Molstad, 59, and Mary Japs, 56, moved into their Hudson, Wisconsin, home four years ago. They have two sons, Aaron, 25, a Ph.D. student at the University of Minnesota, and Nathan, 22, a finance and accounting major at Marquette University, who will graduate in May. Brad and Mary have been married 28 years and say they continue to care and love one another as if they had just tied the knot.
But with a closer look at this home, at this family, the story one would expect is slightly off. Because around this house one would also find a number of tall chairs, a hospital bed and a toilet lift. One would notice a wheelchair in the garage, that never gets used, and a cane propped up next to a man sitting in one of those tall chairs at the dining room table enjoying the warm butternut squash soup.
That man would be Brad, who was diagnosed with Inclusion Body Myositis (IBM) five years ago, a disease that medical professionals still know next to nothing about. Brad’s physical appearance may look weak, with drooping eyelids, limp hands and a slanted posture. But as his strong, curious personality and clever, infectious, sense of humor surface, one finds that the disease has a fight on its hands.
About Brad
Brad grew up in Glen Lake, Minnesota, a community wedged between Hopkins and Minnetonka, attending Hopkins High School. He graduated with a theater arts degree from the University of Minnesota.
Along the way Brad worked odd jobs, including dressing up as Papa Bear in the renowned children’s story, Goldilocks, for a traveling theater. “I always joke that the guy who did it before me didn’t want to get back in that suit for the summer,” he said. “It got a little warm.”
Brad found his way to an information technology job with The Saint Paul Companies Inc. (now The Travelers Co.) through musician friends who claimed computer science work was a great way to get paid and was not that hard.
Brad spent 30 years climbing his way to vice president of information technology before his disease forced him to retire in 2012.
Since retirement Brad has revisited his love for volunteering with Adult Basic Education, an organization devoted to helping students to prepare for the GED and adults with disabilities to practice reading and math skills. Brad also likes to read, listen to music and collect paintings from local artists. Mary enjoys participating in various community groups, such as a golf, recipe and book clubs.
Brad and Mary, also a former employee of Travelers, married in 1986 and started a family in Stillwater. There they raised bright, active sons, Aaron and Nathan. When Aaron went off to college and Nathan was in his last year of high school Brad and Mary moved to a home in Hudson, in which Brad could avoid stairs and get around easier.
In the past few years Brad and Mary’s familial roles have changed dramatically. Brad now endearingly calls Mary his caregiver because she helps him perform acts of everyday living that most people take for granted. Brad jokes that Mary helps him so often that they are on a “P, T basis,” their acronym for “Please” and “Thank you.”
Tough diagnosis
The first time Brad noticed his body getting significantly weaker was in 2009, during the NCAA Men’s Basketball Final Four Tournament in Detroit, Michigan. Brad and Nate scored aisle seats in Ford Field while they watched the tourney’s four remaining teams compete. But instead of remembering details of the game, Brad recalls the physical pain of having to constantly stand up and down as other fans moved past him through the aisle.
Mary saw Brad getting weaker even before the Final Four trip. Brad would come home from work and talk about getting to meetings early so he could find the tallest chair in the room. He would also worry about frequent flights to Hartford, Connecticut, to maintain his customer relationships.
“It got to a point where I had to travel quite a bit,” he said. “But I couldn’t travel on my own.”
Both realized something was wrong with Brad’s health and began to seek a medical opinion. They soon realized finding out what was happening to Brad’s body would be a fight in and of itself.
Brad visited numerous doctors, underwent multiple tests and sought many second opinions. No doctors could determine what was happening to Brad’s body. He remembered regularly visiting neurologists in the Twin Cities and submitting to outrageously expensive blood tests, one costing about $5,000.
Still, no diagnosis.
It was not until late 2009 at the Mayo Clinic when Dr. Eric Sorenson diagnosed Brad with IBM. Sorenson predicted Brad probably had had IBM for five to 10 years based on how weak he had become. Sorenson told them that Brad’s disease usually runs its course over a 20-year span. Beyond that, Sorenson added that little else is known about Brad’s disease or, much less, a cure for it.
Brad nonetheless visits the doctor about once a year, mostly for insurance purposes, or if other health problems come up. Mary put it rather bluntly when she explained it as, “Diagnose and adios.”
Inclusion Body Myositis
IBM is part of a group of inflammatory muscle diseases that produce chronic, progressive inflammation and weakness. The onset of IBM is generally gradual over many years and can affect most muscles. The disease typically hits males after the age of 50.
IBM has created holes in Brad’s muscle tissue, while his immune system is feverishly eating the muscle, he explained. “For some reason it’s gotten mad at it.”
Brad has lost strength in his core muscles, fingers, arms, quads and throat, and said muscles all over his body continue to deteriorate. Brad has shrunk about 3 inches in height.
“I’m getting weaker every day,” Brad explained. “As I’m losing my muscle I’m kind of becoming skin and bones.”
IBM attacks most of Brad’s muscles, but it does not attack his heart or lungs, which is a primary characteristic of Amyotrophic Lateral Sclerosis (ALS), known to many as Lou Gehrig’s disease. ALS and IBM are similar in the context of degenerative muscle diseases. But the two differ because ALS is more prevalent and severe.
Dr. Sorenson told Brad two years ago that he had lost about 50 percent of the strength an average man his age should have. Brad’s recent Mayo Clinic visit came with good news. Sorenson said Brad’s muscle capabilities have remained about the same, which means they are not getting worse. Still, Brad said he notices that he feels more tired than in the past.
Brad does not let his strength obstacles stand in the way of physical activity. He walks about a half a mile five to six times weekly around the YMCA track. Sorenson advised Brad, “Use it or lose it, but don’t over do it.” But Brad said he is also aware that at some point he will become totally disabled, that is if doctors or scientists cannot find a beneficial treatment or cure.
Always, a hope for treatment
Brad has tried countless treatments, ranging from alternative and traditional medicine, and he regularly applies for clinical trials he believes could help the disease.
He visited a naturopathic doctor for two years shortly after diagnosis. Brad remembered taking mud baths on a regular basis and having to remove his mercury tooth fillings because they supposedly were toxic and interfered with his health. He stopped naturopathic treatment after a painful sensation in his side, which his naturopathic doctor claimed was from parasites sent by the full moon three nights earlier. Mary thought naturopathy was a waste of money and Brad saw no improvement.
He saw slight improvement through acupuncture treatments, which helped ease muscle pain by allowing his “chi,” a Chinese word similar to energy, to flow properly through his body. But he eventually discontinued acupuncture and remembered feeling like a pincushion.
Brad also visited a chiropractor whose quirky ideas about United States food production convinced Brad to change his diet. Brad said the chiropractor believed the country purposefully poisons people through foods high in sugar, for population control. Brad remembered drinking a special cherry drink imported from Michigan and at some point decided to move on to other treatments.
Since his diagnosis Brad has applied for various clinical trials and experiments. About two years ago he signed up for a gene therapy study in Columbus, Ohio, and said he is No. 9 on a list of 12 participants. He waits. No call-back yet.
He applied for a study through Novartis, the international pharmaceutical company, that he says is working on a cure for IBM. But Brad most likely will not be considered because the evaluation process, which would require frequent travel, is too far away from their home in Hudson, Wisconsin.
Clinical trials and experiments sound encouraging, he said, but the lengthy application and procedural processes are long and discouraging.
Mary worries most clinical trials are just looking to make a buck. But at the same time she understands that they might be the only hope of finding a cure or treatment for IBM.
Brad and Mary are planning a trip this month to Boca Raton, Florida, for an experimental stem cell treatment, priced at about $9,000. While that sounds expensive, Brad insisted it was the cheapest study of its kind that he could find that he believes might actually work.
The Food and Drug Administration has not approved the stem cell treatment. The experimental treatment takes one visit and, unlike many stem cell treatments, does not involve developing or growing the cells in a culture.
Brad explained that the stem cells would, in theory, go to muscles that need help the most. But that can be problematic if he has undetected precancerous tumors. Then the stem cells will be attracted to the tumor, making it much worse, he said.
Brad and Mary see this as a calculated risk. Brad said he has nothing to lose and wants to do everything he can to slow the progression of IBM.
“If I can slow down the progression then maybe a new drug will show up that can cure the disease,” he said. “But if I keep losing muscle as much as I am even the drugs won’t do anything.”
Mary believes the treatment could be worth it, especially if it prevents another fall, which can be catastrophic for people with deteriorated muscles. Brad has tumbled three times, one causing a concussion, another causing a compression fracture in his vertebrae. Since the fracture, Brad cannot stand up completely straight.
“Ever since that fall I’ve felt like I got a little worse, and I get tired out much faster,” Brad said.”
Mary said the trip to Florida is a BIG deal, not only because of the preparation needed for flying and staying in a hotel, but also because Brad has not undergone any treatments for about three years.
Brad takes no medication, other than occasional over-the-counter pain pills. But he feels his muscles getting weaker every day. Most of his daily activities, such as getting up from a chair, cooking a meal and getting dressed, require help from Mary.
A positive outlook
Brad is not the only one affected by IBM. He and Mary agree that the disease has attacked both of them. Mary does not have the same type of physical decay, but, she said, she has had to adopt a sense of inner strength for their family.
Mary remembers the day of Brad’s diagnosis and said it was harder on her than it seemed to be for him. She described Brad as a pragmatic person, someone who will not sit and dwell about his illness. Mary said she is more of a dweller. She said she also worries about how Brad’s disease will affect their sons. Doctors told Brad they do not think his case of IBM is genetic. But Mary thinks it might be in some way.
Brad said the full impact of the disease has not hit him quite yet. He said he does not focus on how his muscles might be in the future compared to how they are now.
“Some days I am depressed and some days I’m like, this doesn’t have me, I’m not going to let this do this to me,” he said. “I want to keep fighting it.”
He went through a period of determining if he had this disease or the disease had him. “You can get really philosophical about this stuff. I’ve kind of gone through a lot of that,” he said.
Choosing the former, Brad refuses to let IBM define him.
“Physically it is what it is. I’m immune to it,” he said. “So I can choose to be whatever I choose to be.”
Reporter Lindsay Snider is studying journalism at the University of Minnesota.