Couple making every day count since Huntington’s diagnosis

One of John Thomas’ hobbies is taking care of the many fish tanks in his living room. He was diagnosed with Huntington’s disease in 2007.

In 2007, John and Mary Beth Thomas got news that changed their lives forever: John had Huntington’s disease.

Huntington’s is a degenerative brain disorder with no known cure. It affects muscle coordination, leading to involuntary movements that were once called Huntington’s chorea, from the Greek word for “dance.” It also leads to cognitive decline, including forgetfulness and difficulty expressing oneself, and to psychiatric problems like anger. The symptoms worsen over time.

For several years before his diagnosis, John, now 66, knew something was amiss.

“I was actually driving for a living, and I was having trouble with what I thought was restless legs,” he said. “We got to the point where we were going to neurologists and I was commenting about Huntington’s because I knew it was in the family.”

His uncontrollable leg movements were signs of Huntington’s, but doctors did not think he had it because neither of his parents had been diagnosed with it. But, when he tested positive, the Thomases realized John’s mother must have died before showing symptoms. Three of her sisters did show signs of Huntington’s.

Huntington’s is genetic. If a person has it, each of that person’s children has a 50 percent chance of having it. If the person’s child does not have it, the child will not pass it on. If the person’s child does have it, each of his or her children has a 50 percent chance of having it.

John and Mary Beth raised five children, David Thomas, 41, Lora Jones, 39, Stephanie Thompson, 36, Chris Howard, 34, and Megan Foglesong, 31. David and Lora, their two biological children, are at risk for Huntington’s but have elected not to be tested yet.

“We just hope and pray our kids don’t have it because every generation has a 50-50 chance,” Mary Beth said.

Changing lives

In 2010, Mary Beth took an early retirement package from her job as a fourth-grade teacher at Lakeview Elementary to spend more time with her husband.

“I hated to leave my class,” she said. “I felt like I abandoned them, but at some point your family has to come first.”

Since then, Mary Beth found a way to continue her passion for teaching: she tutors five children after school and on Saturdays. She meets with them at the Drake Public Library.

She said the tutoring came about when the family of a former student, Lawson Bettis, called and asked if she had any time to tutor. Soon, two other families inquired. Mary Beth said she had considered substitute teaching, but this works better because she doesn’t have to be away from home for long periods.

“I really missed the kids, and this is the best part of teaching really because it’s one on one and you can make a lot of progress,” she said.

The youngest student Mary Beth is working with is third-grader Broedy Kroeger.

“He’s the hardest-working little guy,” she said. “His mom just wanted me to work with him and keep him going, because he’s made such good strides.”

She is also working with three students from one family, sixth-grader Steven Chen and fifth-grade twins Meagan and Leana Chen. Their parents, who moved here from China, own Jing Jing Chinese Restaurant.

“Their parents really want the kids to have the best education so their lives are better than theirs had been,” Mary Beth said. “The kids are delightful to work with; they have a keen eye for learning.”

Mary Beth added that she enjoys working with Lawson.

“She’s got a kind heart to her,” Mary Beth said. “She’d rather read all day long, and I understand that, because I used to sit with a book in front of my textbook.”

Lawson said she is getting better grades since the tutoring started.

“She’s like me,” Lawson said. “She loves horses, and we talk about horses a lot.”

Growing awareness

Huntington’s is a rare disease, but John said he thinks people are hearing about it more often since 1993 when the gene that causes it was identified and testing became possible.

Before that, he said, large numbers of people were diagnosed with mental illnesses or alcoholism when their symptoms were caused by Huntington’s.

“If God gave it to me, God will let me handle it,” John said. “There’s been times when there’s depression. Actually, one of the symptoms is depression, so I don’t know if the depression is because I’m feeling sorry for myself or if it is the actual symptom of the Huntington’s. But I seem to be able to deal with the depression and just take it a day at a time.”

For now, John’s symptoms are light compared to those of many Huntington’s patients.

“The biggest change is I deal with anxiety more than I used to,” John said. “It wasn’t in my vocabulary until I got Huntington’s.”

But one change is that John is more withdrawn.

“He used to be the center of attention and he’s not anymore,” Mary Beth said. She added that his relatives knew him as the joke-teller. Now, he lets his wife do most of the talking.

After the diagnosis, John’s psychiatrist in Iowa City suggested the Thomases seize the day. At first, Mary Beth said, she thought that meant they would do a lot of traveling and check things off a list while they still could.

But because John quickly became uncomfortable spending a lot of time in public, she decided it meant being more mindful of the time they have together.

“Life is good for us,” she said. “I’m so thankful that I’m home for him, even if we sit at home and watch the fish and read.”

The fish became John’s hobby after Mary Beth decided to get a pet for her classroom but discovered she was allergic to guinea pigs. John bought an aquarium for her classroom and enjoyed taking care of it, so he bought another — and then a few more. The tanks now ring half the Thomases’ living room.

Mary Beth said they have both grown from this experience.

“He used to say, ‘Why me?’” Mary Beth said. “And now he says, ‘Why not me?’ and that’s a tremendous switch. … I’m a little prejudiced, but I think he’s the best person in the whole wide world.”

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