Family, a best friend and a podcast help Don Millner navigate his life with Huntington's disease
Don Millner's Huntington's disease diagnosis comes with memory, cognition and coordination issues. He works through his symptoms to spend time with family and create a podcast with his best friend.
AUSTIN, Minn. — As Don Millner set up his microphone next to his laptop, he shared the big difference he and his best friend, Jordan Wermager, have when it comes to watching movies.
"I could find some really, really awful movies," Millner said with a smile. "Jordan likes to say, 'Why do you do it? You don't have to do it. There's so many good ones.' ... I do because I've seen something so bad, there can't be anything that bad."
Since 2007, the two have been watching and talking about movies — good and bad — together.
"I was a manager at Hollywood Video," Millner said. "Talked to a lot of people — you recommend movies, you talk to everybody. Jordan and I just started hitting it off."
Over time, Millner and Wermager found out that they had other shared interests, such as softball, and they were roommates for a year and a half before Wermager relocated to Fargo, North Dakota.
Though Millner and Wermager have had near-daily conversations since Wermager moved away, it wasn't until October 2021 when they decided to share their thoughts on movies with others through a podcast.
"We listen to a lot of podcasts," Millner said. "We share, 'Hey, I listen to this,' he listens to that. So we just said, you know, why don't we do it? We like to talk about movies. So, we started looking into it and kind of went from there."
The two record I Scene It regularly over a Discord video call — Millner connects from his dining room in Austin, while Wermager joins in from his home in Fargo. Millner edits and uploads each episode. They're nearly 50 episodes in.
Making the podcast is a point of connection and focus for Millner, 39, who is diagnosed with Huntington's disease, an inherited condition that impacts Millner's memory, cognition and coordination.
"It's like having ALS, dementia and Parkinson's all at the same time," he said.
Millner's friendship with Wermager and his love of movies has been a through line in his life alongside his family history of Huntington's disease.
Road to diagnosis
According to the National Institutes of Health, Huntington's disease is caused by a mutation on chromosome 4 . It can be diagnosed through genetic testing, and children with a parent who has Huntington's have a 50% chance of inheriting the condition. Millner said his maternal grandmother died due to complications from Huntington's disease in 1995.
"My mother had this big fear she was going to be the next one to get it," Millner said. "My mom was diagnosed in 2008. She was having a lot of problems at work."
Around the same time, Millner said he began to have problems — his feet and knees would buckle and give out while he was standing at work. It wasn't until after Millner and his wife, Rachel Millner, got married in 2011 when he decided to get tested. Rachel had one son, Mathew, from a previous relationship, and the couple were considering adding to their family.
"Kids were always a conversation. She knew the risks going in," Millner said. "We said, 'You know what? Let's find out.'"
And they did. In July 2012, Millner underwent genetic testing, and his results came back quicker than he anticipated. Don and Rachel met with their doctor at Mayo Clinic, who confirmed that Don had Huntington's disease.
"Rachel and the neurologist, Dr. Nathan Young, cried more than I did — I kind of just stared, just listening," Millner said. "The doctor gave us some time, and I said to Rachel, 'This doesn't change anything that we're talking about.'"
Don and Rachel went on to have Cameron, 9, and Addie, 7. They opted out of genetic testing for their two youngest children.
"You can test in the womb," Millner said. "We said no, we don't want to do that. We've made the choice to live through our children, their energy."
In the 11 years since his diagnosis, Millner's symptoms have progressed. He said he has trouble sleeping, which impacts his energy and motivation.
"Two and a half years ago, I was working full 10-hour days in drive-up at Wells Fargo during the pandemic," Millner said. "But now, it's not so easy to get motivated."
Millner also suffers from headaches and short-term memory issues.
"My short-term memory can really be a bugger," he said. "If I'm doing something, like I'm doing the podcast, something else comes up or I might write something down I might forget. I've had that happen during an ep when we're recording. ... The nice thing is that we can edit out all that stuff."
But the biggest thing Millner is afraid of, he said, is the isolation that can come as the disease progresses. Before his mother's death, Millner saw how his mother's friends gradually stopped visiting her.
"All of these people that you (know) just suddenly vanish, and we've seen a little bit of it," Millner said. "It's kind of sad. It kind of is what it is.
"But I take for granted what I have six hours away," he continued, pointing to Wermager's live video on his computer screen. "He's still like he's right here."
Points of connection
The podcast is just one way Millner and Wermager stay in touch as long-distance friends, and it's contributed to other conversations with new and old friends. Millner and Wermager have had friends join I Scene It as guests and have found podcasting mentors in J. Blake and Dion Baia, creators of the Saturday Night Movie Sleepovers podcast. Wermager added that he and Millner have also found a helpful independent podcast community on Twitter.
"One of my favorite things about the show is when we actually get feedback from somebody saying, 'Hey, I took a chance and watched that movie that you recommended, and it was really good,'" Wermager said. "It's very rewarding."
Millner also finds support and connection on Facebook through a Huntington's disease group with more than 14,000 members.
"There's a lot of people asking questions, just simple stuff," Millner said. "So I answer a little bit. Just helping somebody out, with people saying, 'What's this mean? What do I do in this situation?""
On days where he struggles with his own disease symptoms, Millner said his kids are his motivation.
"I made a pact with Rachel that — I'm not in control of it, but I want to see all three of my kids graduate," Millner said. "So, maybe I'm not feeling it, maybe I don't want to go to a doctor's appointment. But, I've got to get up, and I've got to do this."