Community Interview: Luke Bolt

Luke Bolt was 13 years old when he got diagnosed with myotonic dystrophy type 1 (DM1), which subsequently led to his father, Steve, and a few other family members, including his aunt to also being diagnosed. However, this new challenge didn’t stop the Bolt Family from pursuing their passions as athletes. Learn more about the early years of Luke’s DM journey

Seven years later in 2020, Luke received a pacemaker as his 20th birthday gift. He is a senior at George Fox University in Portland, Oregan, which has been an “adventure” since it is his first time being away from home in Seattle, Washington. “We are very grateful for his care in Portland,” said Luke’s mom Jodie Bolt, MD. “He has had some worrisome changes on his cardiac rhythms as those living with DM1 are prone to.” 

Luke obtains medical support for his cardiac issues from the Madigan Army Hospital. “As parents, we are very relieved that Luke has the pacemaker in now, which makes us less worried about all the long pauses in heart beats, especially at night,” Jodie shared. 

Life with the pacemaker is great, according to Luke, particularly because he is not forced to take breaks from his exercises, which he is extremely fond of. Their annual 206-mile Seattle to Portland bike ride was a great success, where the pacemaker ensured Luke’s energy levels stayed reasonable.  

“It’s a giant project on any given day so I am very proud of him for taking the challenge and finishing it in one day,” said Jodie, who accompanied Luke on the 11.5-hour ride. Luke’s father was their road support this year, rocking the Myotonic Dystrophy In Motion jersey! 

Luke and Jodie also love participating in duathlons, which is a combination of running-biking-running. The mother-son duo find joy in doing such activities together. They participated in a number of duathlons in the summer of 2021. “Our motto has been ‘keep weak muscles as strong as possible!’” shared Jodie. 

A few techniques and exercises taught by his speech therapist also came in handy during the 2022 bike ride. “I don’t swallow really well, which is irritating at times," Luke said. The dysphagia gives him special trouble aspirating liquids, because of which water breaks while riding a bike became difficult. Especially while riding, he has to ensure he doesn’t drink too much water and too quickly. 

Luke has participated in some swallowing studies to help in chewing and swallowing certain textures. His speech therapist has shown him exercises for the face and tongue to help with these swallowing issues. “To swallow, I stick my chin down, almost to my chest, so I am not looking ahead and my throat is opened up as much as possible,” Luke said.  

But this means he cannot keep his eyes on the road when he is biking! “Sometimes it is difficult to see things in front of you until you are on top of them, especially because I don’t see very well in general either,” Luke said.  

Even before he got diagnosed with DM1, Luke was aware that some of his sounds and pronunciations were different from other people’s. The muscles in his tongue and face wear out easily and his voice quiets down, which makes it all the more difficult for him to be understood by others. During the early months of the pandemic, the masks complicated this problem further. This also gives him an issue in class at times because having to repeat things seven times is “frustrating at times,” as he puts it. 

Sleep apnea is another challenge Luke faces in his everyday life. Along with some sleep studies, it has been helped by oral appliance, which is an easier alternative for his college years when compared with the CPAP. He also takes medications for wakefulness to make life relative easier because “caffeine only helps so much,” according to Luke. 

College is quite a different experience for Luke than his peers because while his friends hang out till late at night, Luke finds himself in bed at 9:30 p.m. due to his fatigue. Moreover, not being able to lift his arm over his shoulder because of cardiac complications, makes having to go to regular classes and getting homework done, a tiring adventure. 

Luke is pursuing a major in Kinesiology, which aligns with a lot of Luke's interests, such as running and biking. His childhood was filled with a busy athletic life as he was involved in a lot of sports such as basketball, baseball, soccer, and even bowling, for which he competed in bowling leagues a few summers and even went to state championships for a couple of years. Although Luke has to pass on a lot of opportunities with his friends, knowing his limits lets him focus his energy on the few that bring him the most joy.  

One of Luke’s latest adventures was a 3-week cultural immersion trip abroad with a couple of his professors and peers, which was a fun experience being outdoors. “Even though I was apprehensive of whether I would be able to keep up throughout the expedition, I am very happy with the decision I made because I absolutely love being in nature,” Luke said. 

Myotonia makes it difficult for Luke to do a lot of the stuff quickly. Despite being better in the summer months, it does make college life tough. “I would highly encourage other college students living with myotonic dystrophy to take advantage of the Disabilities office and other accommodations,” Jodie said. Luke has received support such as extended time on exams, the option of typing instead of having to write notes, and also help from peers with class notes.  

Luke recently won a 4-year scholarship through the Young Heros Awards, a program where people can nominate college-aged youth who experience unprecedented life challenges. With the scholarship, Luke is considering the idea of graduate school to pursue a higher degree in Dietetics and Nutrition. He is currently shadowing an expert dietician in multi-care to learn more about the field that he is passionate about. Visit the Nutrition Guide for Individuals with Myotonic Dystrophy to learn from expert nutritionists about diet and DM, managing constipation, managing swallowing problems, feeding tubes etc. 

In addition to being an active runner and biker, Luke is also a member of Young Life, an international faith-based organization for youth, focused on supporting college students to find hope and faith in their everyday lives. He has been involved with Young Life for over three years now and thoroughly enjoys getting to meet like-minded people. 

Luke is also a member of the following MDF programs: 

Movement Committee 

Healthier Living Discussion Group 

Juvenile-Onset Adult Warriors 

• And the inspiration behind Myotonic Dystrophy In Motion! 

“My attitude toward a lot of things in life is, I am going to enjoy it while I can and I will deal with its challenges as they arise,” Luke said. 

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