Mike and Dean Sage approach life differently than many people their age.
"A lot of my friends and colleagues are working really hard to have something, do something or be something in the future," says Dean. "Being diagnosed with myotonic dystrophy has made me look at life with a different perspective. The uncertainty of my physical future puts an emphasis on doing things now as opposed to later."
A long journey to diagnosis
Dean, 33, and his older brother Mike, 35, were diagnosed with DM in 2009 after dealing with a range of symptoms since high school. Mike's sleepiness and apathy were misdiagnosed as depression, while Dean was told his muscle cramps would improve with more potassium.
"I tried multiple antidepressants and talked to psychologists for years, trying to improve my 'depression,' but nothing worked. I was still tired and apathetic all the time. Excessive daytime sleepiness (EDS) has been a problem my whole life," says Mike. "My junior year in high school I was supposed to be getting ready for college, but I was not interested; I felt totally indifferent."
"Our symptoms were treated in isolation," remembers Dean, who was treated for reflux, swallowing problems and gallstones before diagnosis. "As an undergrad at UCLA, I started falling asleep in class, but figured that was normal. It was not a life-altering challenge. It was something I was adapting to over time, and I never connected the dots."
Dean completed his bachelor's degree, a master's program in entrepreneurship in New Zealand and then law school at the University of Michigan. "As time progressed, I began to think I had no discipline and couldn't figure out why I couldn't wake up in the morning like my classmates. I would make study dates and ask my friends to call me to make sure I was awake, not telling them that i had already set four to six different alarms."
While Dean was pursuing education, Mike served as a paratrooper in the 82nd Airborne Division of the US Army. While he excelled at most tasks, he occasionally struggled with some of the physical demands. "I had no problems with push ups or sit ups, but I could never really match up on our runs, regardless of how much I trained," Mike recalls. He also relied on his comrades and squad leaders to wake him up in the morning. "I might have stayed in the service longer if [EDS] had not been such a problem. Especially with the elite unit I was in, sleepiness was unacceptable."
The brothers acknowledge that while they may look alike, they are very different people. They never suspected a connection regarding their symptoms, but when Mike noticed that Dean was having trouble releasing a door handle, the two began to compare their experiences.
Searching for an explanation
"When I got out of the military in 2002, I decided I was going to get to the bottom of our hand cramping problems," said Mike.
In 2009, Dean finished law school and returned home to San Diego. Both men began to see doctors, searching for answers. They had two different medical teams working to identify the problem behind what they now saw as their related symptoms. Mike's doctor sent him to occupational therapists and eventually a neurologist who mentioned the possibility of DM.
"When we first heard about myotonic dystrophy, my mom and Dean started researching it online. I was in denial," said Mike. "We found disease information on the internet and all the symptoms fit," said Dean. "There wasn't much doubt at that point."
Electromyography (EMG) and DNA testing confirmed the diagnosis. The brothers then learned that their father was a carrier whose fatigue and diabetes were never recognized as DM. Their younger sister, Jenny, is unaffected.
Living in the moment
Today, each of the brothers sees a cardiologist, a neurologist and a gastroenterologist on a regular basis. Having to keep a close eye on their health inspires both Mike and Dean to pursue the things that are most important to them, which include family, sports and travel.
Mike, Dean and Jenny play on a co-ed indoor soccer team every Thursday night. "I love playing soccer and it's often the highlight of my week, but I do worry about how long I'll be able to keep it up," says Dean, whose symptoms are primarily physical.
Dean, who works as a tax and entertainment attorney in San Diego, travels as often as possible. "I don't know how rapidly things are going to degenerate or progress. I don't know if I'll be up for climbing Machu Picchu in six years, for example, so it's one of the things I want to do now." Passionate about travel, Dean has visited ten different countries in Europe and Asia since his diagnosis.
"I try to stay active, but it's tough," agrees Mike, who splits his time between Los Angeles and San Diego. "I don't know how much longer I will be able to go snowboarding or play golf, so I do it as much as I can now."
The silver lining: community and connection
Mike and Dean offer the same advice to newly diagnosed people and their families: "Get involved in the DM community. It helps to have someone who knows exactly what you are going through." The brothers have built a network of friends by attending the MDF conferences and events, and Dean stays connected to the DM community through email and social media.
"It's a big deal that I don't have to do this alone," says Mike. Dean agrees: "We talk and joke about stuff other people could never understand. While our family is totally supportive, only Mike and I know what it's like dealing with this on a day-to-day basis. Myotonic dystrophy has brought us closer together." The brothers are optimistic about the future, but for now they focus on living in the moment.