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    PERSPECTIVES

    New Hope for Narcolepsy

    How an Inventor Helped His Exhausted Daughter

    Reviewed by Neha Pathak on July 27, 2021

    Video Transcript

    MICHAEL LARSON: I think creativity is at the very heart of what it means to be human, and we are most in touch with our humanity when we are creating. My middle child, Jessica, she was very high achiever, first-chair flutist in a local youth symphony, played the piano beautifully, all A's in school. All of that suddenly changed when it became clear that her sleep during the day was getting uncontrollable for her. I'm Dr. Michael Larson, and I'm a professor by day and an inventor by day and night. And my daughter has narcolepsy. When my daughter finally got a diagnosis of narcolepsy, I had never heard of the disease before. So I began to learn all I could about sleep and how to help people get better sleep.

    Jessica does deal with excessive daytime sleepiness from the body's lack of regulating sleep cycles properly. She also has cataplexy, which is a sudden loss of muscle tone, and typically someone will crumple to the ground.

    JESSICA LARSON: I was exhausted not sleeping well. For a while I didn't know if I was going to be able to go to college the way I had planned originally. You know, there were just a lot of things that I kind of started to wonder if I needed to give up on.

    MICHAEL LARSON: It becomes very hard for someone to advocate for themselves. There are many, many people suffering from narcolepsy. Many of those people are not getting any help, so I took it upon myself to turn to technology to see if we can't develop a solution that would work naturally with someone's body instead of altering the biochemistry.

    I earned my PhD from MIT in mechanical engineering, and really had my eyes opened to the idea that if solutions don't already exist then go ahead and create one. People have been using what we call binaural tones for a long time. 2000 years ago, Tibetan monks were using singing bowls, which have a very interesting effect on the brain in a natural way, to encourage meditation and calming effect.

    I have optimized that for sleep using actual brainwave measurements in real time to adjust these tones in a customized way. I have invented a comfortable headband that people wear while they're sleeping, and it has some built-in speakers that play binaural tones designed both to help people go to sleep but also to help people stay asleep.

    I think the technology is just beginning to scratch the surface on how we can have the first real technological solution for sleep. I'm hoping more inventors will join me in a quest to help people sleep better, because we can help a lot of people in the process.

    I am clear that the device is not a magic solution or a cure for the condition. I find that I am able to share important things from my own research, but mostly from dealing with Jessica and watching how she deals with narcolepsy in her own life.

    JESSICA LARSON: Honestly, it has changed my life. I went from barely functioning and being really sick all the time, and I'm about to graduate from college now. So it has made a huge difference.

    MICHAEL LARSON: I get my greatest motivation from thinking about how I can help people live better lives. I can't tell you what a great feeling that is for me as a dad, to know that I've done something to help my daughter.

    [MUSIC PLAYING]

    LEARN MORE

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    Tya was relieved to get an official diagnosis. Before that, she couldn’t explain all the napping and night terrors.

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