Stories

By Danielle B.

When you have a condition like narcolepsy (periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time) with the symptom of cataplexy, (muscle weakness and paralysis brought on by strong emotion reactions), you can, and rightly so, start to doubt your abilities and what you can achieve in your life. Many, including myself, feel cataplexy “lurking” in our body all the time, ready to sneak-up and take over. I personally began to guard myself while doing simple daily tasks, like walking up stairs, standing near windows in a tall building, laughing too much, and even riding in elevators.

I found the allure of sleep made the thought of riding a bus or even sitting down in a shoe store questionable for me. Leaving the predictability of home started a series of questions. What if I collapse? How long will I be in paralysis? What if I fall asleep on the bus? Will I wake up if I dose off? Will I wake up to my alarm? Will I have enough energy to make it? Where can I take a nap?

That has all changed for me now due to a magnificent dog named Rollo from Canine Partners for Life.  Rollo spent the first two years of his life training for his role with me. He has put an end to my questioning and I no longer worry. Together, Rollo and I are the test pilots for narcolepsy and cataplexy.

• Rollo helps me conserve my energy.
• If I collapse, Rollo will help me down and back up again.
• If I am paralyzed, Rollo will stay by my side.
• Rollo wakes me with a lick and wonderful wet nose whenever my alarm goes off.
• If I need a nap, he will lie with me and wait for as long as I need.
• Incredibly, he “alerts” me before I have a sleep attack, headache, and/or dizzy spell. (He does not alert me to my cataplexy, but I think that is because I feel some level of cataplexy all the time.) He certainly helps stabilize me if I am having any issues.
• He pulls me forward all day and I am less tired at the end.

Rollo, in short, has changed my life because he lets me focus on living my life and not on worrying about my disability.

So, I am four years into having Narcolepsy/Cataplexy, and what makes living with this disease hard is that it is an “invisible disability” that many people don’t even know you have. They think I am perfectly normal, except for looking drunk when I laugh, or that I always walk next to the wall and that I spend a lot of time at home with my family. They don’t SEE what we experience, which is everything narcolepsy and cataplexy brings, plus that loss of independence many of us share.

With Rollo beside me, that invisibility is forever stripped away. The world now definitely knows that I have “something.” In fact I now talk about narcolepsy and cataplexy more than ever, and people are fascinated.

I needed a little extra help to continue my extraordinary journey. An amazing organization, Canine Partners for Life, my community, and a wonderful yellow Lab named Rollo have made this possible. I am heading off to college next year with Rollo by my side and now I know I have the confidence to do anything.

By the way, my Rollo even has his own Instagram page, which we’d be thrilled for you to follow. It’s instagram.com/GoRollo#.

-Danielle and Rollo