By Danielle Brooks
As many of you know, when you have a condition like narcolepsy and cataplexy, 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.
In addition, 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. You may ask these yourself. 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?
Even just wondering about these questions makes me tired sometimes. So, I found that I started to make either/or type choices. Do I go to the mall or just order it on Amazon instead? Do I go to the game or stay home and watch TV?
That has all changed for me now due to a magnificent dog named Rollo from Canine Partners for Life (k94life.org). 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.
Canine Partners for Life specializes in service dogs for people with mobility issues, diabetes, epilepsy and cardiac issues, etc. 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.
I could gush over his brilliance for hours. Above all, he is kind and loving and he knows that we are partners!
Rollo, in short, has changed my life because he lets me focus on living my life and not on worrying about my disability.
So, most people have two questions. Why did you choose Canine Partners for Life, and how expensive was he?
We chose CPL because this wonderful organization specializes in helping people with a wide variety of mobility and neurologic conditions, including ALS, arthritis, cardiac-related disabilities, cerebral palsy, chronic back/neck problems, chronic fatigue syndrome, immune dysfunction syndrome, diabetes, epilepsy/seizure disorders, fibromyalgia, multiple sclerosis, muscular dystrophy, myasthenia gravis, paralysis, Parkinson’s disease, spina bifida, spinal cord injuries, stroke and now narcolepsy and cataplexy.
It turns out narcolepsy and cataplexy have many similar symptoms to a large number of these conditions. CPL understood and identified with what was happening to me, a person with narcolepsy and cataplexy. Their 25 years of experience in helping people with disabilities enabled them to offer great insight into what a service dog could do for people with narcolepsy and cataplexy. They were confident they could help.
To train a service dog like Rollo, it takes two full years and costs CPL approximately $29,000. However, if you are selected to receive a dog, CPL only asks that you fundraise a portion of that cost. No one is turned away due to financial issues. You do, however, also need to be prepared to fundraise to pay for the three-week training session in Pennsylvania. But even then, there are local families in the community that know Canine Partners and volunteer a place to stay in their home if needed.
So, I am four years into having N/C, 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. This gift of independence and confidence is truly worth the price.
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#.