If I could to anything as a health activist, I would start a rehabilitation facility for narcoleptics; lets call it the Sleepy Center. Here’s a few things we would feature:
Sleep specialists that know about narcolepsy. Heather has alluded to the recent survey that was taken about sleep specialist awareness of narcolepsy. At the Sleepy Center, we would only have doctors that know about us.
Narcolepsy education. Learn what narcolepsy is, what it isn’t; and what hurts and helps your brain. Classes in basic neuroscience and autoimmunity for those more advanced.
School for narcoleptic kids that doesn’t start at 7 am. Actually, it doesn’t even start at noon. I’m thinking around 3 pm or so. Flexible due dates. Truancy not an issue. Learn at your own pace and in formats that are especially in tune with your individual needs (like learning while moving instead of sitting in a quiet room at a desk). Also, getting made fun of for sleeping on the bus won’t be a problem since we won’t have busses; we will also not tolerate people being made fun of for falling asleep.
100% gluten free and sugar free (low-carb) cafeteria. We’ll take care of your food so you don’t have to worry about it. In the mean time, we’ll also have classes to help you learn quick & healthy meal prep and how to do gluten free (or other allergen free) on your own time.
Allergists, nutritionists, and autoimmunologists to help identify any exogenous sources of inflammation that may be aggravating your narcolepsy. Eliminating as many of these as we can will help you recover more quickly.
A running track surrounding the building.We’ll also offer lighter indoor exercises (such as Yoga and water exercises) for those who just can’t get into running.
24 hour day care for non-narcoleptic children who are there with narcoleptic parents. That way, you can still be around your kids, but you can take the time necessary to focus on you for a while, while you learn tools to help you succeed in your effective parenting classes.
Effective parenting classes for narcoleptic parents of non-narcoleptic children. Parenting is hard work. Parenting is even harder with a chronic illness. The Sleepy Center’s effective parenting classes will teach you tricks from other narcoleptic parents on how to be extremely effective at parenting. Time savers and how to handle your kids when you’re tired (and grumpy).
Effective parenting classes for non-narcoleptic parents of narcoleptics. Your kid’s not just lazy. We’ll teach you how to parent a child with a chronic illness with compassion & how to help instead of harrass.
Family center where the whole family will come and learn about narcolepsy. All chronic illnesses are family illnesses.
Meditation/mindfulness based stress-reduction center. Learn how to handle yourself in a more compassionate way. You won’t always have control, and that’s ok.
Therapy. Therapy. and More Therapy. If you don’t like it, you’ll be rotated on different talk therapists until you find one you like. And then go to group therapy.
Art therapy. Paint your hypnagogic hallucinations. Unless you want to keep it, these paintings will be auctioned at an annual fundraiser to raise money for narcolepsy research.