That picture flat out cracks me up every time I see it. It seems to very quickly sum up my crazy route toward successful mitigation of my narcolepsy symptoms.
If you’ll recall, in my last post I invited you to join me and my narcoleptic family for this ride out of narcolepsy and into life. It’s gonna be loads of fun. I love road trips! We’ll put my family in the backseat and I’ll let you ride up front. But only at first because later I’m handing the keys to you and letting you drive. Hold on though. Before we go on this madcap ride, let the record show that in my previous post I did tell you to buckle up since the road is curvy, has pot holes, unexpected detours, and u-turns. Just sayin’, you were warned. Don’t be scared though, I know where most of these road hazards are so that’s why I’m driving at first. But later on? When there’s so much gorgeous scenery that you can’t take it all in? And when you are awake enough to want to see the places that you only ever dreamed of? Well, that’s when I’m going to let you drive. So get on it, buckle that seat belt. Is it snug? Wait…no? What?!? You’re not going to buckle up till I tell you where we’re going? Fine (sigh and immature eye roll), be that way.
Putting all the childishness and kidding aside, let’s get to the real nitty gritty of what I’ve been rambling about so we can move on to the good stuff.
I’ve had narcolepsy all my life with major onset of symptoms in adolescence, and formal diagnosis in my early 30’s. My mom has had it since her teens and was diagnosed in her late 40’s. AND my ex-husband was diagnosed in his late 30’s right after our son was diagnosed at age 15. I know, I know, I KNOW! It’s a bit crazy but it’s totally true. So here’s the picture I’m painting… I know narcolepsy more intimately than most. I am a person with narcolepsy (PWN), was a partner of a PWN, am the mother of a PWN, and am the daughter of a PWN. I have seen this disease from more angles than I care for. As I add posts to this website, I’ll share more details about our lives and you’ll get to know better our individual stories and the degree to which narcolepsy has affected us. I’m saying all this because I am living proof, as is my mom and son that there are ways to ease the stranglehold narcolepsy has on your life. Ways to wake up and stay up. Ways to be productive and a full on participant in your life. And, miraculously, be able to lay down and actually sleep at night…like, you know, real, RESTFUL sleep. And guess what? My family is not alone in this adventure. As I type this post, there are two Facebook groups (Keto PWN and Gluten Free Narcolepsy) with 1000+ members that all do something dietary and/or lifestyle related to mitigate their narcolepsy symptoms. Some are medication free, some have reduced their meds, others are still on their normal doses of meds but are filling in the gaps with these changes. But we are all doing something diet related. We have some form of control over this seemingly uncontrollable disease for the first time in our lives. And most of us wouldn’t go back to the life we had before if you paid us to.
So why did I feel the need to create this website? Well, not to brag, but my family and I have been amazingly successful for many years in maintaining wakefulness. Sounds kinda cocky. Well let me tell ya, I’m not being cocky, just honest. We’ve made so many mistakes and fallen down on our faces so many times that we qualify for honorary degrees at the Narcolepsy Diet School of Hard Knocks. But somehow, we get back up. Sometimes with help and sometimes with sheer attitude. “In your face Narcolepsy!” if you will (note that yes, I did just stuck out my tongue). In getting back up, we’ve created some “do’s and don’ts” that help keep us from repeating mistakes. And here, my friends, is where that goofy road sign up there comes into the picture.
Check it out again. See how it has arrows going every which way and has crazy curves? These represent the turns (a.k.a. “mistakes”) my family and I have taken on our madcap ride. But look real close, there’s one arrow that points straight ahead. It implies a more direct route, right? Well kinda. At least it’s all these things for the next section of the road. This is the section of the road I’m going to take you down. Instead of the crazy wrong turns, detours, and U-turns that my family and I have taken, I’m going to drive you down that straighter, more direct, and faster route to the next section of the road. By the time we get into unknown territory, you will be more knowledgeable of and more comfortable with navigating this path out of narcolepsy and into life. And that’s when I’ll hand you the keys and let you drive. That’s when we get to experience totally new adventures together.
I’m sure you’re curious about this more direct path and what stops we’ll make along the way. Ask and you shall receive! Here’s a very, very basic outline of our trip:
- We’ll take a high level look at the science-y stuff that explains why my family and I took the path we took and why I think it’s working. We’re going to keep it super simple at this point since you’re currently in the full grip of narcolepsy and need what brain power you currently have just to survive. Later on, when you wake up a bit, we’ll dive deeper and get more science-y.
- I’m going to show you how to use diet to mitigate your symptoms. I’ll be sure you know the bare basics of the diet and some of the base science for each. We’ll look at some of the symptoms of withdrawal from certain food types, but of course we’ll also look at ways to ease the pains of this part of the trip. Later on we’ll take the diet to a higher level to take a deeper path into wakefulness, but that’s getting ahead of ourselves.
- I’m going to give tips and guidelines, a road-map so to speak, that will set you up for success. You see, in my mind one of the primary reasons my family and I were able to make this diet successful was because of the prep work that happened before we ever changed the food that went into our mouths. I’ll share with you all the steps we took that built up to day one of the diet, to include things like:
- Journaling. Sounds simple but this is an important step that you’ll understand later. Just trust me.
- Seeing your doc and getting baseline stats logged as well as their buy-in.
- Mental and emotional preparation, getting your heart and mind wrapped around this new concept.
- Getting your family and friends on board with your plan and supporting this change.
- How to shop, where to source good foods, what types of helpers are out there (websites, smart phone apps, etc.).
- How to identify and remove foods from your kitchen that are not on the plan and are possible kryptonite. AND how to survive this step without losing your marbles.
- Shopping lists, meal plans, and recipes. My goal is to keep it simple, get you in and out of the grocery store at the speed of light, spend as little time as possible in the kitchen slaving over the stove, and not break your bank account in the process.
- And yes, we will finally reach “Day One,” one of our most important destinations. The big kickoff of your new life. I planned a big parade and such but thought it might be a bit much so I cancelled all that hoopla. We will kick it off big time though because this day will become the first day of the rest of your life. Seriously.
- We’ll trek through your first week all the way through to the end of the first month. It’s here that we’ll discuss different road blocks and detours that sometimes pop up. Things like traveling, eating out, eating at group events, etc. I’m even going to teach you how to eat safely from a convenience store. Yuh huh.
- When we get to Week Five the trip will get more detailed and interesting. This is the part of the trip where I’ll dive deeper into the science-y stuff since you’ll be more awake and can absorb more details. We’ll take a look at refining the diet and moving it to a more clean version using diets like The Wahls Protocol, Paleo, AutoImmune Paleo, Primal, Nutritional Ketosis, etc. We’ll look at infection control (Huh? Yep, this is important and I’ll go into it once you’re a little bit more awake cuz it’s confusing to say the least), improving gut health, supplements, and lifestyle tweaks.
- We’ll have loads of time to chat during this adventure out of narcolepsy and into life. When we aren’t enjoying the scenery and stopping at cool spots, we can talk about things like “Breaking Bad,” habits that is. Or how to rekindle your dreams now that you’re awake. And how to let go of some of the emotional baggage that can reduce your mileage per gallon on future road trips.
- Eventually, we’ll pull over and I’ll let you drive. That’s the really exciting part of this trip and the one I am most looking forward to.
Okay, so now that you have an idea of where we’re going and of all the madcap adventures we’ll be taking, will you finally…for goodness sake…hurry up and put that seat belt on? I’m so excited I could burst any minute now.
Your Madcap Miss (a.k.a. Gina Dennis)
Let me be totally up front here…I AM NOT A DOCTOR, nor am I a nutritionist, I only have a tiny amount of formal training in such things as a Health Coach. But I am a person with narcolepsy who uses dietary and lifestyle changes to mitigate my narcolepsy symptoms. I’ve been experimenting with these changes since July 2011 and have successfully maintained a high level of narcolepsy symptom management since that date. And so has my family with narcolepsy. This website contains our personal stories, failures, and experiments. In this website I will share with you the information that I have found most credible and some practical ideas for mitigating narcolepsy symptoms. I beg you to check with your doctor before initiating any of the dietary changes I speak of, especially if you are taking any medications.