Big changes coming in 2018 for Madcap Narcolepsy. Watch the video and join me on a journey OUT of narcolepsy and INTO life!
https://youtu.be/qEqC0QJn0Qk
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.
Hi Gina
I have joined your facebook group as my daughter has recently been diagnosed as having narcolepsy (and sleep apnea. We live in Ireland. What you are doing is fantastic for those of us who are supporters of PWN. Breaking this diet down into small easily understandable pieces is great for me. I would be seriously interested in getting the coaching you are talking about in this video. Do you do any short courses in the U.S. We would be willing to travel to see you if it would be useful. Like your son, my daughter is an incredibly high achiever with terrific willpower – or at least she was before this hit her.She wanted to be a doctor but cannot see a way to manage the hours. All her ambitions are being downgraded now. I would love to try this.
I suppose my bottom line is – I do not know very much about nutrition (what is the magic number that makes something low in carbs?) and I would love if there was some coach that could be with us along the journey to going on this diet. I am reading lots but I am still not sure how to proceed. For example, what can I start her on if she does not drink tea or coffee. Can I give her a smoothie? What is allowed or not allowed in it? Would I be better to start by moving all her meals to lower carb or am I then risking her health by leaving some other essential elements?
I am sorry for rambling but this is where I am at and why I see such a need for coaches/courses.
I am so glad you have found a way of helping yourself and your son. It gives me hope.
Denise…
Yay, I’m so happy to see that you joined the Keto PWN group on Facebook. So many lovely supportive warriors in that group. Are you also part of the Narcolepsy in Ireland group?
Coaching: I’m working hard to create a program for this. My goal is to be ready by the end of this month. Hours are pretty limited due to the fact that I have a regular full time job but I would love to see what we can do. Reach out to me at madcapnarcolepsy@gmail.com and let’s see what we can do. Also, I have a series of blogposts coming out that will walk you through the steps (LOADS more information than my presentation at last year’s Narcolepsy Network conference had) AND an online course is being built that will hold your hand even more (estimated release date is sometime this Spring). AND, Marion Heneghanwhenbold Roache is in Ireland, has narcolepsy and does the ketogenic diet, and is a qualified health coach. That actually might be your better option.
Most folks, when they jump into the diet full on, will start with their Net Carbs at 20g a day (NET is carbs – fiber). Eventually we work to bring that number up but this is usually the starting point that most online keto diet guides will start you at. Keep in mind that the first 10 days can be rough as you will likely experience keto flu. My approach is slower and easier for a person with narcolepsy to do on their own… the approach most of the keto guides take are great for the supporters of people with narcolepsy to do for them till they are awake enough to take over.
MCT oil doesn’t have to be in coffee or tea, that’s just the most popular way. It can be in Fat Bombs (Google for recipes), in smoothies, drizzled over your meal like you would butter, used in salad dressings, or just taken like a shot.
Hope this helps. If not, come on back and let’s keep plugging at it so you feel comfortable.