I received an e-mail a few months ago that made me smile pretty big. It was from a reader who had come across the blog about a year ago, and then noticed I quit posting updates! She reached out to see if I was OK, and specifically to ask if I was “feeling so much better that [I] didn’t feel the need to post updates.” I hate it when blogs to un-updated for a long time, so I wanted to take the time to give an update on everything that’s been happening in the “Gluten Free PWN” community – and boy is it a LOT!
Around September of 2014, we launched www.GlutenFreeNarcolepsy.com, a website intended to be a central resource for happenings in the Gluten Free PWN community.
We’re working on building the site so that it’s easy for people interested in implementing a gluten free diet or other lifestyle changes in an attempt to mitigate narcolepsy symptoms to find active blogs, the Gluten Free PWN Facebook page and the basics of what our little movement is about.
We’re always looking for testimonials to publish – if you’re interested in sharing your story, please e-mail us at firstname.lastname@example.org!
2014 Narcolepsy Network Conference in Denver
In October 2014, Heidi, Gina and I attended the 2014 Narcolepsy Network Conference and I gave a talk to a PACKED room of people about using dietary strategies to mitigate symptoms of narcolepsy. It was such an honor to be a part of the largest patient-oriented narcolepsy conference and to be able to present survey data we’ve generated from our groups showing the different dietary changes that PWN make and how it helps improve their symptoms.
Just before the conference, Paleo Movement Magazine published an article about the upcoming talk, entitled “Paleo Narco: Applying Paleo Principles to Narcolepsy.“
Kitchen Table Hypothesis
Hypotheses have been brewing over at the Kitchen Table. Earlier this year, Heidi L. published a paper entitled “An Evidence and Experience Based Mechanism for Narcolepsy.” Featured components include a detailed analysis on the role of infection and antibiotics, and the interplay of intestinal permeability in the pathogenesis of narcolepsy.
Madcap MissAdventures of a Narcoleptic
Gina (AKA Madcap Miss) has been busy launching her new site “Madcap MissAdventures of a Narcoleptic” and boy does she have some big things brewing! Recently she was busy with a very successful Sleep Walk in Dallas Forth-Worth – Dr. Todd Swick was a special guest! Gina also attended the 2015 Narcolepsy Network Conference to promote awareness of her new website, which is sure to be a great resource to the PWN community. Stay tuned, and follow her on Twitter and Facebook in the meantime!
Other News Adventures
My good friend Charrisa was featured in the newspaper for her school, Webster University in a piece titled “Battling Narcolepsy with Nutrition” in which she describes her journey with narcolepsy and nutrition and how since being properly diagnosed and making dietary (gluten free, of course!) and lifestyle changes she now says: “I’m not failing to thrive,” Martin said. “I feel healthy, and I have a drive. I feel like I can succeed now.” We love you, Charissa!
Many of the e-mails I get are in reference to some of the specific things I’ve said help my narcolepsy: Am I still doing gluten free? Do I still take L-tyrosine and carnitine? One of the constants in my life health-wise is I am always trying to do the best thing for my body at the time. I’m not perfect, and I change it up a lot. I think that I’ll always identify as a “biohacker” and always be looking to improve what I can. My lifelines are nicotine and caffeine, and I still take tyrosine (although I found larger doses aggravated my anxiety). I’m currently working on biohacking anxiety and I’m prepping a blog post on that.
I’ve been finishing up my PhD at the University of Florida, and I’m slated to defend my thesis in January (hence my lack of recent updates)!