Narcolepsy Education Collaborative

Early this month, I was surprised and truly excited to be asked to participate in a Narcolepsy education project. My participation in the project was to attend a meeting where we reviewed and provided feedback on materials that will soon be put together to create a toolkit of information for the Narcolepsy community.

This was just one step in many that are to come before the final toolkit can be revealed, and I am more than excited to see how this will help our Narcolepsy community to grow!
(Grow by means of people with Narcolepsy becoming better informed and empowered to be self-advocates. And yes, grow by increasing awareness to hopefully help those who are undiagnosed finally get their diagnosis. While that is not something to be particularly excited about, it's still necessary!)  

These 14 representatives from the Narcolepsy community met on Nov. 7th
to review and provide feedback on a draft of the Narcolepsy toolkit materials.

Read on for the full official summary of the meeting:

"On November 7, 2015 the Narcolepsy Education Collaborative meeting assembled in Los Angeles, California to discuss and review draft toolkit materials to benefit the Narcolepsy community. 14 representatives from four Narcolepsy patient organizations, including two national groups and six patients, met to review educational toolbox materials focused on Narcolepsy. We appreciate the efforts of Global Genes and SmithSolve Communications in organizing and hosting this meeting.

Narcolepsy Network was represented by the President of the Board of Trustees, Sarah Didavide, along with multiple organization board members and volunteers. Wake Up Narcolepsy was represented by Director & Co-Founder, Monica Gow, and several other organization members. Carrie Ostrea, Manager of Patient Advocacy at Global Genes, discussed with the meeting participants what it means to be a patient advocate, the importance of collaboration and the difference just one individual can make. Carrie also discussed the potential to organize and host regional Patient Meetups focused on Narcolepsy in 2016. Participants from the national organizations collaborated and shared their feedback to the below listed toolkit materials:

• Boilerplate for advocacy organizations to use in news releases/media
• Narcolepsy Frequently Asked Questions (FAQ)
• Narcolepsy resource list
• Education Advocacy brochure, including IEP information 
• Infographic on time to diagnosis 
• Patient self-advocacy brochure
• Social media graphics and messaging

Feedback from meeting participants will be incorporated into the toolkit materials in the coming months. Once finalized, the toolkits will be distributed to Narcolepsy community members. A microsite will be launched in early 2016 and will house the toolkit materials along with other resources for the community."

Dean's List

I was so happy today when I checked my student online account. After I ended Spring semsester with a 3.5 GPA, I wasn't sure if I would qualify for Dean's List or not. I couldn't figure out if it was cumulative or based merely on that current semester.

Well I figured out out: it's definitely semester based, and I made the Dean's List at University of Toledo for Spring 2014! :D

My GPA at my last university was a pretty terrible 1.77... I say terrible because for me that really IS dreadful. In high school, I had a 3.5 overall GPA, which could've been even higher had I got been struck with narcolepsy during my junior year. 

It means a lot to me to finally have my life back on track! And it's all thanks to my friend Katie who told me last summer all about how much Xyrem was improving her quality of life and convinced me to try it too. 

Now I not only can drive again but I also have my very own car, I have a full-time job and don't even need to sneak off to nap during breaks, I'm attending college again and feeling good about it, and I'm not only doing well at school, but I managed to make Dean's List my first semester back!

So Thankful for Crystal Light!

It's a good thing Xyrem works so well at giving me a better night's sleep, because the taste almost isn't worth it...

I've heard so many different ideas of how other people with narcolepsy take their nightly doses of Xyrem. From mixing it with Gatorade, orange juice, or lemon-lime soda, to simply sucking it up and taking it plain (my least favorite option). 

The absolute best thing that I have found to cover the taste, without interfereing with the efectiveness of the dose, is to add a little liquid Crystal Light flavoring. The strawberry lemonade is definitely the best; it really covers up a lot of the bitter Xyrem taste.

 

It has 0 calories, so it won't interefere with the amount of sleep you get per dose (at least I have never noticed any differences). It just makes it so much easier to take my nightly doses, without having to mentally prepare myself and cross my fingers that I can force it down in one gulp!

Good News

So if you've read my previous posts, you know that I was doing really poorly at my first university. I took a break last fall so I could start taking Xyrem and then transferred to the University of Toledo for a fresh re-start close to home. 

The semester is just about over, and I've already received a final grade for 1 of my 4 classes...

I got an A- in my Philosophy course! Of the four classes I took, this was the one I was most concerned about (the work load was the heaviest). 

I still have to finish finals this week to get the rest of my grades in, but even this one grade shows how much I have improved academically since I started taking Xyrem :) I can't believe that I'm actually excited to look at my final grades, instead of dreading it like I did when I was struggling through school.

Cutting Prozac Out of my Daily Meds

Since Xyrem has almost stopped my cataplexy attacks, I decided last fall that I wanted to stop taking the antidepressant I started in July for cataplexy. I didn't like some of the side effects; it was making me more nervous than I already naturally am, and I learned that it can prevent weight loss which I definitely didn't want happening.

Since I work at a school and was worried about the withdrawal effects making me moody around the kids, I had to plan to stop taking them over a break. Between having surgery, longer-than-expected recovery, and turning 21, that opportunity didn't show up until spring break after Easter.

So now, it's been an entire month off of Prozac and I haven't had any weird withdrawal symptoms! All that worrying for nothing lol. There has been a small increase in cataplexy which is manageable, and, strangely enough, I'm once again having hallucinations when I sleep.

Nine months on Xyrem and I wasn't having ANY hallucinations at night or during naps like I did every time I fell asleep before Xyrem. It was a major relief! But now I'm noticing occasional hallucinations when I nap, and sleep paralysis the other night before my Xyrem had fully knocked me out, but nothing so horrible that I can't deal with. I think it's pretty interesting, and definitely not a side-effect of cutting off antidepressants that I had expected. Really, the only change I've made was cutting out my Prozac, so that has to be the culprit.

And now I'm laughing out loud at myself as I write this, because I just realized if I were to say to a non-narcoleptic that I stopped my Prozac then started hallucinating again, I'd probably get some funny looks and psychiatrist referrals. Thank god I'm part of a wonderful community of people with narcolepsy who understand what I mean! :)

Suddenly Sleepy Saturday

I received the coolest piece of mail I have ever gotten today... A proclamation from Governor Kasich officially recognizing March 7th, 2015 as Suddenly Sleepy Saturday in the state of Ohio!

Suddenly Sleepy Saturday brings National Sleep Awareness Week to an end and annually lands on the day before we change our clocks in the spring for daylight savings time. It's a day to bring awareness to narcolepsy. I like to think of it as the unofficial narcolepsy awareness day :)

Tomorrow, I'll be taking part in the SLEEP IN Challenge! I have pledged to stay in bed for 24 hours this weekend. If you'd like to learn more (or if you'd like to donate to the cause!) check out the link below:

https://www.crowdrise.com/juliefain-sleepin/fundraiser/juliefain

Stanford Sleep Center’s New Sleepy Dog

I was excited the other day when I did a Google news search for “narcolepsy” and came across this article about Stanford Center for Narcolepsy's new pet: Watson, the narcoleptic Chihuahua. 

I won't bother re-telling the details of the article, since it's really interesting and you should definitely read it for yourself. I just think it’s absolutely perfect that Dr. Mignot has this dog. The article talks about how he takes Watson with him when he is seeing his children narcoleptic patients. Dogs in general are amazing for calming people and relieving stress; but having a dog that collapses when Dr. Mignot offers him a treat and he gets excited? That’s something that these scared narcoleptic children can sort of relate to and help them understand their own cataplexy as well.

Even though I was diagnosed at 16, I can imagine that having a dog like Watson in the room with me when I was diagnosed would have helped me too. It’s a difficult situation, and it’s nice that Watson is unknowingly able to be a comfort to Dr. Mignot’s patients.

While I never got to meet Bear (Dr. Mignot's first narcoleptic dog who recently passed away), I’m hoping that someday I’ll be able to meet Watson!