Emily’s Narcolepsy Advocacy

I wanted to take some time to share with all of you the journey Emily has been on with her narcolepsy advocacy and snowmobile racing. 

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Narcolepsy is a rare neurological/auto immune sleeping disorder that affects 0.05% of the population. The number one symptom is excessive daytime sleepiness (EDS) which is the equivalent of a normal person staying awake for 3 days straight and trying to function without any kind of stimulant. That level of exhaustion is what Emily feels on a daily basis and depends on medication in order to function and stay awake. People with narcolepsy also experience insomnia, disrupted nighttime sleep, sleep attacks, sleep paralysis, hypnagogic hallucinations, and cataplexy, which is a loss of muscle tone brought on by a strong emotion or laughter. Emily was diagnosed in 2012 after experiencing symptoms for many years. It affects all aspects of her life.

I will start off at the beginning which was 3 years ago. One night in November of 2017 I couldn’t sleep, and I was up in the middle of the night. I decided to share Emily’s Narcolepsy story and her racing efforts with the Narcolepsy Network, the nation’s largest nonprofit organization for narcolepsy advocacy. It just came to me to start writing up an email and I clicked send on it at 3 am in the morning. The next morning they emailed me back! They loved Emily’s story and they wanted to learn more about her. I showed Emily this email and she started crying because it meant so much to her. I had emailed them without telling Emily and she couldn’t believe I did that and that they contacted me back. 

The reason I contacted them was because Emily had always wanted to help others with narcolepsy and educate people. Emily always felt like she didn’t know where to start and how to go about advocating for narcolepsy. I always felt like she could describe things so well about narcolepsy and connected well with people. I also knew I couldn’t provide enough of a platform on my own to be able to help Emily in a way that she would benefit most from. I decided I would contact the Narcolepsy Network and maybe they would be able to help Emily with her dreams of helping others.

Emily has had some unique opportunities since then. In the summer of 2018 Emily and I were part of Know Narcolepsy campaign videos that are posted on their website and YouTube page. They came out to our area to do 2 days of filming. This was an amazing experience for me. I will never forget watching Emily being interviewed. I was at one point watching the monitor screen and I forgot that it was live. Emily was doing such a great job answering questions that I honestly thought that it was the final edited video I was watching. Emily did so good answering the questions that the lady that interviewed her even said that of the 100s of interviews she had done that Emily was the best one she had done! These videos were released to the public about 6 months later. It was amazing watching the final edited videos and how well they came together. Emily has had people contact her telling her her Know Narcolepsy videos they used to help educate other people about narcolepsy because they feel how Emily explains things is easier to understand than they can explain on their own. That whole process really validated to me that I wasn’t crazy. I just felt I knew Emily was capable of all of this and just needed the rest of the world to be aware of what I already knew for years. I just knew that Emily had something special and really when the film crew was so excited about the footage they got of Emily and her answers it really was something special to be a part of and get to witness. I think at one point they drilled Emily with questions for like 3 hours straight and I don’t think she ever slipped up. It was surreal to see someone just be that on their game and showcasing what they were meant to do! To find Emily’s Know Narcolepsy videos visit this link https://knownarcolepsy.com/stories

One of the other really cool things was in October of 2018, Emily and I attended the Narcolepsy Conference in Indianapolis and Emily did a presentation there on her life story. The presentation was really a turning point for me. As I was watching the presentation and seeing so many others touched by Emily’s story it really had a positive effect on me. As far as the snowmobile racing goes I realized that it was the fact that Emily went after her dreams that really connected with people. It wasn’t so much about winning races as it was about the fact that she was just competing in the first place, that by going out there and doing something that was meaningful to Emily and that she didn’t let narcolepsy keep her from racing. I came out of that presentation with a whole new outlook on things. To see this presentation in its full length visit this link https://www.youtube.com/watch?v=uprP_NjbX6Q

The Narcolepsy Conference was the first time both Emily and I got to meet others that have Narcolepsy and their family and friends that were their supporters. The Narcolepsy Conference is really the best way to really learn about the effects of narcolepsy and all the latest information on what’s available in resources, medications, and support groups. It would be impossible for me to even remember everything all that you can learn at the Narcolepsy Conference because of how much is offered at the Narcolepsy Conferences. 

One of the best sessions at the conference for me was one they had for caregivers. I can remember a couple moments from that session. The first one was a guy that was overwhelmed with working so many hours at his job to try and support his family. He was doing everything he could to be supportive of his wife with narcolepsy and his struggles were with taking care of himself and really struggling with trying to be there for his wife but yet he wanted to know how he can also take care of himself. They had kids together as well. At that time I wasn’t a parent yet, so it was eye opening of how much narcolepsy effects families. Even though I had been with Emily for 5 years at that point we had never had that deep of struggles as this guy was going through. It was eye opening of just how much effect narcolepsy can have on people. Every narcolepsy story is unique and different. The more narcolepsy stories I heard the more educated I was becoming how narcolepsy can mean so many different things. The host of this session asked me if I had anything to say, somehow sensing I wanted to say something but maybe too shy do so on my own. I was glad she had the courage to ask me when I struggled to speak up myself. I can’t remember everything I said but I talked about mine and Emily efforts of trying to help others with narcolepsy and Emily’s presentation she would be giving and some of our experiences dealing with narcolepsy.

I remember it was at the end of the first day of sessions that we had pj karaoke night. Everyone dressed in their pjs and just had a fun night of singing karaoke and if you weren’t up for singing just enjoying a fun night of music and interacting with others. For me this was like heaven of “are you serious we get to sing karaoke tonight?!” I love singing karaoke. It seems like I sang almost 10 songs, I don’t know the exact number but I was up there a lot! Everyone seemed to really enjoy my singing and it was fun meeting people in a more relaxed and fun environment. I was getting comments the next day about singing and even at the support group session the leader of it said I thought they brought a ringer in to sing and was joking with me “wow you were so good at singing we thought you were a hired singer”. That was one of the highlights for me getting to sing karaoke and seeing such joy in everyone in attendance.

I also remember meeting Savannah and her mom Terri. Savannah has been so resilient in not letting narcolepsy hold her back. She is a dancer and we heard about her journey getting through college with an academical, athletic, and social life. Her mom Terri is very supportive and educates herself on what it is she can do to help Savannah. It was really awesome to see such a close bond between mother and daughter both fighting narcolepsy together. I still to this day am not sure I’ve met a more supportive caregiver than Terri. 

Emily’s diagnosis of narcolepsy and her advocacy efforts have changed how we have approached our snowmobile racing. Instead of just chasing trophies, I really wanted to use my talents to help do something bigger than just snowmobile racing. I had been racing for 11 years at that point with just a singular focus on winning races. Going forward I wanted to help Emily’s efforts with narcolepsy advocacy, and I wanted racing to be a part of it. It honestly rejuvenated my passion for snowmobiling and racing! It made things new and exciting for me again! 

We started to dive into improving our speaking skills and social media work. Emily and I created a Facebook Racing page https://www.facebook.com/kreuzigerracing/ and eventually an Instagram page https://www.instagram.com/kreuziger_racing/. We started doing videos that we talked more in to more connect with fans. We also researched a lot on marketing ourselves better. We really decided we needed to promote our racing better and have more to offer. We even made a racing resume to present to potential sponsors. We started to pursue more sponsors as well. In the first decade of my racing I just focused on winning and assumed everything else would take care of itself. I can tell you that in racing it doesn’t work that way. You can win all the races you want but in general people don’t just approach you wanting to sponsor you. I’m not going to get too deep into this but in a simple explanation you have to have way more than just on-track success to offer. You have to understand marketing, be presentable, have communication skills, and also you really have to get out there and contact people and not be afraid of being told no. You get turned down probably more than you hear yes but that’s all part of it. 

I will share my most personal story of the effects of narcolepsy. Emily and I decided we wanted to have a kid. Emily having narcolepsy first had to get off of all of her medications starting in December of 2017 before even trying to conceive. This was a lengthy process. It took until May of 2018 to be off of all of her medications. I remember some really rough days Emily had getting off of medications. To put it in context Emily was now having to come off of the very medications that helped manage her symptoms. As you could imagine with how hard Emily fought to get diagnosed with narcolepsy and properly treated that coming off of all these medications was not something she would be looking forward to. Then once getting off of all of the medications it took until November of 2018 before Emily was able to get pregnant. 

This new life without medications and being pregnant was the hardest I had seen Emily struggle up until that point. To best explain the struggle, Emily lost a lot of her independence. She no longer felt comfortable driving a car more than 5 minutes away with the risk of falling asleep. I drove her anywhere she needed to go with appointments, grocery shopping, if she wanted to get out socially and for many other things that we all just take for granted. Emily also went from working 50 to 60 hours a week to struggling to get to 35 hours a week. That had an effect on our income and adding even further challenges to things. 

One of the biggest challenges of pregnancy was that both Emily’s sleep specialist and our local hospital had no experience with somebody with narcolepsy trying to have a kid and going through pregnancy. So you can imagine how scary the process is just for anybody having a kid and now imagine the appointments you go to, they too don’t really have a whole lot to be able to tell you on what to expect. So you want to talk about feeling like you’re on your own to figure it out, that’s how Emily was left and really me too as her husband. 

So finally after 9 long months of pregnancy Emily had our daughter Madelyn Joy Kreuziger. We call her Maddie. This is something that always sticks with me from the delivery. As Emily was trying to push Maddie out she was falling asleep between contractions. I eventually after 3 hours of this had to tell the doctor and nurses that Emily can’t push anymore. There again nobody had really experienced delivery with a person with narcolepsy at our hospital. Finally after Emily having been up for 36 straight hours and all the struggles of delivery they came in with a suction cup/vacuum and were able to get Maddie out that way at 1:41 am. Emily was flooded with so much adrenaline that she was literally shaking. Having said all the struggles Emily had been through this was an amazing moment and experience for both of us to finally get to hold our daughter!

The next thing I remember most being a struggle was Emily attempted for 5 days to breast feed. These 5 days broke her in ways I had never seen before. Emily was just so exhausted that it was taking everything she had out of her. She even got to a point she wanted nothing to do with Maddie. I tell Emily this, that I give her so much credit for recognizing on her own that something needed to change. It’s hard to be the one struggling and actually basically diagnose yourself as needing help. So we had an appointment at the hospital to now switch to formula feeding Maddie. This allowed me to help a lot more. So what we did was each night we switched off as to who had the middle of the night feeding. So now by being able to also feed Maddie it gave Emily a chance to sleep more and took a lot of pressure off of her. Emily also was able to get back to feeling more like herself again. Emily also was able to feel more connected with Maddie now that she was in a better place.

Then also by going to formula feeding Emily was able to start the process of getting back on medications sooner. This again was much more of a struggle than anticipated. For whatever reason after pregnancy Emily’s body didn’t react the same to medications for her Narcolepsy. It took Emily probably a year to find the combination of medicine that would seem to work for her. 

Today we have a going on 16 month old beautiful daughter! Maddie is a bundle of joy! She is a very curious child and is generally always happy and thinks so many things are funny. Maddie loves to climb on things and loves to pull your mask down! Maddie is currently 32 inches tall and 24 pounds. She stretches out 18 to 24 month clothes and is at the 85 percentile in both height and weight! Her head circumference is in the 91 percentile! She has learned how to make many animal noises and in particular her kitty and bear sounds are the best!

That brings us to today. For this upcoming winter I threw out the idea to Emily that  the I-500 would be pretty cool to run! Now Emily can tell you that I’ve been wanting to do that race for multiple years now. I think 2017 was when I first started looking into the I-500 and started thinking of it as a bucket list race I wanted to compete in. The agreement from Emily and I has been that both of our racing efforts be together and not put one’s career over the other. Nothing in the past really lined up to pull it off. In there also was having our daughter Maddie (she was born July 26th, 2019). Anyways, we finally have put enough details together to make this the winter we race the I-500! Here is a cool video from last winter of the I-500 I found on YouTube! https://www.youtube.com/watch?v=Hpn11RNL17c

Emily started to think about presenting the idea of the I-500 to Narcolepsy Network as a fundraising opportunity for them. Being a brain tumor survivor myself, I ran both the New York and Chicago marathons to raise money for the Tug McGraw Foundation. Emily wanted to use I-500 as a fundraiser much like many marathon runners do. So like Emily always does, she found a way to make it happen! Narcolepsy Network is very excited about the opportunity to partner with her to raise funds and the donations are already starting to roll in. 

If you want to make a donation visit this link. https://narcolepsynetwork.org/snowmobiling-for-narcolepsy/

Joel