Category Archives: Heroes

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I find myself in Las Vegas at the Narcolepsy Network Annual Patient Conference, and I can only wonder why I have not been writing more. Unfortunately, I have drifted away from many of the activities that have helped me manage this condition best. Fortunately, I have moments like this conference to remind me of WHY I need to blog about narcolepsy and its impact on my life. In fact, I even got to attend a session here that featured one of my heroes, the author of REM Runner, THE BEST narcolepsy blog on the Internet. Her session was fantastic because it reminded me that this blog is, first and foremost, my space for coping with my condition. I remain thrilled that others have benefitted from my story, but more than anything, I need to write about my narcolepsy because the disease makes my life difficult.
The other excellent aspect of REM Runner’s session was the room was filled with other bloggers with narcolepsy (BWNs?). It is incredible to know that numerous people with this condition are helping to tell our collective story in cyberspace. And, getting to spend even 75 minutes in person with them is inspirational. Plus, it reminds me that I am not alone in my struggles.
On that note, the road has certainly been difficult for much of the past year. I continue to feel overwhelmed by my life, partly because I am constantly trying to do more than my body wants to allow me to do. And, I have also let some of my health regimen slide. My two goals for the remainder of 2011 are to make my health more of a priority and to begin regular exercise again. Those two items must be a priority for me. Prioritizing my own health will bring numerous rewards, not the least of which is finding some outlets, like this blog, for the constant frustrations that I am feeling. The exercise will be even more important, though, because my physical strength and endurance has fallen precipitously, making every day a little tougher than it should be. Nonetheless, I continue to feel fortunate for the many blessings that I have in my own life. Truth be told, I have a great job that attempts to accommodate my narcolepsy, an amazing wife who constantly supports me, and a wonderful daughter who is doing the best she can to understand my limitations.
Beyond all of that, I am also lucky that I have been able to attend the Narcolepsy Network Patient Conference every year since I found out about it. This year, it is being held in Las Vegas, and while certain aspects of the venue and the organization are grating on me, it is glorious to see old friends and to make new ones. I definitely feel like I am doing the best that I have ever done in terms of getting rest and not overtaxing myself. I also feel good that I am finding ways to contribute without driving myself into the ground. The reality is that I enjoy helping others, but so often give too much of myself away in the process. At least here, I genuinely believe that I am maintaining a good balance. Heck, I am not even beating myself up for blowing off multiple sessions so I can rest in my room.
Thus, as dark as things have seemed lately, I know I am glimpsing some light for the first time in a long time. And, I am certain that I will not be seven months until I post again.

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>Delightful Date

>Occasionally, my wife and I find time to go on a date. Sadly, such an event is frighteningly rare. We did manage to go on a date today, though. It was wonderful! My only frustration is that going out to lunch and seeing a movie wiped me out. Hopefully, we can still have some snuggling and romance tonight. Nonetheless, the chance to let everything else go and to get away with each other was glorious.

Our daughter headed off to a friend’s lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an “inner ring suburb,” the place felt like the main drag of any out state town in Minnesota. It was wonderful!

We decided to eat at Cindy Jean’s. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean’s was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean’s apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean’s does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.

We then headed for the theater. We saw Sam Mendes‘ new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them – my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.

Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.

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>Blog Bonanza

>My excitement went through the roof today. I learned of yet another blogger with narcolepsy. Narcogirl write Confessions of a Narcoleptic. Similar to the other blogs that have come on my radar lately, she approaches her blogging in the fashion that I do. She is using the blog as a place to record her thoughts and her experiences with narcolepsy. When I first started writing mine, I was so disheartened that I only found a few other people writing about their narcolepsy. I certainly love the forums I have found on Facebook and at the Narcolepsy Network site, but I adore the chance to read the more personal reflections that tend to populate narcolepsy blog posts.

I now have fourteen other blogs listed in my “Other Narcolepsy Blogs” blog roll. Not all of them are updated frequently (in fact some have not had a post in a year or two), but it is cool that the list is growing rather than shrinking. The fact that I have added six blogs within the last three weeks is even more incredible. And, a few of those new blogs do post at least once or twice a month. Narcogirl has started off at an impressive pace. As one who has gone through feast and famine in my own writing (one month with 19 posts, another with 3), I think it is great that anyone with narcolepsy takes a few moments here and there to post at all.

I truly see these others bloggers as gifts. The chance to write about my own experiences is phenomenally rewarding in and of itself, but few things benefit me more than the chance to learn another PWNs story. While no PWN has the same story or symptoms or medications, we can all relate to the insane experiences that others have with this crazy disease. Thus, finding other blogs help me to remember that I am not insane. I also love that other PWNs are willing to discuss their condition in a public setting. I hate the idea that I need to hide my condition. I certainly do not “like” my narcolepsy, but it impacts who I am. I don’t want people to feel sorry for me, but I also do not want to deny that I am sleepy most of the time. It IS part of me.

I defintely hope that my list of other narcolepsy blogs continues to grow. I also hope that as more PWNs lift their voices and share their stories that we will all benefit from the expanding awareness that more blogs will bring. Please consider reading some of the blogs listed in my narcolepsy blog roll. It will be worth your time.

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>Many MOONS Memories

>Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.

Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.

I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly “get it.” The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.

I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.

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>Fabulous Friends

>I continue to struggle with my energy, but I had a great boost today. Even though the early afternoon was filled with drizzle and clouds, I found sunshine in a Perkins in Edina! Four of us met there today to do some MOONS planning. While I had many other things that needed doing, I know I made a great choice today. Seeing my friends from the MOONS group made my heart soar. Even better, we actually got somethings done. Typically, we banter and chat so much we rarely get anything decided.

Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks – we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.

As for the “social” ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.

Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don’t even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I “knew” none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!

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>Tremendous Teammates

>I thoroughly enjoyed my four days in Duluth, although the drive home was a tad taxing. We were in snow and on snow covered roads for most of the trip. Fortunately, we got home safely. One element of the entire Duluth trip (that surprised me) was how often I invoked the name of my two teaching colleagues. I know that my attitude and approach to life is significantly better. Simply put, I am coming to terms with what it means to have narcolepsy. That said, though, I know that this year has been one of my best teaching experiences because I work with two amazing individuals.

Both of my co-teachers place their students ahead of everything else. They are full of compassion and truly listen to what students have to say. At the same time, they demand excellence from every students. Both know that students have a wide range of abilities, and they lavish praise upon each one, but want to push each student to her or his best. That means even more work for the teacher, but my teammates know those efforts will make a massive difference in helping these young women and men maximize potential. Beyond all of this, they love to have fun. Our classroom constantly resonates with laughter and joy.

The gentleman who handles social studies recently became a father. I know that he will be amazing as a parent. He has lived a tough life, but constantly looks for ways to learn from his experiences. He is also a tremendous practitioner of sound educational theory. He scientifically approaches every lesson and works to match his material to his students’ developmental levels. Best of all, he holds himself to the high standards that he asks of his students. Justice permeates everything that he does. He even puts his own money on the line to help his students understand the importance of justice.

Our religion teacher is perhaps even more remarkable. She is still in her 20s, but has the wisdom of a 50 or 60 year old. Her calm, sage presence draws students to her. And, she holds each student in her heart and in her prayers. Her warmth and friendliness work in stunning unison with the rigorous demands that she also puts on the students. She pushes them, but also feeds their souls. I know that these young women and men will live significantly richer lives because they had her as their teacher. Best of all, she provides our ninth graders collegiate content in a form they can grasp.

I also adore that both of my colleagues see writing as the most important thing that any of can do in our classroom. In fact I would be hard pressed to say which of us is the most demanding within our grading of the writing. Regardless, our students are getting a great education because we do work together. I feel incredibly blessed to work with these two teachers. It remains a struggle to do even this course with my narcolepsy, but the knowledge that I have these two standing with me gives me strength.

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>Insightful Info One

>My plan is to post on topics from the conference throughout the next few days. I need to do this in small chunks or I will never get it done. Please feel free to use the comments section of each post as a place to ask questions. I feel like I learned something in every session that I attended. Part of the reason the weekend overwhelmed me is that information kept buzzing around my brain. All week, I have been trying to remain mindful of each moment, but the thoughts and insights of the conference continue to bombard me. Hopefully, getting some of them out of my head (and into electrons) will allow me to function a bit better at work and around my house.

The most incredible scientific/medical moment of the weekend was the keynote address. I figured listening to Dr. Emmanuel Mignot would be a powerful experience (he is one of the two leading researchers of narcolepsy in the world. The other is Dr. Masashi Yanagisawa at the University of Texas Southwestern Medical Center). Dr. Mignot heads up the Center for Narcolepsy at Standford. He is once again on the verge of a major break through. Here are the basics from his talk:

1. They are using the Human Genome work and Affymetrix 6.0 Array Set: Genome Wide Association to look for other common variants within the genomes of people with narcolepsy with cataplexy. The Array allows blood samples to be tested against 906,600 Single Nucleotide Polymorphisms and 946,000 Copy Number Variations. Thus, with massive sample groups, a research can find common variants within common disease groups. This same testing is being used for a number of other common diseases (including many autoimmune diseases) like Celiac’s Disease and Irritable Bowel Syndrome. Basically, the researcher wants to find a high p-value.

2. The paper published by Japanese scientists and Dr. Mignot at the end of September found a couple of genes in a study in Japan that had a smaller population sample (222 PWNs w/ C vs. 389 Control subjects). The two genes involved in the common variant both have roles in the sleep cycle. The study was repeated using a Korean group, a Caucasian group and an African-American group. The correlation was present in the Korean group, but not the other two. So that variant is likely only in Asian populations.

3. Dr. Mignot did a much larger study in the U.S. He tested 809 PWNs w/ cataplexy against 1120 Controls (all who had HLA-DQB1*0602 – this is the autoimmune factor that is definitely involved in causing narcolepsy). While Dr. Mignot did not tell us the name of the gene that they found, he did say that they found one. He also said that the protein that it controls is a part of the immune system and works with HLA like a hand and glove relationship. Needless to say, he is extremely excited about this. The p-value was 10 to the 12th power (which is insanely high). He still must replicate the results before he can publish, but he believes that this is a major discovery. While he still needs blood from 400 more PWNs w/ cataplexy in the U.S. to finish the replication, he is also doing a study in Japan with 800 PWNs and 800 Controls.

4. Finally, he has had the chance to work with five PWNs within a few months of symptom onset. As a result, he has done a western blot on them from their liver and found the same triplet of results. The five also all had recent viral infections and corresponding anti-infection antibodies. There needs to be far more research done, but he believes that Immunologists could devise a way to interrupt the disease process/autoimmune response that leads to narcolepsy.

The only part that is hard in all of this is that it is focused on Narcolepsy with Cataplexy. I might have abnormal or rare cataplexy, but am not sure. Even if I do, I am grouped in the same catagory of Narcolepsy without Cataplexy. As a result of that, my version of this disease might be highly different than what Dr. Mignot has discovered. I hope not. He certainly believes that figuring out Narcolepsy with Cataplexy will provide insights into the full spectrum of Narcolepsy. Nonetheless, it is unnerving to think that what I have is MORE complex than what his YEARS of research have uncovered. Still, it is exciting. The part that gives me the most hope is the clear link to some type of infectious agent having a role as a potential trigger. Even the remote possibility that this condition might be connected to my four bouts of Mono and/or my chronic toncillitis and/or my chronic sinusitis is thrilling.

Here is a link to a published Google Doc of my notes – http://docs.google.com/Doc?id=d6qf3b7_613mp98wg8. Folks should feel free to check them out. The talk was amazing. Perhaps the funniest thing is that Dr. Mignot completely seems like the absent minded, but brilliant, professor type. His clothes were fairly rumpled and a friend of mine told me that he reminds her of Dr. Oliver Sacks (whose life story was made into the movie Awakenings – Robin Williams plays the Sacks character, Dr. Sayer). Dr. Sacks is also brilliant, but can’t seem to button his own clothes correctly. I always find it refreshing when “ordinary” (or even odd-looking) people prove to be extraordinary. Dr. Mignot certainly fits the bill!

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