Member of the Month
Each month Narcolepsy Network highlights a Member of the Month. If you would like to nominate a Narcolepsy Network member who is helping raise awareness of narcolepsy or doing work to benefit the narcolepsy community, please contact us at email@example.com. Deadline to submit a nomination is the 20th of every month for the next month.
Congratulations to our Members of the Month and thank you for your good works!
Our May Member of the Month is Keith Harper, who was one of our great volunteers for the DREAM BIG! NYC Walk.
Hi, I’m Keith, and I’m a designer and digital maker based in New York. I run my own design studio, a co-working space, and build software with my wife Jana. In 2011 we launched our first product, a digital portfolio called Well Crafted. Jana and I are now working on our second startup (TruBalance – a crystal ball for your wallet). I’m an avid runner, vegan, and I love to doodle.
I was diagnosed with narcolepsy in my early 20s, and fortunately I don’t suffer from cataplexy symptoms. After years without meeting any other narcoleptics, I started the New York Narcoleptics (or NYZ for short) in 2013 after moving back to the city. Since then, I’ve gotten to meet quite a few folks with narcolepsy, and getting involved with Narcolepsy Network has been a fantastic experience. I’m looking forward to meeting more fellow narcoleptics this year!
My symptoms first started affecting me in high school – I remember having trouble staying awake when I was a senior. I would wake up with my head in a notebook full of doodles. When I was in college, things got progressively worse – I couldn’t stay awake for an entire class, and the fact that I was in Army ROTC made things all the more difficult. Standing in formation was the worst. One time I woke up in class to my friends exchanging money – they had taken bets on how long it would take me to fall asleep. At this point you would think someone would say “Keith, maybe you have narcolepsy?” but that wasn’t the case – there isn’t much awareness of the condition.
After college, I was in the Army National Guard briefly when I met Jana. She pushed me to go to the doctor, after I fell asleep while talking to her multiple times. After my diagnosis, I was given a medical discharge, started taking medication, and things started getting much better. I finally had an explanation for situations in which I’d be nodding off, whereas before I could only shrug my shoulders.
Things are much better now, and it’s exciting to see research being done on narcolepsy. I’d like to give a big thank you to Narcolepsy Network for connecting us all together!
Our April Member of the Month is Leslie Weber. Leslie is Chief Development Officer with the Randall’s Island Park Alliance. Her daughter Clea is about to complete her freshman year in college, and was diagnosed with narcolepsy with cataplexy in her senior year of high school after several years of undiagnosed symptoms. Leslie lives in Brooklyn, New York with her husband, two cats, and intermittently her two college aged children.
Leslie worked very hard to make the first New York City walkathon on April 27th a huge success. Her experience in NYC with parks, running events and her passion to help people with narcolepsy and to raise awareness made her a fabulous addition to the NYC walkathon committee. We hope to see Leslie even more involved with NN in the future.
Our March Member of the Month is Pam Thomason.
I am 64 years old. I developed narcolepsy at the age of 17, but I was not diagnosed with this disorder until 1999, some 33 years later. In retrospect I believe my symptoms began between my junior and senior year of high school. That summer I remember gaining some 40 pounds, for no apparent reason. I was active in several school sports and my eating habits hadn’t changed. This was followed with sleepiness, tiredness, fatigue and brain fog. I think that weight gain may be an over looked symptom of onset narcolepsy.
Like many of us, I had never heard of narcolepsy and didn’t think that sleep was a disorder. I thought it was just normal. I made excuses for my sleepiness, after all I was a young active adult. College was difficult, and my goals seemed unattainable. I dropped out, got married, and had three girls. I went to work as a loan officer for a bank for over 10 years, finding it so difficult to stay awake at a desk. Later took another job in retail as a merchandise manager, which was much better, keeping me on my feet and busy. I don’t recall my knees buckling until I worked at this job and then I began falling to the ground. I knew then I had a problem, but really didn’t realize it was part of a sleep disorder.
After falling asleep at the wheel and falling asleep while babysitting my granddaughter, my husband insisted that I talk to my doctor. Even my PCP didn’t seem that concerned and of course I only talked about my sleepiness and fragmented nighttime sleep, not wanting to reveal anything about my vivid dreams, sleep paralysis, and the noises that weren’t really there, for fear of him thinking more along the lines of a mental illness. He did send me to the sleep lab thinking I had sleep apnea. My nighttime sleep was pretty messed up, but no sleep apnea. I was asked to stay for the MSLT, which revealed my diagnosis of narcolepsy.
The sleep lab’s pulmonologist put me on Ritalin and Prozac and later changed my meds to Provigil. I had a difficult time adjusting to the drugs and the antidepressants didn’t seem to help my cataplexy at all. The drugs came with side effects, but I continued with the Provigil.
I returned to college thinking I could finish nursing school, but even with the drugs and, I still couldn’t maintain wakefulness long enough to make it through my classes. I worked as a CNA at the hospital in the Minor Care department and kept my secret about narcolepsy, until I had a cataplexy attack at work. The ER doc came running to the nurse’s station as I lay on the floor. I had to reveal that I indeed had narcolepsy. I was amazed at that point that most of the nurses I worked with did not know anything about narcolepsy. The ER doc had never dealt with anyone that had this sleep disorder and had never witnessed a cataplexy attack. It was then that the light went off and I had to be a part of educating people, especially those in the health care field about this disorder.
I decided to retire in 2005. I was making too many mistakes on patient charts (that automatic behavior that takes over) and you have no recollection of doing it. Since my husband had been retired for a few years before me, we decided to travel. We sold our house and bought an RV.
We wintered in Arizona for about six years and there I had the opportunity to see Dr. Lois Krahn at the Mayo Clinic Sleep Disorders Department. I was absolutely amazed at her knowledge of narcolepsy and finally felt I did not have to look for validation of my disorder. I no longer take any meds and just do my two to four naps a day.
I began to search the web and read all I could about the research on narcolepsy. I printed out the materials and saved them for when I had my doctor’s appointment. At first my PCP, just smiling and rolling his eyes, accepted my gifts. I was the one and only narcolepsy patient in his entire career. He didn’t feel at all comfortable dealing with my narcolepsy. After a couple of years and at my last annual physical he thanked me for all the research I had bestowed on him. He was at an primary care physicians convention and the speaker read a list of little known symptoms of diseases and he was the only PCP there that had the correct answer for narcolepsy with cataplexy.
For so many years I kept myself away from any interaction in groups or activities because of my narcolepsy, but now I look at those social events as an opportunity to educate those around me. My hometown of Lewiston, Idaho has a summer event called “Alive After Five,” which closes the downtown area streets once a month for booths including local services, food vendors, those like myself that have crafts to sell, and plenty of live music. I have been an avid quilter for 40 years and this was a good opportunity for me to get involved in my craft. I usually rent a booth for three of the months to sell my quilting projects and I always have plenty of your narcolepsy pamphlets to give out along with a little speech about my having this disorder and if people are looking for a good cause to donate to, Narcolepsy Network is a great one.
A few years ago I began going to schools and talking to principals, counselors and school nurses about narcolepsy. I sometimes give quilting classes at a local quilt shop and always bring up the subject of living with narcolepsy. During the summer months my husband and I volunteered for the Army Corps of Engineers as park hosts and I even did one of the Corps monthly safety meetings, using my Power Point of course, on the importance of sleep related to safety in the work place, and some information about my sleep disorder, narcolepsy.
Those from other states that petitioned their Governors to claim Narcolepsy Awareness Day this year inspired me to do the same for my state of Idaho. The Proclamation is only the beginning, so you have to still get the word out. I contacted my local newspaper and talked with a reporter for about an hour and a half. They did put a small article in the paper, I would have liked to seen more about the disorder, but it did encourage people to go to Narcolepsy Network for more information. Another paper in southern Idaho picked up on the article and so did the Boise Weekly. I also made posters and took them around to our sleep lab and local hospitals and schools. Next year will even be better. I hope to have a walk for awareness with a little help from my friends at Narcolepsy Network.
Our February Members of the Month are Kevin Gonzales and Megan Phillips. Kevin is a junior studying sociology and political science at Oklahoma State University. He and his future wife, Megan, started dating a year and a half ago. She will be graduating from OSU in May.
With symptoms starting around the age of 10, Megan finally got to see a sleep doctor in August of 2012. Even though Megan knew something was wrong, she was still surprised to hear that her diagnosis was narcolepsy. She has tried several medications but is still searching for the right combination.
After Megan was diagnosed, she was worried that narcolepsy could cause a chasm in their relationship. To show her his love and support, Kevin decided to start a benefit concert to raise awareness and funds for Narcolepsy Network. The concert was given the name “Dream Big Concert.”
The concert planning began back in October. Using his contacts of talented students, Kevin gathered a collection of 5 student groups who agreed to perform at the concert in an acoustic setting. Megan’s sorority (where she is serving as Vice President), Omega Phi Alpha, assisted Kevin in the production planning, mainly in the pertinent area of advertising by passing out flyers around campus, as well as selling many tickets themselves.
With the help of a blog, Facebook events and pages, selling tee shirts online, campus advertisements, selling tickets to friends, and having some support of family and friends, among other things, the Dream Big Concert was able to raise over $2,000 to benefit Narcolepsy Network. Held on February 15, 2013, the concert was a huge success and had a turnout of over 250 audience members.
Another key factor of the Dream Big Concert was raising awareness of narcolepsy for friends, family and the OSU community. Dr. Eveline Honig, Executive Director of Narcolepsy Network, was able to fly out to the event and spoke about narcolepsy to the audience. Narcolepsy Network also provided informational brochures, awareness bracelets, and plenty of support.
Our January Member of the Month is Nicole Jeray. Nicole has been golfing professionally since 1994 and she is currently ranked 607th in the world. She uses her visibility as an LPGA golfer to raise both awareness and money for narcolepsy. Nicole created the Swing for Sleep campaign in 2011. She gathered sponsors who pledged a donation for each birdie and eagle she makes on the LPGA tour. In 2012, Swinging for Sleep raised more than $37,000!
Nicole was diagnosed with narcolepsy in 1996, and she attended her first NN conference in 2000. “After attending my first NN conference, I finally began to understand narcolepsy. I found new ways to deal with this debilitating disorder,” she says. “As I watched the entire audience sleep through the conference, I realized I was ‘normal.’ I am so very grateful to have NN.”
Nicole manages her narcolepsy with medication, but finds she must also follow some rules to perform at her best on the LPGA tour and in her everyday life. These are: drink lots of water, limit carbohydrates, stay away from sugar, eat small meals more often, schedule a nap before important activities, don’t over schedule myself, stay away from alcohol, and not have important discussions when sleepy or after 7pm.
Currently Nicole is enjoying the off-season in Augusta, GA and preparing to hit the road for LPGA tour. She will also launch the 2013 Swinging for Sleep campaign at the RR Donnelley LPGA Founders Cup in Phoenix this March. You can learn more about Nicole and Swinging for Sleep at Nicole’s website