2013 Featured Members
Brianna MacLeod Espana
Brianna has been a NN member for about three years and she was a great help in keeping the registration desk running smoothly during our conference in Atlanta. The 2011 conference in Las Vegas was her first, and getting to help new members and meeting new and old friends is her favorite part of the conference experience.
Brianna and her husband Romeo live in Dallas TX, and they are the proud parents of three boys, ages 8, 6 and 2. Romeo served in the military for five years, and Brianna was a volunteer Ombudsmen for his command. In October 2008, Romeo was diagnosed with narcolepsy and was then medically discharged from the military. For the next several years, Brianna was the primary breadwinner for her family until recently, when Romeo found his dream job as a hardware engineer at a prominent tech company in Dallas.
Brianna was diagnosed with idiopathic hypersomnia in March of 2013, and she is doing well. She says, â€œI am lucky in a sense because I already knew what kind of life I can still have with IH and our family is already set up for this kind of life.â€
NN is lucky to have Brianna as a volunteer and we look forward to seeing her again soon!
Laura J. Evert
Laura is a long-time Narcolepsy Network volunteer and recipient of our 2013 Ruth Justice Nebus Volunteer of the Year Award. Laura has filled many roles including serving on the Board of Trustees, providing artwork for the Creative Corner section of The Network, our quarterly member newsletter, and presenting session at many conferences, including this year when she presented â€œFear No Art: Dream Sleep and Creativity.â€ This year Laura also coordinated the art show at our conference in Atlanta, and raised money to support the show through an online fundraising campaign.
Laura is the founder of N[Art]: Narcolepsy Art, a grassroots effort to educate the world about narcolepsy and the importance of sleep through continually evolving creative works and projects. Founded in 1999, N[Art] has grown into a free-spirited community that strengthens social support and connection among those with narcolepsy through shared experience while also encouraging sleep advocacy.
Communication through art and creative projects, especially self-expressive works by persons with narcolepsy, can help educate the general public as well as those directly affected by this sleep disorder. It can be bring knowledge, comfort, and understanding to an often misunderstood and widely undiagnosed life-long illness.
Visit N[Art]’s Facebook page at https://www.facebook.com/narcolepsyart to learn more.
Did your hand ever come alive and start talking to you? What would you say to your hand if it did? This is exactly what happened to Nicole Cortichiato. She was 16, not diagnosed yet, when she started having hypnagogic hallucinations. She wrote down her story, â€œThe Independent Handâ€ and shared it with PWNs at this month’s conference in Atlanta. The story is about being independent and adapting to change, something Nicole continues to make progress with.
Nicole is inspired by her narcolepsy and lets the creativity flow from all her crazy dreams into her writing. Sometimes, people even think she’s weird when she asks themâ€¦â€œWhat kind of bunny ears do you have? Do you even know? Think about it. Would they be floppy, spiral or lightning? Or maybe they would be skyscrapers or puzzle pieces or trees.â€
â€œWhat Kind of Bunny Ears Do You Haveâ€ is Nicole’s second book and you can download it free as an ebook on Vivlio, through Great Hills Publishing. Nicole’s hope is to inspire others to use their narcolepsy as a tool to create. She started writing just two years ago and is an active member of the organization, Imagine Art (imagineart.net) where she naps and plays. Find more about Nicole and her books on her website.
My name is Fran Rosen and I am 62 years old. I was born and raised in New Jersey and lived there until I moved to Delray Beach Florida in 2012. I share my home in paradise with Buddy Rosen, my 14 ½-year-old adorable mini poodle who I rescued 4 1/2 years ago. Actually, I think we rescued each other!!! I am also the very proud mother of my 39-year-old son Elias who still lives in New Jersey. Elias was diagnosed with Juvenile Myoclonic Epilepsy shortly after his 15th birthday. He started having seizures just after turning 13. So there I was a 36-year-old single parent (I was divorced when Elias was 5 years old) terrified for my son and living with my own terrifying secret.
I graduated high school in 1969. I left college after one semester and worked as a bank teller until I was married. For the first five years of Elias’ life I was a stay home mom. When Elias was nine I woke up in the middle of the night with an epiphany. I wanted my obituary to say I was a college graduate! Six years later I graduated Magna Cum Laude from Kean University with a BA in Sociology. I was so happy, proud and totally exhausted. Now, I could change jobs and stop being that person who everyone loved to hate. For many years (I admit) I was that person who stood in the aisle of your favorite department store and sprayed perfume on you as you tried to run away from me. I didn’t complain because the money and the hours were great. I could fit in my daily naps. Didn’t everyone do that?
My all time favorite position was working for the 6th largest pharmaceutical company in the world as a sales representative. I adored that job. Two years ago I was laid off after a 14-year career. Today I can say I am a happy, proud successful, retiree from that company. For me, that accomplishment is more than huge it’s almost unbelievable! It’s almost unbelievable because within two years of starting my career there I was diagnosed with narcolepsy and I was almost totally disabled.
Remember that terrifying secret I lived with for almost 19 years? Well that turned out to be sleep paralysis and then in my early 30s I started having laugh attacks when I would stop breathing and my jaw would drop. I thought I was having mini strokes and many nights I had hallucinations which at first I thought was my father coming to me from the other side. By the time I was 48 and totally perimenopausal, my life was in a tailspin and I was a basket case thinking I’m crazy and on the verge of being committed. I was having uncontrollable sleep attacks in the car, during meals, on a golf course at sales meetings and within 3 hours of waking up every morning. Then there were days I couldn’t function. I just needed and wanted to sleep all day. When I wasn’t sleeping I was in a fog. I had trouble focusing and remembering things. My colleagues would later tell me that they always knew when I was drowsy because my facial expressions changed. I was lucky because I called on many pulmonologists. One day I noticed some brochures including one about narcolepsy. As I read it I started to shake oh my G-D this is me I could have written it myself. So at 48 and after a consultation with the doctor and two sleep studies I was diagnosed with “classic” narcolepsy with cataplexy and put on adderall and methylan ER.
I thought life would be good again. I was so wrong. Every day was a struggle and so stressful. I was constantly on the verge of panic because I was always afraid my window to do what I needed to do would not be open long enough. To complicate matters every day was and is different. Day by day I felt my self esteem chip away. No one including my family and friends understood. At work I was accused of faking it to get out of things, accused of doing drugs, lying, and was forbidden to mention narcolepsy to anyone during my work day. I was reprimanded for using narcolepsy so my doctors would feel sorry for me and prescribe my drugs. I was told I was stupid and questioned did I really graduate from college. Day after day I was embarrassed or felt ashamed. I was angry sad and alone. Then the day came I could no longer fight it. I had to give my life to narcolepsy. Narcolepsy was in control. Narcolepsy controls how long I can shop, if I can drive, how long I can talk on the phone, read a book, if I can go to the party, and how long I can stay at a meeting. Today my life is a little easier because I am not working. Every day is still different and every day I know narcolepsy is and will always be in control. I think acceptance is very important. I think young and continue to be very active. I guess I should say as active as I can be. My next goal is to work with NN and my physician to start a support group in South Florida. I’m very excited!!!
When I heard about the meeting at the FDA I knew I had to go and I knew I had to be on the panel. I get it that I probably will not reap from the benefits of the FDA initiative or future drug development and that’s very ok. I needed to be on the panel because for me it is totally unacceptable that anyone else suffer and live with that terrifying secret even for five minutes. Can you imagine how awesome it would be if any of my comments indirectly help someone with narcolepsy?
Thank you too to the FDA. Attending that meeting was probably one of the best experiences in my life. Prior to the meeting I never met another person with narcolepsy. I’m not sure what I expected but it turned out to be absolutely incredible. It was validating, emotional and heart wrenching.
Now I can’t wait to go to Atlanta!!!! See you there!!!!
Patricia A. Higgins, RN
Patricia received a BS in Nursing from The Catholic University of America, Washington, DC in 1980. She worked for 20 years as an Emergency Department nurse in New Jersey and Massachusetts. She considers her most ambitious and treasured accomplishment raising three wonderfully dynamic sons. This past year she enjoys her new role as a Grandmother. She also enjoys international travel, quilt making, and volunteering for NN. Currently, she lives in Moorestown, NJ, with her husband of 33 years.
In 1998, Patricia was diagnosed with narcolepsy after eight years of searching. She has been a volunteer with Narcolepsy Network for several years, and served on the Board of Trustees as Vice President in 2007-2008 and President from 2009-2011. She has returned to the board as a trustee this year.
Working with NN has been extremely rewarding for Patricia. It has allowed her to speak up for her and for others diagnosed with narcolepsy. She believes that listening is just as important as speaking. Chronically ill patients are often most vulnerable, disenfranchised, under-funded and often forgotten. Says Patricia, â€œThe support NN provides is tremendous. Together we can assure that the future of NN continues to reach others diagnosed with narcolepsy or idiopathic hypersomnia.â€
She adds, â€œIn writing this history, a huge wave of emotions surface and makes me feel vulnerable and unsure all over again. Years of reflecting on unusual symptoms, falls to the ground, hallucinations, automatic behavior, and extreme sleepiness, evolved into something called narcolepsy, a neurologic sleep disorder. I am resentful of narcolepsy being classified as a mental illness, though I positively believe the mental component treatment is a huge part of successfully living well with narcolepsy.â€
Patricia has written several articles about living with narcolepsy including My Story: Living with Narcolepsy for the American Medical Association (http://virtualmentor.ama-assn.org/2004/11/mhum2-0411.html). She also wrote about the patient perspective of living with narcolepsy in Is Narcolepsy a Mental Illness? My Story, which was published by Craig Lecroy, a professor at Arizona State University. Patricia was also interviewed about narcolepsy by the New York Times in 2009.
My name is Tam Kozman. I was diagnosed with idiopathic hypersomnia (IH) in 1998; when full-blown cataplexy set in several years later, the diagnosis was changed to narcolepsy. At that time, there was no local support group here in San Diego. I didn’t want anyone to have to go through a life with narcolepsy or IH alone. Because my symptoms were being relatively well-managed, and because I had the luxury of not working at the time, it was a simple case of â€œIf not me, who? If not now, when?â€ So I helped found The Narcolepsy Network Support Group of San Diego County (www.sandiegodreamcatchers.org). We have been meeting for more than 10 years now!
Our group holds informal monthly meetings, providing support and resources for individuals with narcolepsy and related sleep disorders, their friends and family, and all interested members of the public. Every July we hold our annual barbecue. It is always especially gratifying because friends and family turn out, too.
At the barbecue this year I watched as others found that â€˜safe’ place where they were the normal onesâ€¦ One of the women said something I found particularly revealing, that this had given her the opportunity to begin sorting out which parts of her personality were uniquely her own traits, and which parts she shared with others simply because of having narcolepsy. Her very supportive husband also got to find out how much of his wife’s â€˜funny’ behavior was actually normal for us.
This year, we had 22 people including eight from the Los Angeles area â€” a two and a half hour drive. We were happy to have two new people who had never before met another person with narcolepsy face-to-face!
Face-to-face support on a regular basis is extremely important to our well-being in every way. If you do not already have a local group, starting one is much easier than you might think:
First, ask NN for a list of people in your area. Next, choose a place. If there is a community center or a library that will let you hold meetings free of charge, terrific. Otherwise, a Denny’s or a small coffeehouse will work, as long as they don’t mind you hanging out for a while.
Then, pick a date. Weekends seem to work well. We hold our meetings on the fourth Saturday of the month from 2 to 4pm. What’s important is consistency; it needs to be easy for people to remember when the meeting is. And finally, start calling folks — they are usually very happy to hear that a group is being formed. Just let them know when and where, and you’re in business! Of course, an ad in a free local newspaper and notices on Facebook and other social media will help as well. Narcolepsy Network will also post meeting information on their website and social media.
I also maintain a Facebook page called â€œNarcolepsy Awarenessâ€ (https://www.facebook.com/NarcolepsyAwarenessEducationAndAdvocacy). There, I share reliable, up-to-date information, and I encourage everyone to promote narcolepsy awareness. I believe we have a better chance than ever to educate ourselves and increase understanding. Ideally, this will facilitate earlier diagnosis and improve access to safe and effective treatment for all individuals with narcolepsy and related sleep disorders.
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!
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.
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.
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 â€œDream Big Concert.â€
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.
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