Many narcoleptics, and the people who love them, feel incredibly alone, as they don't know even oneother person who has this exceptionally frustrating condition. This column is dedicated to seeking out the perspectives of individuals impacted by narcolepsy, and sharing them in print, so that we can all feel a little less lonely, and learn from the experiences of others.

This time, I've been blessed with the contributions of two courageous people. The first is James T. Hawes. He wrote because he wants to help others in similar circumstances with some ideas he's developed over years of coping with the symptoms of narcolepsy. The second is an unnamed young woman from Australia, who answered an on-line questionnaire. Her courage inspires me, and I think she'll have the same effect on some of you.

Mr. Hawes is one of those folks who either cannot, or chooses not, to use prescription medications to treat their narcolepsy symptoms. Even though I've found that Xyrem helps me to get restful sleep at night, without hypnogogic hallucinations, and to live a nearly normal daytime life, supporting myself, and fully participating in family activities, I find his suggestions fascinating. I wish that, at least, I'd heard of them back when I was struggling through my most difficult years 1982-1992, BX (Before Xyrem). It seems there may be some science to back up Mr. Hawes' belief in the benefits of exercise for all of us, on or off medications. At the Las Vegas conference one of our speakers, Jerome Siegel, Ph.D., UCLA, confirmed that, in clinical tests, increased activity did seem to improve symptoms of narcolepsy in laboratory animals. I know it works for me!

The second is an anonymous young woman who lives in Australia, and has been diagnosed for only two years. Her frustrations have included difficulty finding the right medications, and finding understanding in some of the people in her life. I'm sure many PWN will relate to these issues and the dignity and perseverance with which she faces them.

This is what Mr. Hawes had to say:

Dear Sharon,

One line in your Spring 2004 column jumped out at me: The sentence where you mention that the South Beach Diet seems to help to counteract your narcolepsy symptoms. This is excellent news! What I've discovered myself is quite consistent with it.

I've had narcolepsy all my life, with the first symptoms among my earliest memories. Childhood was at times a 3D, total immersion, "Harry Potter" experience. If I entertained supernatural beliefs, I suppose I'd be a shaman by now. (No thanks. The real world satisfies me just fine.) Today, due to a careful diet and exercise (and luck), I require no medication.

My own diet isn't South Beach. Yet I'm interested in South Beach's classification of carbohydrates as either low or high-glycemic. I need to explore that idea more. I normally avoid carbs during the day, as they bring on cataplexy and sometimes narcolepsy attacks. Despite my "mild case" of narcolepsy, these attacks can be devastating. My diet also avoids high-fatty foods such as steak, or double jeopardy, such as pizza. I eat a lot of soy products. These soy products include milk, bacon, cheese, bun-less burgers and yogurt. My breakfast protein source is fish, instead of eggs. My exercise routine must be both daily and rigorous. Along with the diet, it follows "healthy heart" guidelines. The exercises keep me in reasonable shape. They also eliminate many audiovisual and tactile distortions.

At night, when I want to sleep, I have the perfect solution: I eat the carbohydrates and fat that I've avoided all day: Soy yogurt, peanut butter, toast and Gatorade! I do this right after exercises and a hot shower. Within minutes, exercise, exhaustion and sleepy foods send me off on a very satisfying nap. The decline is so rapid that I don't have time for hypnagogics. The only care I must take is to add several blankets in winter, and keep cool in summer. Narcolepsy really seems to disrupt the body temperature, and sleep causes body temperature to drift anyway. My temperature seems to really spike, even during wakeful hours.

I've developed other coping methods. None is a cure, but if you're interested, I'll gladly send more. These days, I'm out of work and not a paying NN member. Maybe I can help the organization anyway, by sharing a few helpful hints.

Yes, I imagine we may print more of James T. Hawes' home remedies in upcoming newsletters! We're grateful for his contribution, by way of sharing his coping successes. If any of you readers try his approach, or have developed a coping strategy of your own, we'd love to hear from you about your results.

Now, here's our anonymous PWN from Down Under, in her own words, as well. Her determination and optimism are compelling. We've slightly edited a few phrases to please the spell check program, and shortened her answers a bit out of consideration of space in the newsletter.

1. When did you first notice symptoms of Narcolepsy?

Towards the end of 2001, when I was 16, I was diagnosed with clinical depression. One of the main reasons was because I was constantly sleeping. The uncontrollable sleep attacks happened all the time, and school became a waste of time because I slept through most of my classes. The sleepiness was the only symptom I had at this stage. Thank God for that, because I struggled to complete that year of schooling.

2. When were you diagnosed with Narcolepsy, and what were the conditions that led to the discovery/diagnosis of the condition?

Looking back, I am now uncertain whether I was suffering from depression at all, or whether the thought of having it was put into my mind and perhaps convinced me I did, but I've always thought that I got narcolepsy from stress, and some emotional anguish I went through in my earlier childhood, as no one in my family has ever had anything like narcolepsy before. I had to go through 3 referrals from one doctor to the next, to the next; a frustrating cycle that took months, before I finally saw my current doctor, at the chest clinic here in South Australia who then put me in to have a sleep study ahead of the waiting list due to my circumstances of beginning my final year at high school. After my sleep study I was diagnosed straight away, and started on medication around February in 2002, so I was lucky in the fact that I had narcolepsy for about 6 months before I was diagnosed as opposed to people that suffer for years without knowing the reasons why.

3. Please describe, briefly, how Narcolepsy disrupted your life before and after diagnosis.

Beginning the most important of my schooling years was complicated by having to ultimately learn a whole new way of life as well as realizing I had to start accepting what I had. It came to the point where my sleepiness and inability to finish assignments on time were mistaken for lack of effort or laziness and I was forced to drop 2 subjects and complete year 12 over a two-year period. Adjusting to medications was difficult, and the first I tried didn't have much affect, so then changing to another made the process even harder and more frustrating. The symptoms have only gotten worse over time, to the point where I can't sleep in my own room most nights. The hallucinations I experience are too intense and too frightening, and although its not an unexpected event, sleep paralysis is never something I want to get used to, so I sleep in my mum's room most nights. I try not to let narcolepsy disrupt my life too much. I made a promise to myself a long time ago to never let life get the best of me, and I see narcolepsy as just another part of my life that I have to learn to adjust to, no matter how long it takes.

4. Do you work? If so, what kind of work, self-employed, shift work, professional, etc?

Finding a job was a challenge I was determined to take on even though I knew it would be hard. I went through conversations in my head of explaining to an employer that I had Narcolepsy and the likelihood of being employed was pretty small. I finally found a job that allowed me to work short shifts at a library in the city and I've been there for about 2-3 months and I love it. I didn't tell my boss about N until he gave me three days of 8-hour shifts and he wondered why I always wanted to go home early. I had a few blackouts. My doctor told me something about automatic behavior and I knew I was kidding myself if I thought I could work regular hours. It just wasn't realistic. I knew it was best to tell my boss about Narcolepsy, and because he had seen how hard I work, it wasn't a problem. Communication between us as to what my capabilities are made everything work out fine. Sometimes I still get a little hazy for a half an hour or so, but I just sort of hide in between the shelves and re-file books or something.

5. Are you married, have children?

I'm only 18, so no, I'm not married. In relation to personal relationships though, Narcolepsy has sort of allowed me to see how genuine my friends really are and who doesn't really care that much at all. I can't get my driver's license, and catching buses is a disaster most of the time (a lot of walking when I've missed my stop) so my closest friends make the effort to come and pick me up, or meet me half way, or call me on my mobile when I'm on the bus to keep me awake. I don't currently have a boyfriend but in the past it hasn't really been an issue at all. The friends I surround myself with tend to be compassionate, understanding people. My family is great, especially my mum, who often tells me how sorry she is that I have Narcolepsy, like its her fault or something. She always makes sure I've remembered my medication or asks me if I need to be woken up if I fall asleep, and what I often mistake for nagging, is just love and caring about me a lot. I guess you could say that she is my strength. you use to get through the day and still achieve/complete tasks, accomplish things. Having only had Narcolepsy for 2 years, I haven't really found what I would call a comfort zone with Narcolepsy, and because it seems to be progressing rather than improving, developing any sort of routine has proved difficult for me. I take naps during the day while I'm catching buses, which I do a lot, and I think that the naps help. I try to avoid doing one task for long periods of time. Drawing portraits is one thing I do a lot of, and I've had experiences where I've sort of fallen asleep but continued to draw and when I snapped out of it I'd ruined all my hard work! So I take breaks or do other things in between to try and keep my mind fresh and awake. "Frustration" is how I sum up Narcolepsy, for me.

7. Contribute any other information you feel may be useful to our readers.

The worst part of Narcolepsy by far, is the frustration and agony being intensified by the misunderstanding of people in my life. Lack of understanding is the one thing that has made dealing with Narcolepsy a heartbreaking task. The number of times I've had people say to me, "so what? You get tired a lot, big deal." The assumption that I should just be able to fight off the urge to sleep makes me so angry, and although sometimes I think it can be a good thing when people play down how bad having Narcolepsy can be, I wish that they could still appreciate it's not something you just sort of have and can deal with easily, like the flu or a headache. When people tell me they wish they had it and how awesome it would be to be able to sleep whenever they wanted, I just laugh and walk away. Explaining Narcolepsy is something I seem to have given up on with a lot of people. Narcolepsy is part of me, but it doesn't make me who I am. Although I am restricted in certain ways as to what I can and can't do, I refuse to let it control me or shape my life. Determination, courage and persistence are things we all need, especially PWN, and I am determined to do whatever I want in life, not despite having Narcolepsy, but IN SPITE of it! Narcolepsy may force me to take a different path than someone else heading in the same direction, but that path is still going to lead me to my goals, and no matter how frustrating and how disheartening it can sometimes be. There are only two ways to approach life, as a victim, or as a gallant fighter. You must decide if you want to act or react. A lot of people forget that.

Yes, a lot of people forget. We appreciate the reminder. The question of what may be the "right" medicine, if any, for each, individual PWN is a difficult one. The problem of assuring that every PWN has access to the medication they need is something we care about. We hope to address these issues more fully in future articles. Elsewhere in this newsletter, you will find a brief survey about medication. IF YOU OR YOUR MINOR CHILD HAVE NARCOLEPSY, PLEASE COMPLETE THE SURVEY. Send it to us by October 15, 2004. Please take the time to assist other PWN by sharing what is working for you and what is not. Together we can work to improve the quality of life of all people impacted by narcolepsy. Thank you.

Finally, I want to honor another friend who was a gallant fighter. Harold Poertner's assistance dog, Dancer, passed away in May 2004. He'd been a faithful companion for many years, providing exactly the assistance that Harold has needed. He also helped the entire narcolepsy community by appearing on television to increase public awareness of narcolepsy, and by accompanying Harold to at least one of the Narcolepsy Network's annual conferences, where he participated as "speaker", of sorts. He learned to protect Harold from wellmeaning folks who tried to administer CPR during cataplexy attacks; he licked Harold's face to waken him or bring him out of a cataplexy attack. As I recall, he even placed himself in between Harold and the floor to break the fall when cataplexy brought Harold down, and he noticed when Harold was sleepy at the wheel, nudging him till he'd pull over and take a nap. Dancer was lying beside Harold's bed early one spring morning when he got the call to travel on to his next assignment. He will be missed here.

If you have a story to tell, or have learned a good way of coping with your narcolepsy, or that of a loved one, please write to:

Snail Mail: Sharon Fitzgerald
11824 West Belmont Drive,
Littleton, CO 80127
Phone: (303) 932-0993
NEW E-MAIL ADDRESS:
sfitzgerald@narcolepsynetwork.org.
(We publish using your name, or anonymously, as you prefer.)

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