Monday, March 17, 2014

Fundraiser for the Narcolepsy Network’s Narcolepsy conference

Good morning, and Happy St. Patrick’s Day, dear readers!

Today I wanted to talk briefly about the Narcolepsy Network’s annual Narcolepsy conference, specifically about their effort to raise funds for scholarships to the conference.

For those of you who are not familiar with the conference, it is a conference that brings together people with Narcolepsy and their supporters and medical professionals.  I myself have not been, but I have always wanted to go, and I hope to be their this Fall.

(Even if you are not interested in the scholarship effort, I highly recommend viewing the video on the conference which is on the scholarship effort website because it is the best video on the conference that I have seen.  It is a great introduction to the conference, and the website also contains good information about the conference, for people who are interested.)

This year, the Narcolepsy Network is raising money to fund scholarships to help “give PWNs who otherwise could not afford to come the opportunity to learn from the experts and engage with their peers in an atmosphere of caring and support.”  Their goal is to raise $10,000 by the end of March.  Currently, they have raised $5,315, which is great, but the end of March is fast approaching!

I wanted to share with you a letter I received from the Narcolepsy Network today about the scholarship fundraiser. 

“Dear Ellie,

We have exciting news about our conference scholarship fundraiser.  A very generous family has come forward with a matching gift.  For every dollar you donate in the next two weeks, our matching gift family will donate the same amount, up to $2,000!  For example, if you give $50, they will give $50 too, meaning the scholarship fund receives $100.  By giving now, you can double your money for conference scholarships.

Don't miss this opportunity to help us give those with narcolepsy who otherwise could not afford to come an opportunity to attend our conference in Denver this year. Please visit our scholarship contribution fund page to make a contribution today! With our match gift, your tax-deductible donation, no matter the amount, will go even farther to help make the NN conference a reality for more people.

If you prefer to make your donation by check, please mail your donation to Narcolepsy Network, 129 Waterwheel Lane, North Kingstown, RI 02852 (and put "CSF" on your check).

Thank you to everyone who has already made a donation. We are grateful for your support!

Sincerely,

Eveline Honig, MD, MPH

Executive Director, Narcolepsy Network

P.S.  If you can't afford to make a donation, you can still help. Please share our scholarship contribution page with your friends and family and encourage everyone to take advantage of this exciting matching gift!”

Even if you aren’t interested in the scholarship effort, I would encourage any Narcoleptic who doesn’t already know about this conference to check out the website and learn about the conference, if only so that you know that it’s out there if you should ever want to go…  The video is only 6 minutes long and the it’s only about one page of information.  And who knows, if it interests you, maybe you might want to apply for one of the scholarships in April, right?

On a more personal note, I have recently moved back to the U.S. and am now living in New Hampshire, as my husband and I are getting divorced.  Things are good here though and I’m happy to be back in the good old U.S.A.

God bless!

Thursday, July 11, 2013

Interesting Article on Narcolepsy, Titled “The Mystery of Narcolepsy”

Le Rêve - Pablo Picasso

Good day and happy summer to those of you who still are following my dear blog!

I wanted to share an article on Narcolepsy with you, as I found it to be an interesting read and I thought that some of you might also think so.  The article is titled “The Mystery of Narcolepsy,” from Psychology Today, and I thought it gave an especially good explanation of what causes Narcolepsy and how it is treated, in addition to briefly talking about treatment and sharing a few stories of patients.

Here is the link to the article: http://www.psychologytoday.com/blog/sleep-and-be-well/201304/the-mystery-narcolepsy 

If you have five minutes and you are interested in Narcolepsy like me, you might take a look.

On a parting note, I just wanted to encourage everyone out there who is struggling with daytime sleepiness and other symptoms of Narcolepsy or struggling in general to not give up.  As the article talks about at the end, if you are going through the diagnosis process or struggling to find the right medicine to help you, there are a number of Narcolepsy treatments out there that can go a long ways in helping people feel better and lead “normal” or more normal lives…  And for those of you who have exhausted the medicines that you can take and had to settle for something that might help some but not make you feel as well as you would like, I can identify with how hard that is, and I pray that you would not give up on better days and that you would find better health in the future.

I was listening to a song yesterday that said, “what does not kill me, makes me stronger.”  Remembering these words now, it occurred to me that although it might not be comforting to ponder how one’s current suffering will bring future strength, it is true that the good news about Narcolepsy is that it is not deadly or life threatening.  Although having Narcolepsy can be really hard, it should not give us any fewer days on this beautiful Earth, praise the Lord!  Smile

sunshine

Now we just have to make sure to not let Narcolepsy steal our joy or cloud our perception so much that we can’t appreciate life’s many blessings…  I’m still learning to be grateful for the little things in life myself, but it is important sometimes to be reminded because it is so easy to take for granted life’s blessings.

I hope you are enjoying the warm weather!  God bless! 

Monday, May 28, 2012

Finding what works for you and your body

You wouldn’t think that it needs to be said, but it does: What works for some people just doesn’t work for others. 

It’s great to know lots about how to keep the body healthy, but you also have to listen to your body and figure out what makes you feel best (as well as what is healthy for you).

I feel that it is especially important for Narcoleptics to figure out what works for them because in some ways our bodies work differently than those without Narcolepsy.

Here’s my personal example: I recently have been trying not to eat or drink anything in the morning because I find that doing so makes me feel either tired or sick or both.  For years I have ignored my own observation that eating in the morning makes me feel badly, telling myself that breakfast is so important, etc., but it was only after I actually started getting nauseous after eating these past months that it hit me: clearly my body doesn’t want to eat in the morning! 

It’s been hard for me because I really like breakfast, but I am working on listening to my body instead of just doing what everyone else does and what people say is best.  (I’ve actually talked to multiple nutritionists over the years on the subject, and their response was: breakfast is the most important meal, can’t you eat something?   and that’s just it, no, I can’t.  Or at least, I shouldn’t.)

I’m pretty sure that my strange reaction to food in the mornings is because of my Narcolepsy, but I have no proof that this is true.  However, I also have much more cataplexy in the mornings when I exercise, so I think my body just reacts differently in the morning for some reason.

Anyways, it’s something to keep in mind: what works for “everyone else” might not work for you.  And at the end of the day, finding what works is most important, right?

Does anyone else have any examples they would care to share from their life?

God bless!

Sunday, April 15, 2012

What would you like to find in a book about dealing with Narcolepsy?

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Good morning to all of you, and Happy Sunday!  I just got back from a short vacation in Hamburg, and the weather is so beautiful here in Berlin Smile.  Spring is here!

I was talking with my husband when we were in Hamburg, and we started talking about my writing a book about dealing with Narcolepsy.  This is not a new idea -  it’s an idea that I’ve been tossing around for a number of years now but it’s come up again and I think it might just be something that I would enjoy and that would probably be helpful to some struggling or new Narcoleptics.

Which brings me to where all of my dear readers come in (that’s you! Smile): I was hoping that some of you might be willing to write me a line or two (or more if you want) and share what you would like to see in such a book.  The book that I am envisioning would not be a memoir or a book primarily about me, but rather a sort of “idiot’s guide” to Narcolepsy, with relevant parts of my own story thrown in when I think it’s helpful.

I would especially like to know what topics would be most interesting and helpful to you and other Narcoleptics.

I know that there probably isn’t any money in writing such a book, and that there is a good chance that I would have to self publish it if I wanted it to be published, but money isn’t the reason that I am seriously thinking about a book.  I want to write a book on this for the same reason that I started this site: I know how hard it is to have Narcolepsy and how hard it is to find good information on dealing with it and I want to use what I have learned to help others.

Thank you so much for a minute of your time.  Your comments would mean so much to me and would go a long way towards helping me start this project.  (So if you want to see this happen – by all means write something!)

God bless you all!

Friday, April 6, 2012

A young boy’s experience with Xyrem and sleepdisorders.com

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I was recently asked by Nader Ahmadnia, the webmaster for sleepdisorders.com, if I would be willing to have him as a guest blogger on my site.  As the content of the material was interesting, I agreed, and you can find the short article he wrote below.

“Xyrem Helps Narcoleptic UK Boy Live a Normal Life

A story published by the UK press last month had sympathizers smiling about advances in narcolepsy treatment. Reece Williams, a 7-year-old boy with severe narcolepsy symptoms, couldn’t even kick a soccer ball without falling asleep on the spot. A normal day for Reece consisted of 23 hours of slumber and approximately 25 drowsy falls during the hour that he wasn’t completely knocked out. But after taking the drug Xyrem, Reece’s symptoms have improved significantly.

Xyrem, a medication that claims to help daytime sleepiness and cataplexy symptoms in narcoleptic patients, has caused a lot of controversy among researchers who debate its very high cost. The drug also claims to improve quality of sleep. As of now, the drug is technically only licensed for prescription to adult patients. But Reece, who had undergone a multitude of tests and treatment plans prior to being put on Xyrem, now has the ability to enjoy a normal life.

It took almost two years for Reece and his family to receive a proper diagnose of narcolepsy. He had begun displaying symptoms at age 5 and was becoming increasingly irritable and aggressive. He fell behind at school because he kept falling asleep. His mother worried constantly that a fall might result if serious physical injury. But after countless misdiagnoses, including weeks spent in a hospital while Reece was put on high-dose steroids, a simple Internet search of the boy’s symptoms led to identifying Reece’s rare sleep disorder.

Reece’s parents tracked his symptoms by filming the boy. They noticed that whenever he laughed or got excited, his face would twitch and then he’d fall over sleepily. After taking the boy to a sleep center and letting him stay there overnight to be studied, doctors found that it only took Reece 19 seconds to achieve deep stages of sleep normally reached 40 minutes after going to bed.

Sleep doctors tried other sleep medications before turning to Xyrem, but nothing had worked. Now, Xyrem puts Reece on a 12-hour sleep cycle, and he remains more awake during the day. He still needs plenty of naps—crucial for any patient suffering from chronic daytime sleepiness—but overall, Reece’s parents and doctors are happy with Xyrem’s results. They’ve noticed a better sleep schedule and better quality of sleep, in general, presumably with fewer nightmares and less stress. If this treatment plan continues, Reece is going to grow up adhering to a strict schedule of three doses every night, but at least he will be able to wake up the next morning and kick a soccer ball around with his dad.

Sleepdisorders.com is designed to link sleep disorder sufferers to local sleep doctors and sleep study centers. In addition to our directory of sleep doctors, you can find informational articles related to your unique sleep disorder.”

I was surprised to read this story, as I had never heard of someone taking 3 doses of Xyrem, but apparently it is possible!

Thank you to Nader for the story.  (I myself do not have any affiliation with any sleep website.)

I also wanted to say a few words about sleepdisorders.com, as I checked out the site myself to see what it offered.  Two things on there site sparked my interest.  First, they have a free service where you enter your sleep disorder(s), where you live, and a little about yourself and they will recommend a sleep treatment center for you.   They also have a free service where you can ask a sleep professional a question online and they will send the answer back to you. 

Although I haven’t personally used either of these services myself, they looked like they might be helpful to some of my fellow Narcoleptics.  Let me know how it goes if any of you try out these services!

I hope that everyone is enjoying the spring, and I wish you all a Good Friday and an early Happy Easter!

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(Easter egg trees like this are a classic German tradition.  So that’s your taste of Germany for the day!)

Saturday, March 10, 2012

Narcolepsy in the News: Narcolepsy article from CNN Health

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For those of you who might be interested, here is a one page article on Narcolepsy from CNN Health.  It does a very good job of describing the basics of Narcolepsy, while also incorporating the experience of a Narcoleptic.

Enjoy!

P.S.  If in the future, anyone finds an article on Narcolepsy that they think would be interesting to readers, please feel free to pass it on to me, either in the comments section or via e-mail.  That would be much appreciated Smile.

Sunday, February 26, 2012

A walk for Narcolepsy and sleep awareness

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Good morning, dear readers!  Wow, I can’t believe that February is already almost over… it’s going to be Spring soon?  So that’s why I’ve been seeing so many stores selling daffodils and Spring looking flowers! Laughing out loud lol.
Anyways, I’m a happy camper.  We haven’t had much of a Winter here in Berlin, but I’m more than happy to move onto spring ASAP.
Which brings me to the subject of this post: Sleep Walk 2012.  One of the things I like to do in the Spring is to take walks and admire the many parks here in Berlin.  For those of you who also like walks or are interested in Narcolepsy awareness efforts or both, there is a walk coming up in Washington, DC that you should know about: Sleep Walk 2012.
Sleep Walk 2012 is a walk for Narcolepsy awareness (and general sleep awareness), sponsored by Wake Up Narcolepsy.  It will take place in Washington, DC on March 10, 2012 as part of National Sleep Awareness Week (March 10 is “Suddenly Sleepy Saturday,” a special day dedicated to Narcolepsy). 
The event is free, although you need to register on the Sleep Walk website to participate.  There will also be an awards ceremony for people who have made important contributions to Narcolepsy awareness in the past year.
I heard that at least 65 people have already signed up for the walk, so no worries about being the only one there!
Unfortunately, I will not be able to go, as I live in another country, but if you live in the Washington, DC area, this walk might be something fun to do for a morning, while also raising awareness of Narcolepsy.  I would think that it would also be a good way to meet some people with Narcolepsy and their friends and family.
Even if you can’t go,  you might learn more about what’s going on for National Sleep Awareness Week and Suddenly Sleepy Saturday at the Narcolepsy Network website on the topic.
Enjoy your weekend!
Ellie