Tag Archives: narcolepsy

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Seeking Support

Posted on November 28, 2012 by CVCinfo

Whether you’re newly diagnosed with a condition, or have been living with it for years, getting the support you need is crucial to maintaining your best healthy life, both physically and mentally.  There are tons of ways to participate in support groups, whether it be through an actual physical get-together, online meetings, or even actively participating in message boards.

The benefits of support groups are obvious – being in an environment in which other people understand you and can share helpful advice and motivation is always going to be an aid, however it’s important to see how this engagement can benefit your personal relationships.  It can be truly difficult for someone to give the support they want to a person with a chronic illness, because they don’t truly understand or know what to say.  And it can be equally hard for the person affected to really share in words what is going on in their minds and with their bodies.  Going to an outside source of support can create a better bond between the caregiver and the person who is ill.

Often times, people are hesitant to go to support groups because they feel what they are going through is too personal or intimate to share with a room full of strangers.  So, if you’re feeling hesitant, think about the benefits of just going and listening.  It can be more beneficial than you may believe to just be silent for an hour and soak up what others are saying.  And if going to a support session seems like you are relinquishing some of your independence, just remember that everyone needs a helping hand sometimes, just don’t be afraid to take it.

Below are some great resources for support groups from some of our friends in the rare and chronic disease community.  Also, don’t hesitate to ask your doctor or medical professional where to look.

Pulmonary Hypertension Association
Pulmonary Hypertension Central
MD Junction Pulmonary Hypertension Online Support Group
Daily Strength Pulmonary Hypertension Online Support Group
Pulmonary Hypertension South Africa

Pulmonary Fibrosis Foundation
Daily Strength Pulmonary Fibrosis Support 
Coalition for Pulmonary Fibrosis
MD Junction Pulmonary Fibrosis Online Support Group

Narcolepsy Network
Daily Strength Narcolepsy Online Support Groups
Narcolepsy Online Support Groups

Huntington’s Disease Society of America
Daily Strength Huntington’s Disease Online Support Groups
Huntington’s Disease Lighthouse Families Online Support Groups
Huntington’s Disease Advocacy Center Message Boards 
Huntington’s Disease Youth Organization 

Infantile Spasms Center
The Infantile Spasms Community Board

Alpha-1 Association
Daily Strength Alpha-1 Online Support Groups

Are there support groups which you have found helpful?  Please share with us!

Posted in Caregivers, Diseases, Featured, Media Center, Uncategorized | Tagged chronic illness, Infantile Spasms, narcolepsy, Pulmonary Fibrosis, Pulmonary Hypertension, Support, Support Groups | 3 Comments

Julie Ann’s Story

Posted on July 6, 2012 by CVCinfo

Twenty-five years.  I keep repeating that over and over again.  It’s taken nearly twenty-five years for me to get the answers I’ve been seeking about what is happening to my body and what is wrong with me.  Talk about a long road!

Nobody in my family is sure exactly when it all started anymore.  The first “episode” that I can clearly recall happened during the National Anthem while I was in my kindergarten classroom.  I was five years old.  I remember not knowing what the strange feeling was in my head or my body.  I remember hearing everyone around me talking, but suddenly not being able to see, move, or speak, and not knowing what exactly was going on.  The Anthem was still playing.  The teacher was calling my name, asking me to wake up.  I was awake!  Why can’t I talk?!  Why can’t I move?!  Why can’t I open my eyes?!  I was terrified that I was dying.  Finally, and suddenly, I could open my eyes, and squeak out a sound.  Then, I could move a little.  I wasn’t sure what was going on, but I was terrified.  And thus began a nearly twenty-five year journey full of doctors, tests, misdiagnoses, medications, hospital visits, and searching for the answers.

From that point on, episodes similar to that one continued to occur again and again.  They happened at school, at home, at friends’ or neighbors’ homes, in public places, and at various places where I’ve worked.  Doctors gave me a plethora of diagnoses– hypoglycemia, vasovagal syncope, seizure disorders, panic disorders, just to name a few– and treated me for those disorders, but the episodes kept happening.  Even when I wouldn’t have complete collapses, there were innumerable occasions when I’d feel just the same as I do before my body gives out.  It starts with an odd tingling sensation in my head.  The next warning is a tunneling of my vision, where I can only see in a narrow stream in front of me.  Shortly thereafter, my body is overcome with a weakness and a sensation I can only describe as an odd numbness.  Often times, this is where things stay for a bit.  These occasions happen anywhere from once daily to over twenty times in a day.  On the occasions when my body collapses, I stay awake, but fully paralyzed.  I can’t feel, see, move, or speak, no matter how hard I try.  I am aware, I can hear and understand sounds and voices, but that’s all.  I’ve described this repeatedly for nearly twenty-five years.  No one could help me.

Last year, I complained to my then-current primary care physician about these “episodes” that don’t result in full collapse, not even thinking that they might be related to the collapses.  I’d had several collapses, as well, in the midst of these complaints and issues, so she sent me around to each of my current specialists to have them look me over.  After the cardiologist, endocrinologist, and neurologist all sent back unremarkable reports, she called me back into her office.  I again explained my complaint to her, and again explained that I had been battling severe exhaustion, fatigue, and sleepiness– to the point where I was yawning incessantly all day every day, regardless of how much I slept the night before–and how these issues have been getting progressively worse, regardless of my attempts at correcting them by eliminating caffeine, resting more, watching my diet, losing a LOT of weight (on purpose), and other suggested lifestyle changes.

The statement about the incessant yawning became the turning point in my medical history.  When the doctor suggested that I might have narcolepsy, I thought she was a bit crazy.  I left the office with the referral and figured one more appointment wouldn’t be so bad.  After a brief appointment containing a ton of seemingly random and unrelated questions with the sleep medicine specialist, he said he agreed with my PCP on her narcolepsy theory.  He wrote me a prescription for a narcolepsy medication, gave me a list of topics related to narcolepsy to research, and scheduled me for a sleep study.

The medication improved my daytime sleepiness immediately and incredibly.  The research I did at his suggestion showed so many similarities to my own issues that it felt as if these articles had been written about me.  The sleep study confirmed his diagnosis both because of the monitoring results and because of the fact that I had one of these full-body collapse episodes while there at the lab, unfortunately bruising my face up badly.  Thankfully, however, the episode was caught on the video monitoring system, and he was able to see what happened and tell me what it was.

It’s called cataplexy, and it’s a symptom nearly exclusive to narcolepsy.  When Dr. Winter came to my room just shortly after it happened to check on me, he said something that I will never forget:

“It’s cataplexy, and we’re going to fix it.”

There it was– the name for what was happening to my body for all these years, and a doctor who said it could be fixed!  The next morning, November 22nd, 2011, I sat in his office and, for the first time, got to see myself collapsing. I watched, silent and heartbroken, as the video played.  I was sickened to think that this is what my family and friends had been seeing for so many years.  I’ve been told so many things, by so many doctors.  Some had even told me it was all in my head!  I refused to stop looking for an answer.  I knew that someday I’d find that one puzzle piece that made everything fit.  That day was November 22, 2011.  That piece is narcolepsy with cataplexy.

Getting my diagnosis, and my answer, is freeing, and at the same time very constricting.  There is nothing available today that is going to cure me.  Even with multiple medications, I’ll still have to deal with this for the rest of my life.  But I know what I’m up against. Scheduling medications, scheduling sleep, wake-up, naps… It’s all a balance. But I’ll figure it out as I go.

It took me almost twenty-five years to get here.  It’s time to start the next leg of this journey.  So what is next?

Treatment.  Medications and lifestyle changes are important to help cope with and manage the symptoms and complications of narcolepsy with cataplexy.  It’s going to be frustrating, and it’ll take some time for me to adjust, but it will be well worth the effort.  Trying out different stimulants to find something that might work well enough to keep me awake during the day so that I can accomplish the things I want out of life will be tricky, and will come with disappointments along the way.  I’ve already had to switch to a different stimulant because the first stopped working, and even on the newer one twice daily, I constantly feel sleepy and exhausted.  The options available for treating narcolepsy aren’t foolproof, and they’ll never make me have the energy of someone who doesn’t have the condition.  Nothing will.  I need to learn to accept that, and so do my friends and loved ones.

Education.  Very few people know anything at all about narcolepsy, and even fewer know about cataplexy.  Affected people go an average of 10-15 years between the onset of symptoms and a proper diagnosis.  I am joining the push for more awareness and understanding of this potentially debilitating illness.

After twenty-five years, I can finally take the first step.  And I’m ready to take it.  Thanks to Caring Voice Coalition, I can afford to take the steps toward doing what I need to do, so that I can achieve the things I want in my life.  My case manager, Lauren, is the absolute most amazing person to work with on everything related to my medications, insurance, etc.  I can’t begin to thank CVC, or Lauren, enough.

Posted in Diseases, Featured, Media Center | Tagged Cataplexy, julie ann, Misdiagnosis, narcolepsy, Share Your Story | 3 Comments

Shadow Dancer

Posted on May 16, 2012 by CVCinfo

By Alex Withrow

The first question I like to ask anyone who makes a living doing what they love, is how they initially became inspired by their profession. And in the time I spent getting to know Trinity Hamilton (in our e-mail exchanges and phone conversations, and my subsequent research of her, her work, and her disease), her answer to that question is by far the most profound thing she said to me. But more on that later.

THE DREAM

Trinity Hamilton became a dancer by mistake. Or, more accurately, by coincidence.

When she was four, her dancing in front of babysitters and family members led her mother to enroll her in a ballet studio. By nine, it was an ongoing joke within the family that Trinity was going to skip college and be a professional ballerina. By 16, she was dancing six days a week and competing regularly.

“From that very early age, I was fascinated by dance,” Trinity said. “I never wanted to be a cheerleader, or hang out with friends after school – it was all about the dancing.”

By her senior year of high school, Trinity had a contract to attend BalletMet in Columbus, Ohio, which she ultimately turned down as the result of a debilitating back injury. A few years later, she was a dancer with Joffrey Ballet in Chicago, which The New York Times has described as one of the top three ballet companies in America.

Joffrey was everything she had hoped. She was “eating, sleeping, and living dance;” carrying out the dream that she had set for herself as a young girl. But in 2000, her childhood bouts of exhaustion (which she and her family had always written off as fatigue from dancing and going to school full time) were catching up with her. Whenever the dancers were given a short break, you could often find Trinity asleep in a corner somewhere. She began falling asleep on the train to work and on the train going back home, often waking up in seedy areas of Chicago. She began to speak lucidly, unaware of what she was saying, and hallucinating regularly. Finally, her ballet master suggested she see a doctor, and when she was 20 years old, Trinity was diagnosed with Narcolepsy.

THE DISEASE

“Myself and the specialists I work with actually don’t know when I started getting narcoleptic symptoms,” she said. “Because looking back, my parents and I realize that sleeping had been an ongoing struggle of mine for quite some time.”

The medication Trinity was prescribed “helped her get through the day,” but two years later, she started feeling symptoms of cataplexy, an affliction often associated with

Narcolepsy in which patients suffer chance bouts of muscle loss and/or weakness. These attacks, while usually brought on by strong emotions, occur at random and have proven to be fatal.

“I didn’t even know what cataplexy was,” Trinity said. “I was diagnosed, and soon prescribed medication. It helped, but I was always so afraid of falling on stage. And with that fear came doubt and lack of confidence. That’s when things started to get really bad for me.”

THE DOWNFALL

In the years after being diagnosed with cataplexy, Trinity said she began losing everything – confidence, the ability to stay awake during rehearsals, control over her limbs and movements – everything.

In 2004, she left the stage and moved to Florida to be closer to her parents. She attempted to remain active within the dancing community, teaching and choreographing at schools, and even acting as the ballet director and resident choreographer for the New Tampa Dance Theater. But when she was alone, a perfect storm of pity, self doubt and regret boiled inside her. She gained weight, left the house less and less, and became stuck in her own depression.

“I was at the lowest of my lows,” she said. “I remember looking in the mirror and not seeing a dancer anymore. I had no idea what I was doing with my future. It was a very scary time for me.” In the midst of her depression, Trinity crossed paths with a “phenomenal and remarkably patient” individual named Dr. Neil Feldman, who currently serves as the Medical Director of the St. Petersburg Sleep Disorders Center in St. Petersburg, Florida.

Dr. Feldman understood. He listened. He offered Trinity medical advice in the form of Xyrem, a common medication prescribed for Narcolepsy. Trinity was opposed to the idea of going on Xyrem. She feared the lifestyle change, and the drug’s potential side effects. After years of patiently attempting to convince Trinity that Xyrem was her best option, Feldman set up an interview between Trinity and one of his patients that was on Xyrem. That helped.  “A few days later, I began taking Xyrem,” she said. “And everything started changing. Everything.”

THE RESURRECTION

Finding a suitable dosage and getting used to the side effects of Xyrem proved to be a difficult process for Trinity, but once she found the right balance, everything began to fall into place.

After the first month, she was not only staying awake throughout the day, but remaining alert as well. She could drive, she could think – she felt productive for the first time in years. During the second month, the symptoms for cataplexy became dormant.

“Slowly but surely, I began feeling normal again,” she said. “And that’s when I realized I needed to get into shape.  I was given a second chance, and I had to give it another try.”

It’s a long road from your self-described lowest low to a stage on the Las Vegas strip, and it didn’t come easy. Hamilton put herself through a “Biggest Loser-style boot  camp,”practicing hot yoga regularly, hiring a personal trainer, shedding pounds; whatever it took to gently ease her point shoes back on. By the summer of 2008, nearly a year after starting Xyrem, she was back to her “fighting weight.”

She attended a professional workshop in San Francisco with Lines Ballet Company, and it was there that Trinity was given the big push she needed.

“The artistic director of Lines was a former colleague of mine at Joffrey,” she said. “And he kept encouraging me to stop teaching and get back on stage. That was a big jump for me, having other professional dancers telling me that I needed to be performing.”

After auditioning for a few companies, she packed up and prepared to move to L.A. Days before she was set to move, she received a call from Cirque du Soleil asking her to come audition for Mystère in Las Vegas. She flew to Vegas and auditioned on Halloween day, 2009. In mid-November, Cirque called back with their offer. A month later, Trinity was living in Las Vegas as a working dancer with Cirque du Soleil.

“It’s funny,” she said. “Attending Joffrey was my childhood dream, and once I started getting back into shape, Cirque du Soleil was everything I wanted for myself. It was one of those amazing dream come true situations. Again.”

THE LIFE

Here’s how a day in the life of a Mystère dancer typically works: You arrive at the Treasure Island theater by 4 p.m., rehearse, do a show (or two), leave at 11:30 p.m., home by midnight, wind down, go to sleep. You’re off Thursdays and Fridays, two weeks in January, a week in May and a week in September. You work every holiday, totaling roughly 475 shows a year.

Trinity’s first year in Vegas was tough. She didn’t know anyone, she was getting used to the town and the lifestyle, adjusting to a new sleep schedule, and so on. It was all work for her.

“It was important to make sure I could live up to the challenge,” she said. “So for that first year, I was firing on all cylinders. I had to make it through that first year with no problems.”

The hard work paid off. Her dancing was strong, her confidence was newly fulfilled; she was back to living her dream.

THE MOTIVATION

Today, Trinity has made a life for herself in what she describes as a beautiful town. “Vegas has this persona of being… Sin City,” she says with a laugh. “But outside of that, it really is a lovely town, a sprawling suburbia off the Strip. It’s actually a very normal life.”

When I ask her if her sleep is okay, she eases out a, “Yeah,” with an audible sigh of relief.  “I have to make a point to sleep,” she says. “So sometimes I miss out on things. It’s Vegas, so there is something to do at every hour. But birthday parties, or get-togethers after shows, I usually have to skip out on those. Sometimes I’m asked to volunteer for PR gigs with Cirque, which I’d love to do, but because they are early in the morning, I just can’t. Medically, I can’t. It’s a little tough, missing out on those social engagements, but I have to get eight hours of sleep.”

When I broach the issue of how Narcolepsy is often depicted with humor in pop culture, Trinity’s tone becomes serious.

“It is an extremely misunderstood disease,” she says. “In terms of how it is depicted, it’s just a matter of getting people educated. People think that Narcolepsy is uncommon, and I know it is considered a rare disease, but statistically, it’s as common as Lou Gehrig’s and MS, I believe.” (According to the National Library of Medicine, approximately 15,500 Americans live with Lou Gehrig’s disease, 155,500 have Narcolepsy, and roughly 300,000 people suffer from Multiple Sclerosis.)

“You bring up Narcolepsy, and people know it as that falling-asleep disease,” she says.  ”But there’s a seriousness about it that people should be aware of. The more education there is about it, the closer we may be to finding a cure.”

When asked if she has any advice for people who are afraid to fight for their dreams, Trinity’s response is optimistically direct.

“Everyone has challenges in their life,” she says. “Even in the darkest of times, I reminded myself that I had to value and appreciate what I had. I honestly do not know what inspired me to become a dancer. That remains one of those beautiful mysteries. But I’ve always been inspired by other amazing stories. By people who have fought in wars, or have other diseases, or stay at home and raise their children. We all have our challenges, but in terms of living out our dreams, of taking that leap, the biggest fear is within ourselves.”

It’s interesting that Trinity gains inspiration from other amazing stories. Call it a hunch, but it wouldn’t be surprising if hers inspires a few people as well.

Posted in Diseases, Featured, Media Center, Uncategorized | Tagged Ballerina, blog, Caring Voice Community, Cataplexy, CVC, narcolepsy, Trinity Hamilton | 3 Comments

The Day Started Off Normal Enough

Posted on March 14, 2012 by CVCinfo

You awoke to the sounds of the alarm, the radio, the smell of coffee, and the buzzing of your phone.  You use everything available to wake up in the morning.  You can’t afford to lose another job because you’ve overslept.

You’re still rushing to get ready, and the cold-shower-trick doesn’t wake you as much as it leaves you shivering and cranky.  You can live with some shampoo in your hair.

_____________________________________

You head to court.  It’s not your normal routine, but you need to take care of that ticket.  You were only at the light for a moment.  It had been a hard day at work, and the heat had just really started cranking on such a cold day.  It’s not like you had RUN a traffic light.  You were at a complete stop.  The officer who happened to be sitting behind you just really didn’t understand how you could have zoned out in such a short amount of time.  The sobriety test was humiliating enough without the ticket.

You made it through work.  That proposal had to be rewritten, but you made the deadline.  It seemed fine yesterday, but how did you miss so many typos?  Oh, well.   Done now, and on to a glass of cabernet.  Must remember to be careful with the santuko.  The garlic needs to be paper-thin, but that knife is sharp.  Another trip for stitches is the last thing that you need today.  A sizzle tells you that the olive oil in the sauté pan is just about ready…

…At least the fireman was cute.

 

Not really so funny, is it?  And not really so rare, either.  Narcolepsy in some form affects about 1 in 2,000 people.  Many go undiagnosed.  Most see the first symptoms in their teens, but that isn’t a hard rule.  Two of the most common symptoms are excessive sleepiness and a loss of muscle control (or cataplexy), but others may experience hallucinations, sleepwalking, or any of a host of other sleep-related symptoms.

As you can see, having narcolepsy comes with a set of inherent dangers, and there is no cure.  There are a variety of treatments and medications that can help, but there are some things that you can do right away to help lead a normal life.

Your first step is to seek a diagnosis.  If you think that you have a sleep disorder, try taking the Epworth Sleepiness Scale Test.  While it is not a professional diagnosis, it is a valuable tool to help determine whether or not to seek a doctor’s advice.  Kind of like a high fever and sore throat.  Check and check; time for some antibiotics.

Step two is evaluating your lifestyle.  Is your addiction to diet soda impacting your ability sleep properly?  Caffeine, alcohol, and nicotine have all been shown to interfere with sleep.  So have many over-the-counter medications.  While it may be inconvenient and you may miss the taste, your diet can play an important part in managing your sleep.

Step three is documenting your life.  If you need to work on a large project, try to break it up into smaller, more manageable pieces.  Become a note-taker.  Not only will it help you to track your progress, it can become a great tool for managing your narcolepsy.  You may find that certain foods, situations, or activities trigger a rash of symptoms.  You’ll now have a journal that you can share with your doctor, and a reminder of what to avoid.

While certainly not the final step, the last we will impart for today is to SHARE!  Your coworkers can help you to stay caught up at work.  Your fellow students will surely share some lecture notes.  Sharing with others makes having narcolepsy a part of who you are, like having blonde hair or being left-handed, and less of a parlor trick.  If things work out with the fireman, he should be willing to drive.  And who knows, he may be pretty handy with a Japanese chef’s knife.

 

 

Posted in Diseases, Featured, Media Center | Tagged narcolepsy | 1 Comment

What’s Your Story?

Posted on February 7, 2012 by CVCinfo

We’ve been thrilled with the reaction to our website, and we really enjoy sharing with our many fans on Facebook.   We get to share with you tips for healthy living, breaking news about medical research, and stories of hope and courage.

It is the stories of the people that we’ve helped that have inspired us the most.

We shared the story of Justin, and how his mother has struggled to raise him.  Kindra is like many other moms, married and raising children, but her story has a twist:  In addition to school, groceries, and family, she seeks answers for dealing with Justin’s pachygyria and infantile spasms.  Her story touched us, and led us to the story of Marissa and her father’s chronicle of her life.

We got to tell you about Meghan.  She was 2 when her father was diagnosed with Huntington’s disease.  As she started college and began to plan her own adult life, she also received a diagnosis of the disease.  Her father’s illness gave her a 50/50 chance of having it herself, and the coin flipped against her.  Meghan didn’t give up, though.  She graduated college and is sharing her story on YouTube and is hosting a concert to spread awareness of her disease.

Roberta has a story like many of the people that we talk to.  She went through months of illness, testing, misdiagnosis, and was finally told that she had Pulmonary Fibrosis.  After reaching several roadblocks in her journey to treatment, she made a right turn and found us on her road.  She still has many hills to cross, but breathes easier knowing that she has an advocate in Caring Voice Coalition.

Matthew went from an active lifestyle to one of uncertainty after a diagnosis of Alpha 1.  Many people commented on his story.  They shared with us their own tales of fear and uncertainty, and of the struggles that they had endured in a quest for treatment.  Matthew’s stories put us back in touch with Steven, whose mother died of Alpha 1.  We became involved with Steven after his own diagnosis, and it was wonderful to help him, to know that he was hanging in there, and we were honored to make a small dent in his life.

Sometimes it’s hard to convey the message in some of our stories.  How does one express a lifetime of chaos, doubt, and failure?  Joyce experienced all of these things in her journey through Narcolepsy.  The comments to our telling of Joyce’s story conveyed the message:  You’re not alone, you’re not crazy, and your perseverance is an inspiration.

We often receive notes and messages from the people that we help that thank us for what we do.  We’re referred to as “angels”, “lifesavers”, and “heroes”.  That is all very flattering but we sometimes come across someone who puts everything into perspective for us.  Such is the case with Dennis.

Dennis is a bona-fide New York City Detective with over 20 years of experience on the beat.  He went from a street cop to an undercover officer, and then received his Detective’s shield.  He was in Manhattan on September 11, 2001 and spent several grueling months at Ground Zero as he and his comrades combed the wreckage for remains.  He was then diagnosed with Pulmonary Hypertension.

Dennis’s story brought comments, encouragement (and some flirting!), from friends, PH sufferers, and cops with PH.  People heard his story of courage from just across town in Long Island, from all over America, and from as far away as Scotland.

We wonder how many others there are out there like Dennis, Joyce, Matthew, Roberta, Meghan, and Justin?  We’re sure that there are millions of you.  And we plan on continuing to provide a voice for you.  If you’re someone who is currently working with us, or someone who stumbled across our site, we’d love to hear from you.  Contact us and let us share your story.

We empower patients who live with life threatening chronic diseases.  The people in the stories that we’ve shared are the heroes.

Posted in Diseases, Featured, Uncategorized | Tagged Alpha 1, Contact Us, Huntington's, Infantile Spasms, narcolepsy, PF, PH | Leave a comment ← Previous post