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Friday, July 2, 2010

Huh? What is Narcolepsy with Cataplexy anyway?...

We've been living with this for so many years that I tend to forget how confusing all of the odd terms for the various symptoms of Narcolepsy can be. Several of you have shared that you don't know much about this disease, so I thought you might be interested in a bit more background information. I think it will make it easier for you to understand the effect that the disease has on the lives of those who have it or who love someone who does.

The following brief description (and more) may be found on the "Narcolepsy Fact Sheet" published online by the National Institute for Neurological Disorders and Stroke (NINDS):

"Narcoleptic sleep episodes can occur at any time, and thus frequently prove profoundly disabling. People may involuntarily fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving an automobile or operating other types of potentially hazardous machinery. In addition to daytime sleepiness, three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening; and brief episodes of total paralysis at the beginning or end of sleep."

You may find some of the best descriptions of symptoms and information about narcolepsy and cataplexy at:

To summarize, the symptoms of narcolepsy include:
  • Excessive daytime sleepiness (which you may find referred to as "EDS")
  • Cataplexy -- An episodic paralysis of voluntary muscle movement. Matt experiences cataplexy multiple times a day (despite the fact that he takes the medication that is most effective in treating it). Unfortunately, he suffers from the most severe form of catplectic attacks. When experiencing an attack of cataplexy, Matt is unable to move, speak, or keep his eyes open. However, during this time he is fully conscious of what is going on around him. Although cataplexy can occur spontaneously, it is more often triggered by sudden, strong emotions such as fear, anger, stress, excitement, or humor.
  • Hallucinations 
  • Sleep paralysis is similar to cataplexy in that it is experienced as a paralysis or inability to move. As the name implies, it occurs just prior to falling asleep or waking up.
When Matt first started experiencing these symptoms, especially the cataplexy and sleep paralysis, it was incredibly frightening. He would have these sudden, unexpected bouts of total paralysis. He was conscious, and aware that he was awake, but completely unable to move. He couldn't open his eyes or move his head, legs, or arms, no matter how hard he tried. And we had absolutely no idea what was going on.

A person with Narcolepsy may have some or all of these symptoms in varying degrees of severity. Matt has experienced all of them (although I confess that I thought that the hallucinations were a side effect of the medications he has to take). I do like to tease him that he gets the relatively "cool" symptoms when he describes his hallucinations, citing the amazingly bright colors and visual distortion that occur  ;o)

There is no cure for Narcolepsy though there are treatments available that ameliorate EDS and cataplexy. Matt takes multiple medications daily to treat these symptoms. Fortunately the meds have enabled him to continue to work, but they don't prevent attacks completely. Like most narcoleptics, the events that trigger his most debilitating attacks of cataplexy are those that cause him to feel strong positive emotions. If you have read through my previous posts you will have a good idea of what these sort of triggers are. They include activities such as hugs or hand holding, celebrating (or simply reminiscing about) happy occasions, and socializing with family or friends.

Not surprisingly, this disease has had the effect of isolating Matt from continuing most relationships.

BTW -- we are not alone in this. Narcolepsy is much more common than most people would guess, directly affecting about 1/2000 Americans.

And so, I blog.

I share this experience with you, hoping as I do so that it will help you understand the disease, my husband, and our life together. Perhaps you will have wisdom or relationship experience to share that will help guide Matt and I as we work through difficult decisions: how much (if any) shared family time can Matt commit to, and how do we maintain our relationship when simply being together tends to make him sick?

I share this also with the hope that others who live with Narcolepsy will find some solace in knowing that they are not alone. I am stubbornly hanging on to the belief that it is possible to make this continue to work, that there is a compromise place where we can find an appropriate balance between relationship and isolation, love and avoidance of all things lovely.

Thank you for joining me.

Thursday, July 1, 2010

Learning (at least I hope I learned something) the hard way...

Hi folks, I'm sorry for the delay between posts. Life has been a bit more difficult than usual of late, and I have soooo wanted my next post to be more uplifting than previous ones. I've been waiting for an improvement so that I could approach you from a more positive space, but that ol' rainbow is still  hiding behind the grey clouds.

You may recall that a while back I had the "bright" idea that Matt and I should take a car trip together to see family in California. Miss Riley was getting ready for her first ballet recital and Belle had a soccer game scheduled.

This past weekend we took this trip. I found the ballet absolutely wonderful, Matt: not so much. The soccer game was loads of fun too (for me) although soccer matches between a bunch of 3 year-olds appear to have a lot in common with herding kittens. Stay tuned for more (with pictures!) in a future post.

Back to Trish's folly:

Hmmm, first clue that I had been seriously deluding myself to hope that this would be a a lovely opportunity to enjoy family activities with my husband? -- Within minutes of our arrival in Sacramento, Matt had his first of many, many, significant and debilitating attacks of cataplexy.

For goodness' sake: what was I thinking? Seriously -- what was I thinking?

know that family time triggers his cataplexy. I know that strong positive emotions do the same. And yes, I am painfully aware that Matt will have an attack if I simply describe to him some cute thing one of the little ones has done.

And yet, I dragged him 600 miles to attend a pair of activities. both of which featured cute kids having fun. Activities absolutely certain to provoke an attack. Or, as it so happened, a series of attacks.

I don't know how to explain my total disregard for our reality when planning this trip. Here are a couple of theories:

  1. I really hate seeing Matt miss out on the fun kid stuff and so... I "convinced myself" that the enjoyment he would experience would outweigh the discomfort of the attacks he would have.
  2. I desperately wanted to share these experiences with the man whom I love most in this world and... I convinced myself that the enjoyment Matt would experience would outweigh the discomfort of the attacks he would have.
Whatever the reason(s), here is how the weekend unfolded:

We arrived in Sacramento late Friday night. Matt had his first attack. The kids arrived at the house a couple of hours later; Matt had his second attack (so we turned in for the night).
Saturday a.m. Matt sequestered himself in a bedroom until it was time to leave for the soccer game.
We arrived at Belle's soccer game. Matt managed to walk to the field, then had an attack which lasted for the duration of the game, not abating until all of the little ones had dispersed to go home. (The new profile picture is of Matt at the soccer game.)
We headed back to the house for lunch. Matt hid out in the bedroom again until it was time to leave for the ballet recital.
Within 5 minutes of our taking our seats at the recital, Matt had an attack. The cataplexy lasted through the first act and intermission. When Matt was finally able to open his eyes and to move, he stumbled out of the theater and then headed back to the house.
At the house, Matt once again disappeared into the bedroom, suffering another attack which kept him from attending the post-recital BBQ.
Saturday evening Matt informed me that he needed to go home as soon as possible.
We had been in Sacramento for less than 24 hours.
Sunday a.m.: we climb back into the car to begin the 600+ mile drive home.

For goodness' sake: what was I thinking? Seriously -- what was I thinking?

I hate this disease.

I hate the fact that unless and until new ways of treating it are discovered, Matt and I won't be able to share a ballet recital, soccer game or birthday party without Matt becoming extremely ill.

I hate that I will have to do all of these things without my partner.

I hate the fact that this disease robs Matt of the joy of these occasions.

I love my husband but I hate his disease.