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: http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#139493201

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.

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?

I 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.

Father's Day

It's been a tough few weeks for Matt.

Leading up to the "This American Life" episode, Matt and I were doing a lot of talking about his narcolepsy: the frustrating and scary search for correct diagnosis and treatment, how it has affected our family, where we want to go with the book. The constant focus on this disease that has come to define so many aspects of our lives uncovered emotions that Matt usually tries to prevent himself from feeling.

For Matt, strong emotions lead to intense attacks of cataplexy. These attacks make Matt feel quite ill -- and more tired than usual. Which is saying something for a narcoleptic.

So, going into Father's Day was tough. And Father's Day is difficult even during the best of times.

The kids have learned to weigh the potential effects of their actions on Matt's health. This year they each chose slightly different ways of reaching out to wish him a happy Father's Day. Amanda purchased a card but held on to it, planning to give it to him when we visit next week. Joseph called. And Ben (who is local) dropped by for dinner and brought a funny card.

I lost count of how many attacks of cataplexy Matt had on Sunday, but in addition to the several he had simply because he was already having a tough week, the card from me and each contact with one of the kids triggered another.

At the close of the day, Matt confessed to me that he is no longer certain that he we will be able to tolerate the stress of the trip to California we have planned to take this weekend.

I'm really struggling with this. In the four years since he started having attacks of cataplexy, we've been trying to land on some sort of compromise regarding how involved he will be in the lives of our family, most of whom are in California.

How do we make such a decision? How do we weigh the cost that each relationship takes on Matt's health against the benefits of loving and being loved by another human being? Of being part of a family?

There are no easy answers here. I suspect that we will revisit the challenge of finding a compromise that we can both live with periodically for the rest of our lives.

But today isn't the rest of our lives. Today is two days before we had planned to leave on a trip I have been looking forward to for some time. Three days before we were to share in Riley's first ballet recital and to cheer Isabelle on at one of her first soccer games.

Deep breath: I love Matt and he loves me. We will continue to seek, sometimes blindly, compromises we can both live with. We will repeatedly be forced to confront the question: how much "relationship" is enough to meet our needs without taking too much of a toll on Matt's health.

I am thankful that we are both fiercely determined to keep this marriage working.

There will be more recitals and soccer games. But this has been a tough week.

On hugs and other dangerous activities...

I really love a good hug.

No, I'm not promiscuous with my hugs; I tend to save them for those whom I care about. Of course there have been exceptions: times when I really needed a hug. Needy enough to hug Rush Limbaugh or John Boehner -- that desperate..

Once such time occurred on a drive home from Yosemite. I'd been vacationing with my two daughters and another young family. We had borrowed a large motor home and had a lovely time camping out in style and seeing the park.

Somehow when we packed up our assorted children and belongings for the drive home, I ended up as the lone adult in a small car with three kids under four. The other grownups drove the motor home; we made plans to meet up for lunch.

Shortly after I exited the park I lost sight of the motor home. I pulled over on the side of the road, waiting for what felt like hours for the others to catch up. I sat there, trying to entertain 3 cramped, hot, hungry toddlers, singing "100 bottles of beer on the wall" for the umpteenth time. About this time a CHP car pulled over and the patrolman approached the car.

I went for my purse, figuring that I was about to be asked for my license. Panic set in as I realized I didn't have it. No, not just my license was missing. I had no purse. No purse, no license, no money. And no map.

Something you should know about me: I have ZERO sense of direction. Seriously. I get lost following a single wrong turn. In my home town.

Not only do I lack any innate ability to find my own way, I am also extremely gifted at getting royally lost. Most of my "what was I thinking" moments are related to this ability.

Think screeching the car to a halt smack dab on top of light rail tracks on a pedestrian mall. Oncoming train blinks its headlights in warning, onlookers snap pics on their cell phones (certain that what they now witness will head the 6 o'clock news).

It's amazing, actually, that I haven't managed to earn myself a Darwin Award. Yes, I am that brilliant at getting lost.

So there I was: 100s of miles away from a home I had no idea how to get to, no money for gas or food, no map, three hot, hungry (and bored) toddlers. I've concluded that the missing motor home must have gone off the road, killing my husband and friends. And here comes a CHP officer signalling me to roll that window down.

God, I needed a hug. I really, really, really needed a hug.

I don't think CHP officers are allowed to dispense hugs.

My husband Matt fears hugs. He avoids them pretty much as often as possible.

You know that feeling of warmth and love, of "coming home" that accompanies a really great hug? When Matt allows that feeling to gain purchase, he collapses. His head droops; he loses use of his arms; his legs give out. He must either lay down or fall down. Matt has to work very hard at times to not feel any strong positive emotion. Matt has narcolepsy with cataplexy. His brain has turned traitor.

Is it healthy to completely eschew physical affection in a relationship? To prohibit the sharing of positive feelings? I think not. And I am so very thankful that Matt agrees.

That said, how do we find a place of compromise -- a level of affection that nourishes our relationship without debilitating Matt?
I love a really good hug. Sometimes I need a really good hug.

But my hugs make my husband sick.

Sleeping Around: Adventures in Narcolepsy and other mutinies of the brain

How does your brain let you down?

Come on, you know the feeling: You're sitting for an exam and you know you know the answer to that question. Heck, it's even a "gimme" question: free points to even the dumbest dodo in the class-easy! But try as you might, you can not force that elusive answer into focus. (Curse you, O-Chem!)

Or: what is that word? You feel like it's right "on the tip of your tongue", even as it digs itself deeper into some quiescent, hidden corner of you your brain. No amount of excavating reveals that nugget you seek.

My brain lets me down in these, and other ways, all the time.

No!

It's OK to let it out. You know you want to. All together then: "Duh, Trish. Talk about stating the obvious!" (Especially if you happen to be my old O-Chem professor)

But I digress. I didn't intend to mislead you, but this first post isn't really about my brain. It's about my husband's. You see, Matt's brain has truly mutinied. Turned traitor. Let him and all those who love him way, way down.

I promise: there's more to come. Hopefully a lot more as we explore some of the ways that our brains let us down. And how we sometimes manage to thrive, even so.

Let me leave you with this:

I make my husband sick.