We did it!

Just a quickie tonight to catch you up. Time to breathe a sigh of relief -- Matt and I made it through Thanksgiving with the family AND my Dad's birthday party without us having to turn right around and drive the 650 miles back home!

We even have the pictures to prove it :o)  Thank you, MaryO, for the great photographs!

How did we do it, you ask? The key seemed to be finding a quiet room where Matt could work or play on his computer relatively undisturbed. Thus ensconced in a corner of Dad's guest room, Matt managed to keep himself mostly awake and upright on Thanksgiving AND (drum roll please) was able to emerge from the hermitage long enough to enjoy a lovely Thanksgiving with the family. Both our girls and their families, our son Joseph and my Dad, all around one dinner table for the first time in years.

Matt had moments of cataplectic muscle weakness (especially when the little ones were doing something especially cute at the table) but no full-blown attack to prevent him from joining in conversation and noshing with the rest of us.

Wow -- we were kinda like a normal family there for a bit. And we did it all over again on Saturday for Dad's birthday. Well, kind of. On Saturday Matt stayed in the guest room pretty much the entire party. Even with the isolation he had some serious attacks, probably triggered by all the noisy festivity going on outside his room. During the course of the day, Dad held court in the living room as 50 or so friends and family came by to eat, drink, and be merry.

Meanwhile, Matt granted an audience to those brave enough to enter the guest room to say "hi".

We debriefed a bit about the trip on our drive home, and agreed it worked out pretty well for both of us this time. Perhaps we are finally finding the boundaries that will allow Matt to spend some time with family but avoid triggering debilitating attacks of cataplexy?

Perhaps we just got lucky?

Hard to say without more data, but I choose hope: I think we are finally figuring it out :o)

By the way -- sorry for the radio silence. I am actually working a lot right now and loving it (though I'll love it even more when we can afford to pay me for more of the hours I work). Check it out though -- we have a website:  http://www.hasolutions.org/  My job title is "Director of Research" but at the moment I am doing quite a bit of everything: research, direct service, education. No two days are the same so it keeps things interesting. It's about time I added a bit of "good" interesting to our lives!

Hugs!
Trish

Handmade Holidays

We are pretty darn broke. After being out of work for more than 2 years (but more on that later), we have scraped right on through the bottom. This really sucks during the Holidays, but I actually anticipate a fabulous Christmas this year: we are going to have an old-fashioned handmade Christmas!

Admittedly, this is probably a bit easier for me than for most (I have lots of jewelry ideas and plan on making some fused-glass ornaments). Sorry guys ;o)  But it is the thought and the heart that counts, and I can't wait to see what handmade treasures the kids come up with.

The focus of this blog is a departure from my usual discussion about what it is like to live with Narcolepsy. However, the ArtFire folk are holding a contest and the winner will get a Digital SLR camera! I could really use that camera, so here you have it... my blog about our upcoming handmade holiday.

Stay tuned, fair readers, more narcolepsy and relationship analysis to come. And some very exciting/fun information about my work life!

Cheers,
Trish

Are we REALLY going to go there? Again?

Matt and I have a crazy few weeks ahead. I am off to the NAHAC (National Association of Health Advocacy Consultants) conference in Washington DC and when I return, Matt will be leaving for the Society for Neuroscience Meeting. I'm a bit bummed about all the time we will apart. (Yes, I AM the person whose last blog addressed the fact that we are back to thinking about living apart again).

Matt -- not so much. He remains pretty unfazed, and exhibits no interest in spending extra time together in anticipation of all that time apart. Not even to squeeze in a morning trip for coffee before leaving for work. Sometimes this gets to be so much to bear: we have so very little "quality" time together, primarily because of the toll it takes on Matt when we focus on our relationship. I don't want to be needy, but it's hard to find a reasonable compromise where I get enough good time with Matt without him having too much good time with me.

So I end up spending most of my time struggling with the sadness that I feel because I'm not getting my relationship needs sufficiently met. At the same time, I understand that it isn't fair to expect all of my needs to be met in my relationship with Matt. I know I need to build more mutually supportive relationships with friends. The problem is, I get so little "good" time with Matt that I hate to spend the necessary time away from him in order to strengthen other relationships.

And so it goes, around and around in my head and in our little lives. A constant low level of depression certainly doesn't make this any better. How can I consider spending time away from Matt when so little of the time we have now is quality, marriage-sustaining time?

What a weird relationship we have. And yet we love each other, and I really, really, really don't want to lose that.

And, oh yes, after our separate trips, we are going to visit family together. Again. This did NOT go so well the last time (check back through my earliest blogs for a recap). However, my Dad has a big birthday coming up, and Matt loves him and feels it's important for him to participate. I suspect Matt will spend most of his time locked away in a room by himself, avoiding the crowd. Hopefully he'll manage to keep from experiencing status cataplecticus (those rolling, constant attacks of cataplexy that make him so very ill)!

I'll let you know how it goes. Because I am pathetically and eternally hopeful (read "in denial"), I kind of expect it to be better than the last time. Only time will tell, so stay tuned! Maybe we'll have spongecake?

To stay or go...?

We had another one of those weird talks today: discussing whether it might be better for Matt to have me live separately from him.

If you've read my earlier posts, you know that this isn't the first time we have had this discussion. I suppose the weirder discussion was the one where we debated the pros and cons of me moving back into the house with Matt. How many happily married couples have had to ask themselves that question -- should we move in together?

We love each other; heck, we even like each other! And we really enjoy living in the same space.

But it does take a toll on Matt's health. As he put it today, he feels better (finds it easier to fight off attacks of cataplexy) on weekdays than he does on weekends (when we are together pretty much 24/7), and he finds it easier yet when I am out of town.

Matt and I are not "just" spouses, we are best friends. We like to be together and want to share our lives into the future. We have found a balance of sorts at home that kind of "works" (though is not without significant cost to Matt's health).

Hmmm... I wonder if even Dr. Phil would be able to help us evaluate these choices? We could certainly use all the help we can get.


Stay tuned, kids -- this discussion ain't goin' anywhere unless and until someone cures this terrible disease. Because I love the one I'm with, even when I can't be with him.

I promise to update you as we continue to figure it out...

Hugs,
Trish

Spongecake?

Hi there,

Ya gotta love the auto spell check feature -- it's fuzzy "brain" decided that when I typed "hypnogogic" I meant to type "spongecake". That's just too weird to wrap my head around when my head is still throbbing from the migraine I woke up with...

Geeze I stink at this! Sorry for the long silence. I hate to say that I've been too tired (or sick) to update regularly, but it's the truth. My apologies to those of you who have narcolepsy, I know my tiredness pales by comparison. It is a seldom discusses side effect of being partnered with someone who has narcolepsy, however. That interrupted sleep tends to be a shared experience. Add that to my lovely hot flashes (whoopee!) and the migraines and the sum = totally wiped out Trish.

And oh, yeah, I'm working (pro bono at present) -- getting ready to launch Health Advocacy Solutions' Medicare plan selection service in time for open enrollment. One might think that the totally snooze-erific reading I am doing to become our "Medicare Diva" would help me get and stay more rested, but no such luck ;o)

OK, a bit about Matt (since most of you are here because of his experiences with narcolepsy). He just recently returned home after attending the Narcolepsy Network meeting. His experiences there were pretty varied. There is a large population of people (primarily narcoleptics and a select few researchers) who are lobbying to exclude those who are hypocretin-normal from the diagnosis of narcolepsy. There are some pretty negative consequences associated with that decision, not the least of which is the potential that this will also exclude these narcoleptics from access to treatments for the disease.

So, Matt had a few rather "interesting" discussions with people at the meeting who think it is unfortunate that he "has been mis-diagnosed as narcoleptic". Many were surprised to be told that about 25% of narcoleptics do not have mutations in their hypocretin-producing neurons.

They do, however, tend to respond just as well as others to treatments for narcolepsy. They also experience attacks of cataplexy (historically considered a defining characteristic of the disease), excessive daytime sleepiness, hypnogogic hallucinations and sleep paralysis.

This could get messy; that's the reason Matt wanted me to stay home rather than attend. I'm not as patient as he is. I would probably not play nearly as nicely as he did with those who insist that he doesn't really have this disease that has devastated our family and decimated our lives.

More later, I'm still too angry about Matt's treatment to think (or type) straight.

"Free will" redux :oD

Thank you all for your fabulous, thoughtful responses regarding the question of "free will". I loved reading each of your thoughts and stories on the subject!

It appears we are mostly leaning in the direction of yes: yes, there is such a thing as free will. At the same time, we all suspect there are times when we make decisions in a state of mind that is less than completely "free". Case in point: the schizophrenic man who is off his meds and  acting in a manner that he wouldn't if her were taking them...

Perhaps the "free" part is sometimes buried in so many layers of choices that we have trouble finding it in retrospect? There is a song by Casting Crowns called "Slow Fade" that speaks to this a bit. You can check it out here: http://www.reunionrecords.com/castingcrowns/slowfade/

I have a follow-up question, however. As a mom, I have long lamented the fact that our children may make immature, even childish decisions (an exercise of will) of which that, due to their immaturity, they may be incapable of grasping the significance/potential consequences.

Is it appropriate, then, to say that they have "free" will? Is decision-making truly free when one is unable to truly evaluate the potential outcome?

I don't know. Perhaps you have some thoughts?

One last thing I'd like to share as you ponder your response to this question:

The Casting Crowns song (above) incorporates the lyrics of an old children's hymn that kind of bothered me when I heard it. It goes something like this: "Be careful little eyes what you see (repeat). For the father up above is looking down with love; be careful little eyes what you see."

I confess that this song always seemed a bit, well, confusing to me. At once a warning (be careful what you see), simultaneously a promise of God's love (for the father up above is looking down with love).  I was never sure what the lyricist meant by the juxtaposition of those two statements.

Recently I read a book in which the author talked about an experience he had with this song that he felt put it in to perspective. He was being driven through an extremely impoverished area by a missionary friend, assailed by the incredible challenges being faced by the people whom they passed on the road. Lack of permanent housing, food instability, poor health amid filthy conditions...

Then from the back seat of the car, the missionary's daughters, who had been singing children's songs to pass the time, started singing "Be careful little eyes what you see...Be careful little feet where you go...".  And it struck the author then that this lyric was not so much a threat or admonition, but a plea to pay attention. A reminder to really SEE those who surround us and to remember that (1) God loves each of them, too, and (2) God wants us to act as conduits: to SEE and to ACT.

But back to children and free will: is it "informed" enough to be "free" will to those unable to grasp the consequences?

Inquiring minds want to know ;o)

Free will? Or is it "all about the meat"?

Hi there -- I hope you are enjoying a relaxing weekend. Or an exciting weekend. Or a (fill in the blank) weekend that is exactly what you would hope for.  :oD

I'm going to try to keep this brief, but would LOVE to hear what you think. Heck, share this with your friends, enemies and co-workers. It would be fun to get a discussion going on this:

Is there such a thing as "free will"?

As a neuroscientist who also happens to be a christian, I find that question bounces around the walls of my brain with a remarkable frequency. Matt, who is also a neuroscientist, but an atheist is firmly in the "it's all about the "meat"" camp. He believes that the chemical soup that bathes the various areas of our brains is responsible for how we feel and act at any given time. That there isn't much choice, or "will" to be tapped.

I admit he's got a point. I imagine that you, if you have ever suffered from a neurological issue such as narcolepsy, depression, bi-polar disorder or a similar challenge may also understand his point -- whether or not you actually agree with it.

I suspect that most of us have had experiences, thoughts, feelings, actions, that were modifiable via a neuro-active drug or chemical. Have you ever had a "runner's high"? I, sadly, haven't. I do, however, find that pretty much any other kind of exercise will elevate my mood, no matter how depressed or "normal" I was feeling prior to the exercise.

Pharmaceutical treatments act in much the same way. As do some "over the counter" (or "under the radar") street drugs. They change the chemical composition in an area of the brain that makes one feel, think, or act differently.

There was a sadly common story in today's Oregonian about a man with schizophrenia who refused to take his meds and eventually digressed to the point where he stabbed to death his sister who was trying to care for him. That man is a different person on and off his medications. Or at the very least, he certainly acts like a different person when he is on his meds.

So -- answer me this please: is it all about the meat? Are we pretty much a product of our brain chemistry?? Or does he or you or I have "free will". And is this really an "either/or" question?

Oh, and one last question. What do you think about the practice of forcing someone to take their medication? Some states allow this for mentally ill individuals who are deemed dangerous; others don't. What do you think? Is this every appropriate? Is it ever inappropriate?

This inquiring mind wants to know ;o)

Now go get some exercise or do something positive that makes YOU feel good!

The hair of the dog!

Hi there -- I hope you are doing fabulous on this lovely evening!

As for me, I am sitting here next to the unhappy pup, listening as Dr. Phil fixes some rude teens on the TV. I love TV -- I watch it far too much. I think I am addicted to the hope that I, too, will tidily resolving all the conflicts of my day in a single 30-60 minute time slot.

Do you ever wish that life would imitate "art" in this way?

I think Brooklyn does. At the moment she looks like she has leprosy or something. I never knew a dog could be so vain! She has been skulking around the house all day. I think she knows it is going to take a good long time for her beautiful latte-colored curls to grow back. Those bald patches really do make her look like she got into a fight with a week whacker, and the whacker won.

Yesterday started out so uneventfully. Matt was playing his computer game, we had some coffee; I took Brooklyn for a nice walk through the park.

I was feeling a bit down, missing our family, and I shared this with Matt. I decided to work out since that never fails to make me feel better.

Matt decided that he would do something nice to surprise me. Brooklyn's coat was getting a bit matted so he set about giving her a trim.

This is not the first time Matt has cut Brooklyn's hair. He's done it a couple of times now, both with rather disastrous results. And yet, all I've been able to say is "Thank you, Sweetie, for taking care of that chore".

To be honest, I would much rather he vacuum the house. Or clean the bathrooms. Or do just about anything else that needs to be done. (and that's a list that has lots of choices on it!)

But do I tell him this? Oh, no.

Why don't I tell him this? For goodness sake, he spent nearly 3 hours shaving the dog and she looks WORSE than when he started. Heck, I finished working out, showered, got a drink, tidied up the downstairs, and then joined him for a good 45 minutes while he continued to whack at her curls. And I sat there while he kept chopping away.

This weird thing happens sometimes when Matt takes his "wakey" meds: he gets so engrossed in even the simplest task that he literally can not put it down. About 2 1/2 hours into Brooklyn's "trim", I realized that this was what was happening.

So I asked him "So, Hunny, how do you know when you are finished cutting her hair?".

The pup's ears perked up, and I blotted at a couple of bald patches that were starting to bleed a little.

"Uh, I don't know. I just keep pulling up the hair and trimming until it looks like it doesn't need anymore. Hmm, I've got a couple of bald spots here" Matt replied. "Maybe I should stop and just shave it all off the next time? It will be much easier next week now that I've done all this!".

"Yeah, that sounds like a good idea" I said. But what I was thinking was "thank God!"

I don't think I can print what Brooklyn was thinking.

So now I need to figure out a gentle and kind way of re-directing Matt's attention to a different task next weekend. Perhaps the car needs an oil change? I really need to find a sufficiently manly chore.

Winter comes soon and that doggy is way too vain to let me put her in a jacket!

Neurocurious? I am ;o)

It may appear so, but I have NOT forgotten: I promised to share some thoughts Matt and I have had about just how his brain is being derailed in a way that causes him to collapse in a cataplectic lump o' humanity. In an unexpected way on a recent weekend, a new piece of that very complicated puzzle called "Matt's narcolepsy" may have revealed itself.

Oops! I once again get ahead of myself and forget my manners. What an impersonal greeting! Please accept my apologies and allow me a short detour to remedy that moment of rudeness:

Hi there. I've missed you! It's been awhile since I have had a chance to check in. I was away from home, separated from my computer and in full-on care-taking mode, aiding my Dad who is recovering from surgery. Dad is doing better and I am back home with my Sweetie and the pup. Yay on all three counts!

OK, now that we've said a proper "hello", lets get to work on that puzzle.

So far what we have is mostly some nice edge pieces and a few corners. Hmmm, even the most cursory examination indicates that once it is complete, this puzzle is going to be a very revealing picture of Matt's brain. And despite it's rogue activity in the sleep arena, it is a pretty awesome brain if I may say so myself. Yeah, I know I am not the most objective person, but this is my blog so we will go with that ;o)

This new puzzle piece fell out of the sky a few weekends ago. We were hanging around the house, enjoying the beautiful weather when Matt started having uncharacteristic, repeated attacks of cataplexy. There he was at the computer, playing a game and suddenly he would feel an attack coming on. The weirdest thing about this was that this is one of the few activities that occupy Matt's attention in such a way that he never has attacks while doing it. Seriously. Never.

I confess I was pretty concerned, worried that what we were observing was the beginning of a worsening of Matt's symptoms. The night before we had a couple of friends over for dinner for the first time in months, and he had a long, uncharacteristic attack then also. It seemed odd. He hasn't had an attack around our friends in quite some time. And then the next day he was suddenly having these attacks in the middle of a normally "safe" activity.

Confession: I tend of hang on, white knuckled, to the hope that Matt's symptoms have hit bottom. That they will not get any worse. I have lost so much of him already. We are so limited in how much we can do together. And Matt is so limited in the number of things he can do and be fairly confident that he will remain awake and able to move. This disease sucks. The thought that it will get worse? Very, very frightening.

So, this weekend was sick-to-my-stomach scary.

And then I started to get a migraine. No surprise, I often get them when exposed to flashing lights or repeated auditory stimuli. Matt observed that the low frequency sound vibrations caused by the planes flying overhead was probably triggering my headache.

Oh yeah, did I mention that there was an Air Show being held just minutes from our house?

Yup, there were planes flying over our house all weekend long. Droning overhead during the time we were attempting to share a meal with our friends. Zooming by during the time Matt was playing his computer game. Flying around during all the times in between.

D'oh!

That sort of thing is called a variable. Something that is different from one "experiment" to the next. Or, as in this case, something that was different from one weekend to the next. Something that made this one weekend different than many weekends past during which Matt didn't have attacks while visiting friends or playing his game.

Of course we may be deluding ourselves. The increase in attacks may have nothing to do with the auditory stimuli from the jets flying by, but the next weekend, when the planes were gone, Matt was back to "normal": no attacks during his game play. And we haven't had a repeat of that increase in frequency of attacks yet.

So, yeah. I admit it's kinda lumpy and poorly defined, but I think this piece fits in the puzzle somewhere. Heck, it may even turn out to be one of those important bits, a piece that allows one to finally put an entire region of the picture together.

Until next time, sweet dreams!
Trish

Puzzle pieces... On hold

Hi there. I am sorry to leave all y'all hanging yet again, but the responsibilities of a daughter's life are trumping those of a blogger's craft at the moment. I'm still in California, caring for my Dad for another week, and I don't anticipate much of an opportunity to write and post anything worthy of your time.

I'm trying to keep you minimally updated via my I-pad, but it is a much better tool for game playing (Scrabble, anyone?) than for writing. And I really want to share some more of the science of the brain with you next time, so I need access to my PDF library on my computer.

So please be patient with me: more very cool info to follow, hopefully by the end of next week. Andvin the interim, if I have the opportunity, I'll check in here.

I am sure to have cute grandchild stories if nothing else ;0)

Now I need to figure out how to share more pictures with you. I soooo miss my computer, and my live-in tech expert!

A happy surprise

I deplaned in California, only to be met by not one, but TWO adorable granddaughters!
We are having a "sleepover" party. I suspect there will be minimal sleeping going on...

I should be sufficiently recovered to update my blog in a day. Maybe two -- I'm not as young as I used to be.

Until I return, I leave you to ponder this: how DID I manage to get time to shower when my kids were little???

Sleepily yours, Trish. ;0)

The plane, the plane!

Now that title is going to confuse any of you out there who are younger than about 40. Here's a hint though: it is an announcement that aired every week at the beginning of the TV program "Fantasy Island". When you heard Tattoo shout "the plane, the plane!" you knew that the show was about to start, and that someones fantasy was about to take them to places they had never imagined.

Living with narcolepsy and cataplexy was certainly never something Matt or I fantasized about (I think I'll keep those things to myself for now ;o)  This episode of our lives however, has taken us to some places we could never have imagined.

One intriguing place we travel to frequently is the land of "what in the world is going on in Matt's brain". Yeah, I know that many of us ask that question about our significant others from time to time, but for us this is not so much a "what were you thinking?" type of question.

We really do toss around ideas about what might be going on in Matt's brain --what has happened to the neural integrity and the synaptic circuitry of his brain to disrupt his sleep and wake cycle in such a massive way?

For one type of narcolepsy, these questions are pretty far along in the process of being answered. Depending on what scientist is calculating the statistics, roughly 65-90% of narcoleptics have the disease due to what is likely to be an autoimmune assault on cells that produce a neuromodulator called hypocretin (or orexin). If you are interested in more information about this etiology, there are lots of research papers out there that explain the process and result much better than I can here.

So, what about the other 10-35% of narcoleptics? There isn't nearly as much research or as many answers for these individuals. But Matt has been giving this a lot of thought (in his "spare" time) for the last couple of years. And, lucky for me, I enjoy tossing ideas and hypotheses back and forth with him. Almost as exciting: this is one activity that thankfully does not put him to sleep :o)

Is it a coincidence that Matt is a neuroscience researcher? That I, too, have a doctoral degree (in physiology) with my doctoral and post-doctoral research all focused on the activity of the brain? You know, I don't think so. After all, my man Grissom would say "there's no such thing as a coincidence".

So here we are, spending some of our "fun" time together debatingabout what in the world is going on in Matt's brain. Yeah I know, it's a geeky thing, but discussing neuroscience is something we both love to do. That said, for two people whose only "knowledge" about narcolepsy (and yes, I do use the term "knowledge" very loosely) was gleaned from fictional characters on TV, in movies or books, neither one could have anticipated that this particular scientific mystery would become such a huge focus of our life together.

It's actually a lot easier now than it was the first few years of Matt's illness, particularly the two years Matt struggled to get a diagnosis and the first year of treatment. In those days we were pretty overwhelmed with the chore of trying to adapt to this new reality. And Matt complained. A lot.

To be fair, he was pretty scared. His body and brain had turned traitor on him and he struggled just to do the things he absolutely had to to get through every single day. The disease really claimed our lives completely during that time.

I used to think of it as "all narcolepsy, all the time".

Matt seemed incapable of having a discussion with me about anything but how tired he was, or what weird thing his body was doing now. It's a bit of a relief to be able to focus on other things now. Even if our main focus tends to be that singular question: "what is going on in Matt's brain?".

So, it's become a bit of a thought puzzle. We take it out several times a week, look at the pieces we have, and add any new pieces that we've found since the last time we tried to put it together.

I'd like to talk more about the puzzle next time, but let me leave you this to ponder:

Matt had a terrible couple of days on Friday and Saturday. He had many more attacks of cataplexy and needed more naps than he usually does. Why did Matt have more attacks?

This is the very question that led us to discover a new puzzle piece.

Dinner... on hold

Thank you all -- Matt and I both really appreciate your comments.

We, too, were a bit disappointed that the focus of the ABC program was so narrow, but they clearly wanted to fit our story into their theme for the program "The Brain and Love". We think it unfortunate and misleading that narcolepsy was portrayed as being "strange" and "rare". We really did try to communicate that it is surprisingly common (1/2000 individuals suffer from narcolepsy), and that informing others about this was the reason we said "yes" to doing the program.


Matt's case is a bit atypical in that the cataplexy is more debilitating for him than the excess daytime sleepiness is, especially when he is on his meds. We had about 10 weeks at the beginning of the year when he had trouble getting the anti-cataplexy medication (insurance company change) and that hit him very hard. After the first week or so he was unable to work and what work he did do was pretty much done from home. I hope we don't have a repeat of that this January!

So, about the meds (he has worked really hard to get the right type and balance of stimulants and Tx for cataplexy): he mostly does OK in terms of sleepiness (needs very few naps) and the cataplexy is pretty well controlled for most triggers.

The one trigger that overwhelms him still is very strong positive emotion. We had friends over for dinner last night (first time since last Thanksgiving!) and after visiting with them for about 20 minutes, Matt had to go lay down and was out for about 90 minutes. I had roast chicken getting cold on the counter, pasta water boiling away on the stove, muffins baking in the oven... and was really thankful I had thought to throw together some appetizers. The three of us chatted and snacked until Matt was able to get up again, then we ate dinner in stages, since the chicken and muffins were done but the pasta still needed to be cooked and tossed together.

Some of you had questions for us -- I am on day #2 of a migraine, and have to limit my time at the keyboard, but I will try to get back to you in a day or two.

Meanwhile, thank you for understanding.  And if you get the chance, please go hug someone you love for me. I'm gonna go cuddle the pup for a bit :o)  Isn't she just the cutest puppy ever??!!
 
Hugs!

Not bad, not bad at all...

I had a glorious moment of being more "tech savvy" than Matt this morning. Yes, I am gloating. I need to celebrate those little victories as they happen. No need to remind me that the poor man was half asleep and not at his best, I have no shame when it comes to pouncing on any advantage I can get.

Matt was pretty stoked to see the short clip on the ABC website and to read the accompanying story (http://abcnews.go.com/Nightline/Sleep/oregon-man-paralyzed-feelings-love/story?id=11410135 ). I was "Silly Sweetie, let me show you the rest of story" -smug as I led him to the longer version of the piece.

Rats. I should link to the longer version here, but it's on my DVR. I don't know how to get something off the DVR and onto my blog. Sheesh -- this is totally ruining my whole "tech savvy" claim, isn't it?

Oh well, I did manage to record the piece and surprise Matt with it. And I know that this need to gloat over that very brief victory may seem small-minded of me, but the man is ridiculously smart. He knows his way equally well around a computer or a brain, and he positively slaughters me at "Clue" every single time we play. I, on the other hand, am still in the "trial and error" phase of using our Wii, a full year after we brought it home. And I can't figure out how to share the darn Nightline video clip on my blog.

So, I sat with Matt this morning and showed him the clip they showed on Nightline last night. Amazingly, he actually managed to get through the whole thing without having a full-on attack of cataplexy. When the scenes from our wedding flashed on the screen, he started to slump, and turned away briefly, but he recovered enough to be able to watch the whole thing straight through.

I'm sorry to digress, (again!) but I must say this: it was really fun (for me) to see our young selves laughing and smooching and eating cake as we anticipated our future together. This footage is not an illustration of what we have lost, but a reminder that we have been blessed with many wonderful times together. Those past experiences help to sustain us both through the harder times and they help to remind us of how fortunate we are to be going through this life together.

Back to the episode on Nightline last night: our immediate response -- not bad, not bad at all. Because I am a bit of a skeptic and a worrier, I will withhold final judgement until after tonight's show.

So far, however, the ABC folk have done a pretty decent job of showing what it can be like to live with narcolepsy. They've covered our story with sensitivity and tact when they could easily have gone for schmaltz or sensationalism. I hope that others of you who are living with narcolepsy are finding this to be a reasonably accurate portrayal of the strange constraints this disease often forces upon our relationships.

To those of you who are "narco-curious", please note that this is only one small part of the story. Heck, it's only a small part of the story of Matt and I. There are literally hundreds of thousands of other stories out there. Take a look at some of the other blogs by people living with narcolepsy; several of those who are following this blog are also narcoleptic. Just click on a fellow blogger's name to check out another story. You also might want to drop by the Narcolepsy Network website: http://www.narcolepsynetwork.org/ and browse away.

And if you have any questions -- ask me; I am always just an email away!

I'm pretty good at email. Just don't ask me to program the DVR or turn on the Wii.  ;oD

Sweet dreams!

For your viewing pleasure!

I just received an email from our contact at ABC -- a short version of our interview will be airing on Nightline tonight, 11:30 ish and will be available online after it airs.

Hmmm, I guess it is too late to change our minds about this whole thing ;o) 

I confess to being a bit nervous. I don't believe the film footage contains much new information that we haven't already shared publicly, or that my blog readers haven't already guessed at. But our rather personal story is presented and how it is presented is completely out of our hands. As several recent political examples have shown, it is possible to take one bit of film footage and edit it to tell any one of several stories, some more accurate than others.

OK, I admit it: I'm a teensy bit of a control freak.

And we both really want the right story told. We desperately want our commitment to this project to pay off. We hope that the story that ABC airs will dispel some frustrating myths about people with sleep disorders. (No, narcoleptics are not lazy.) Our intent was for this interview to help others who have been diagnosed with this disease, those who have it but don't know it and are still trying to figure out what is wrong, and those who care for them.

That, and I would prefer to be on camera AFTER I lost the 30 pounds I still need to shed.

Lord, give me the strength to turn my back on the Ben and Jerry's as I impatiently wait for a glimpse at the finished product!

Staying on top of the game...

For you to understand this thing that is keeping me awake nights, I think I must reveal an embarrassing secret that I haven't shared before. About 14 years ago, as we were deciding whether or not to get married, Matt confessed to me that I was NOT the most important part of his life. Seriously. And he said it in front of a witness, the pre-marital counselor whom I had insisted we work with before we said our "I dos".

Not the easiest thing to hear from the person you want to spend the rest of your life with, is it? Especially when the one thing that your beloved is adamantly more committed to than you is also one thing that you very well know may end up tearing you apart. Matt honestly tried very hard to get it through my stubborn mind that if it came down to a choice between our relationship and his career, he would choose his job over me.

Yeah I know, pathetic. But I married him anyway. Why? Because I loved him. Because I didn't really allow myself to believe what he said. Because I chose to believe that if it came down to that choice, he would ultimately choose me. Not terribly fair to Matt. Maybe not fair to me, either, but there you have it.

Oh yeah -- you probably want to know; what is the most important thing to Matt? (Drum roll please): his career in neuroscience research. Yep -- his job. His job was, and perhaps remains, more important to him than pretty much anything.

No, I haven't asked him if I am still #2 in his life. I think I am a bit afraid of knowing that answer. I prefer to remain ignorant, to simply recognize the importance of his career. To support him as he does absolutely everything he can to maintain a career that he believes defines the very essence of who he is.

Frankly I think Matt, in turn, brings a lot to the field of Neuroscience, but that is another post entirely. :o)

So the other night, Matt aired his own doubts. For the first time, he admitted aloud that he thinks that this horrid disease is ultimately going to win. In spite of the medicine regime he is on, Matt fights constant exhaustion and multiple attacks of paralysis every day. It has become so difficult for him to complete everything he needs to do as a member of the research and teaching faculty that Matt has begun to think it unlikely that he will be able to sustain his work in this highly competitive profession.

I hope so very very much that Matt is wrong about this. But I confess: I'm really worried. I toss and turn at night, wide awake as the sleep that eludes me claims his body once again. I hate that it might claim his dreams as well.

I want my husband to have those things that are important to him. And when it comes down to it -- it is unimportant to me whether his career still tops that list. I just want him to succeed, and be happy.

Is this possible?

To paddle or not to paddle?

No, this post is not going to be a debate about the pros and cons of corporal punishment. Nor is it (cover the childrens' eyes please) a discussion of the more varied forms of bedroom play ;oD   So, take your thoughts out of the gutter and focus instead on a blue expanse of water. Picture that beautiful river or lake and then imagine his and hers kayaks gliding side by side, paddled by me and my sweetie.

Matt and I are about as dissimilar as two people who love each other can be: I'm 50(ish), he is still in his 30s; I love all kinds of physical, preferably outside, activities; Matt is content to sit at the computer, immersed in a role-playing game for hours at a time. Yes hours (I really don't "get" it...). I am a committed Christian, he is a professed atheist. Not exactly a recipe for that perfect match.

That said, one thing we both love doing is kayaking. Matt is stronger than I am, so it is a nice workout for me without taxing him much at all. And we both absolutely love, love, love being out on the water. We have great memories of kayak camping with the kids, being followed by seals and otters, and watching the jelly fish float by so close we could have touched them. Once Matt and I took a kayaking lunch-date. We  paddled up to a floating restaurant, tied our boats to the dock, and climbed on up for a lovely lunch. Fish and chips of course! (The paddle back to the marina after lunch wasn't quite so idyllic. I think those fish were paying me back, but that is a whole 'nother story ;o)
But I digress. We both love to paddle. And therein lies the problem: the things that Matt loves most are the very ones that trigger his strongest attacks of cataplexy. So, what do we do?

I have been kind of pushing him to try going kayaking with me. At the same time, we are both worried that it might actually be dangerous to attempt it. Will getting out on the water cause him to have an attack? If he was to have an attack, would it be possible for me to support him and his kayak, keeping him upright until the cataplexy passes? If not, would hitting the water "shock" him out of the attack?

I think we can make it work, but I am not anywhere near to certain we can make it work. Matt, too, would like to try.

Am I a bad wife, to encourage him to attempt this? Am I putting my enjoyment before his safety? How much of this is about me, and how much is about us?

I don't have any answers yet, but I would love your input...

Primetime TV -- ready for this?

What a month we've had! I spent a wonderful week with family at camp in the Santa Cruz mountains. I had oodles of fun with our daughters Bekah and Amanda and their families. I overcame my fear of heights long enough to complete part of a ropes course that spanned the redwoods 40 feet above the ground (patting myself on the back). Don't worry: I have the photos to prove it -- and in a couple of them I actually have my eyes open! ;o) 

I returned home to a frantic week of cleaning and preparing to host a camera crew from ABC's Nightline. A Nightline producer had contacted Matt a few weeks ago to see if we would be willing to share how this disorder has affected our lives together. So, we spent last Saturday-Monday being followed around and filmed by a very sweet ABC cameraman named Karson (Hi Karson!). It was, I admit, rather surreal to be doing those normal, every day sort of chores like cleaning up after the dog (here's a "woof" out to Brooklyn) or washing dishes and look up to see that camera recording every move. I think we managed to live about as normally as possible given the rather other-than-normal presence of that camera.

One really cool, fantastic, wonderful and unexpected benefit of agreeing to do this: Matt and I had to spend lots of time together, much of it reflecting on our relationship and on past times together.

It was hard on Matt. He had lots of attacks of cataplexy, and the cumulative effect of multiple attacks is feeling really, really lousy. I feel a bit guilty, but this past week was rather fabulous for me. It was like I had my Sweetie back, however briefly.

Most of the time went like this: we would do something together, talk briefly about how Matt felt as he focused on us, and then Matt would have an attack. I know it was pretty bad for Matt, but it was so very nice for me. For the first time in far too long, we were in a situation where provoking, experiencing, and reflecting on those things that led us to fall in love, that we struggle to hang on to, was not simply tolerated but actually encouraged. I have missed that part of our lives.

I think we have both come away from this "forced togetherness" with some thoughts to ponder. And it has led me to hope that we can bring a little bit more of that emotional bonding back into our daily lives. We need to talk this through, but I am hopeful.

More on that later, after I have ruminated on it for a bit. In the meantime, you can actually see a bit of this for yourselves as it airs on August 19. Here is the synopsis from ABC's website:

"Thursday, August 19: “Nightline” co-anchor Cynthia McFadden explores the brain in love. She follows a remarkable story of love lost and found again after a traumatic brain injury. McFadden also talks to a man who is literally paralyzed by love—a peculiar brain condition that causes his body to shut down when he experiences feelings of love for his wife."

Please let me know what you think, and we would both really appreciate it if you will share this with your friends and families. We are really trying to get information about this disease out there, especially for those who may be struggling with this themselves!

Hugs,
Trish

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.