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)

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.