"I don't know why she hitted me"

For those of you who aren't narcoleptic, I have a question: do you ever have trouble sleeping? I do. Last night, as I listened to Matt snore away, I struggled to try to rid my brain of the words of young girl who was being examined because of large bruises covering her back. Throughout the exam she chattered away happily with the doctor and nurse, but all the while insisting she didn't know how she got the injuries.

Then, spontaneously, she looked up with a frown and stated simply "I don't know why she hitted me".

A little background: I participate on a board that reviews the cases of kids in foster care. Once a month I receive a stack of case histories to study prior to meeting with the other board members, parents, a representative of DHS, and lots of lawyers. It would not be hyperbole to say that many of these children's life stories are absolutely heartbreaking. I've been doing this on and off for about 6 years, but that fact never changes.

"I don't know why she hitted me": The statement of a little girl just trying to figure it out.

I don't know why her mom "hitted" her either. By all accounts, this mom loves her kids. She's been offered and has engaged in treatment (including anger management and parenting classes) but continues to remain totally invested in an abusive "disciplinary" style. We aren't talking gentle pats on the bottom here. There are allegations this mom had actually stomped on her daughter's back.

I imagine that this positively sickens you to think about. I know it does me.

Thank God I have never been so out of control that I harmed any of my children physically. Nor have I suffered such severe physical abuse. However, I can point to many times in my life when I have allowed myself to take a course of action that I knew was destructive to myself and/or to my children.

There were years when I absolutely could not be in the same room with their father without feeling so angry that I was constantly on the verge of losing control. And lose control I often did.

I knew without doubt that standing witness to me fighting with their dad was unhealthy and destructive for my kids, but I repeatedly gave in to the negative feelings and acted on them. Most of the time I honestly felt completely unable to stop this cycle. Heck, it remains a struggle for me sometimes even now, despite years of prayers and talk therapy.

Despite the fact that I love my kids more than life itself, I have repeatedly failed to act in their best interests.

No, I'm not suggesting that my actions (or inactions) were as blatantly destructive as those of the mother of this child. I am just "wondering aloud" at the overwhelming power my emotions had over my actions.

As humans, we like to think we are relatively "evolved". But those baser instincts, evidenced by the overriding of cognition by more primitive, "emotional" parts of our brains, suggest we still have a lot of work to do.

I know I do.

More later -- until then, stay safe. And if you have an opportunity to make a foster child's life even the teeniest bit better, please do so :o)

Maybe not?

Hi all,

Been a bit crazy around here these last couple of months. I've been working a lot with HAS (http://www.hasolutions.org/) and started doing some consulting with OHAC (http://www.ohac.org/). Add the pup, the son who moved back in with us Dec. 1st, two out of town trips, and time spent on a couple of other volunteer commitments and the sum is a crazy (and very tired) Trish. Oh yes, the narcoleptic husband who SNORES very LOUDLY doesn't help ;o) 

A confession about that last bit: there have been many nights when, somewhere around 3 a.m., my pillow has started looking more like a great tool for smothering my Sweetie than for resting my head. No, I'm not going to act on that urge, but I sure do hope he gets his C-pap fixed soon. Or I find some suitably comfortable ear plugs.

I don't mean to complain, just wanted to explain why my posts have been so infrequent, especially of late.

So... in case you've forgotten, let's set the stage: last time we checked in, I shared my optimism about our successful handling our November trip to California. Matt actually managed to make it through the entire Thanksgiving dinner with kids, grands and dad. I thought that, just perhaps, we might finally be figuring out how to live, in public and with family, with this disease.

Wishful thinking, it turns out. The last month and a half have been pretty bad for Matt. I have worried quite a bit that he might need to tweak his meds again. It turns out that he has been worrying about something I hadn't even allowed myself to consider: perhaps he hasn't hit the bottom quite yet. He might actually still be getting worse.

Stay tuned; more later. And this isn't necessarily bad news: more data means more information, and more information brings us closer to more effective treatment. And maybe, eventually, if we are very fortunate: a cure.

But for now, rest assured in knowing that we are OK. We will continue to be OK, and we will continue to be together. This thing is not going to beat us.

Hmmm, I take it back. We are BETTER than OK!

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.