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

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?

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!