Thank you for visiting!

Thank you for visiting!

Friday, August 27, 2010

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!

Monday, August 23, 2010

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)

Sunday, August 22, 2010

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.

Saturday, August 21, 2010

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??!!

Thursday, August 19, 2010

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 ( ). 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: 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!

Wednesday, August 18, 2010

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!

Sunday, August 15, 2010

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?

Friday, August 13, 2010

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...

Saturday, August 7, 2010

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!