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
Showing posts with label dinner. Show all posts
Showing posts with label dinner. Show all posts
Saturday, December 4, 2010
Friday, September 10, 2010
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
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
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??!!
Hugs!
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!
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