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.
Showing posts with label hallucinations. Show all posts
Showing posts with label hallucinations. Show all posts
Tuesday, October 19, 2010
Saturday, September 18, 2010
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!
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!
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!
Hugs,
Trish
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!
Hugs,
Trish
Friday, July 2, 2010
Huh? What is Narcolepsy with Cataplexy anyway?...
We've been living with this for so many years that I tend to forget how confusing all of the odd terms for the various symptoms of Narcolepsy can be. Several of you have shared that you don't know much about this disease, so I thought you might be interested in a bit more background information. I think it will make it easier for you to understand the effect that the disease has on the lives of those who have it or who love someone who does.
The following brief description (and more) may be found on the "Narcolepsy Fact Sheet" published online by the National Institute for Neurological Disorders and Stroke (NINDS):
"Narcoleptic sleep episodes can occur at any time, and thus frequently prove profoundly disabling. People may involuntarily fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving an automobile or operating other types of potentially hazardous machinery. In addition to daytime sleepiness, three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening; and brief episodes of total paralysis at the beginning or end of sleep."
You may find some of the best descriptions of symptoms and information about narcolepsy and cataplexy at: http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#139493201
To summarize, the symptoms of narcolepsy include:
A person with Narcolepsy may have some or all of these symptoms in varying degrees of severity. Matt has experienced all of them (although I confess that I thought that the hallucinations were a side effect of the medications he has to take). I do like to tease him that he gets the relatively "cool" symptoms when he describes his hallucinations, citing the amazingly bright colors and visual distortion that occur ;o)
There is no cure for Narcolepsy though there are treatments available that ameliorate EDS and cataplexy. Matt takes multiple medications daily to treat these symptoms. Fortunately the meds have enabled him to continue to work, but they don't prevent attacks completely. Like most narcoleptics, the events that trigger his most debilitating attacks of cataplexy are those that cause him to feel strong positive emotions. If you have read through my previous posts you will have a good idea of what these sort of triggers are. They include activities such as hugs or hand holding, celebrating (or simply reminiscing about) happy occasions, and socializing with family or friends.
Not surprisingly, this disease has had the effect of isolating Matt from continuing most relationships.
BTW -- we are not alone in this. Narcolepsy is much more common than most people would guess, directly affecting about 1/2000 Americans.
And so, I blog.
I share this experience with you, hoping as I do so that it will help you understand the disease, my husband, and our life together. Perhaps you will have wisdom or relationship experience to share that will help guide Matt and I as we work through difficult decisions: how much (if any) shared family time can Matt commit to, and how do we maintain our relationship when simply being together tends to make him sick?
I share this also with the hope that others who live with Narcolepsy will find some solace in knowing that they are not alone. I am stubbornly hanging on to the belief that it is possible to make this continue to work, that there is a compromise place where we can find an appropriate balance between relationship and isolation, love and avoidance of all things lovely.
Thank you for joining me.
The following brief description (and more) may be found on the "Narcolepsy Fact Sheet" published online by the National Institute for Neurological Disorders and Stroke (NINDS):
"Narcoleptic sleep episodes can occur at any time, and thus frequently prove profoundly disabling. People may involuntarily fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving an automobile or operating other types of potentially hazardous machinery. In addition to daytime sleepiness, three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening; and brief episodes of total paralysis at the beginning or end of sleep."
You may find some of the best descriptions of symptoms and information about narcolepsy and cataplexy at: http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#139493201
To summarize, the symptoms of narcolepsy include:
- Excessive daytime sleepiness (which you may find referred to as "EDS")
- Cataplexy -- An episodic paralysis of voluntary muscle movement. Matt experiences cataplexy multiple times a day (despite the fact that he takes the medication that is most effective in treating it). Unfortunately, he suffers from the most severe form of catplectic attacks. When experiencing an attack of cataplexy, Matt is unable to move, speak, or keep his eyes open. However, during this time he is fully conscious of what is going on around him. Although cataplexy can occur spontaneously, it is more often triggered by sudden, strong emotions such as fear, anger, stress, excitement, or humor.
- Hallucinations
- Sleep paralysis is similar to cataplexy in that it is experienced as a paralysis or inability to move. As the name implies, it occurs just prior to falling asleep or waking up.
A person with Narcolepsy may have some or all of these symptoms in varying degrees of severity. Matt has experienced all of them (although I confess that I thought that the hallucinations were a side effect of the medications he has to take). I do like to tease him that he gets the relatively "cool" symptoms when he describes his hallucinations, citing the amazingly bright colors and visual distortion that occur ;o)
There is no cure for Narcolepsy though there are treatments available that ameliorate EDS and cataplexy. Matt takes multiple medications daily to treat these symptoms. Fortunately the meds have enabled him to continue to work, but they don't prevent attacks completely. Like most narcoleptics, the events that trigger his most debilitating attacks of cataplexy are those that cause him to feel strong positive emotions. If you have read through my previous posts you will have a good idea of what these sort of triggers are. They include activities such as hugs or hand holding, celebrating (or simply reminiscing about) happy occasions, and socializing with family or friends.
Not surprisingly, this disease has had the effect of isolating Matt from continuing most relationships.
BTW -- we are not alone in this. Narcolepsy is much more common than most people would guess, directly affecting about 1/2000 Americans.
And so, I blog.
I share this experience with you, hoping as I do so that it will help you understand the disease, my husband, and our life together. Perhaps you will have wisdom or relationship experience to share that will help guide Matt and I as we work through difficult decisions: how much (if any) shared family time can Matt commit to, and how do we maintain our relationship when simply being together tends to make him sick?
I share this also with the hope that others who live with Narcolepsy will find some solace in knowing that they are not alone. I am stubbornly hanging on to the belief that it is possible to make this continue to work, that there is a compromise place where we can find an appropriate balance between relationship and isolation, love and avoidance of all things lovely.
Thank you for joining me.
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