I Am Not A Fainting Goat
Posted 04 August 2013 - 11:56 AM
I discuss Narcolepsy and Cataplexy with very few people. 2 of the last few people I have told about Cataplexy said -"like the fainting goats?". http://m.youtube.com...h?v=we9_CdNPuJg
I know they were trying to understand and offer some understanding- but really? I think it says a lot about N awareness- a disease that has been studied for over a hundred years has less public awareness than a !@#% goat.
Fainting goats become rigid. Cataplexy is the opposite- I become flacid.
Would I ever say that to someone- Oh, you have a pot belly, like those Vietnamese pigs? Oh, you broke your leg, should I shoot you like a horse? Oh, your're hungry, here's a trough? Oh, you're pregnant, how many puppies are you having-can I have one? Yowza.
These are good hearted, intelligent people. I know they did not mean to be insulting- and I am not insulted. I am just appropriately frustrated. It makes me realize how little I can expect from people in terms of understanding.
How can I compete with Youtube.
I am trying to come up with some responses that are not insulting but get my message across:
- let it pass without comment- which is what I have done.
- No, it's not like that (and move on)
- What I have is not funny enough for a viral video
- When you say those goats look like they have Cataplexy, N awareness campaigns will have been successful.
- No, its not like that, but thanks for helping me find humor in it. Wait until your prostate gives out/ menopause kicks in, I have a few good jokes saved up. And if you ever have cancer....we'll have some good laughs.
That took the edge off- thanks.
Posted 04 August 2013 - 09:25 PM
We just spent a whirlwind week in San Miguel de Allende where we lived for nine years. All seven of the close friends that we socialized with, know and understand my problems. I relaxed, cut loose and laughed so much (with obvious consequences) that my sides ached. It was exhilarating and exhausting...bless 'em all.
As I get older, I'm just letting it happen and trying not to be so protectively rigid in my emotions. Let them see it...then you'll find out who your real friends are. I also think Provigil (nearly eight weeks at 100 mg) is making me braver...it's definitely the first time I've ever actually seen the five hour drive (in both directions). Hoorah!
Posted 05 August 2013 - 09:49 AM
It can be rough. Hank, I feel your frustration.
Just telling people who I've known for years, or those who I've just met, either that I've discovered the disease that I have, and/or that it is, Narcolepsy with Cataplexy; most always gets in response, "so, you're always tired" (usually with a smile).
Then I attempt to explain and describe, "not exactly, actually."
A few of the things that I then say are along these lines:
-"I can not get restorative sleep, I typically awaken from 8 hours in bed, feeling like I've maybe slept 3. And, I tend to need 1 to 3 hours of sleep sometime throughout each day." >Doesn't really get much across.
-"The real issue I have is with Cataplexy though, which is a minimal to complete, temporary muscle paralysis triggered by pleasures." (saying the italicized part slowly, clearly and loudly) >Starts to get point across, at times.
-Adding, "imagine collapsing and going entirely paralyzed from pleasure..." >That part, helps with some people (sigh).
The close minded, know it all types, are the ones who don't bother trying, nor attempting at all, to begin to understand. The judging is so painful, and never-ending-endless.
Once a person witnesses a collapse, they tend to seem a bit more cautious, not even necessarily more understanding though; some yes, some no...
There are known knowns, known unknowns, and unknown unknowns; we seem to fit the latter or something, more often than not.
Posted 05 August 2013 - 10:07 AM
As for any idea for a youtube video, you could basically drop a camera into a black space (or blurred with some visual elements) along with hearing, perhaps having the thoughts in your head being spoken; that is, at the instant of pleasure, or interaction triggering Cataplexy.
An attempt at shooting a sort of, 'first person' experience, of such.
I'd be glad to try, I could easily get some helmet cam skateboarding clips. Say, when I land the trick, I at the first chance, step off my board and go down to the ground. I'd be thinking (there could be words spoken along the lines): "darn it why'd they holler, dang flickering muscles, focus on center/core, breathe in, breathe out, breathe in, breathe out, here they come, alright gonna get up..." Then I'd get up and roll away.
I'll make this! For the above wording, perhaps I'll use 'text on screen' rather than actually speaking it...
Will post the link promptly (probably will have it done within days)!
Posted 05 August 2013 - 10:51 AM
It woulda been a doozy.
Posted 05 August 2013 - 04:36 PM
Here it is (I had nothing better to do with myself today so... It's a bit long with descriptions and what not, but oh well, anyone actually interested 'may' sit through it?!.):
Posted 05 August 2013 - 05:51 PM
I just want to clarify- you mentioned that this was a "re-enactment". Is this what it was like for you today skateboarding or was this a re-enactment of what Cataplexy was like when it was not controlled? Not sure.
Thanks for doing this either way. There is such a lack of actual video clips available of Cataplexy. The text book descriptions just do not convey what it is in real life.
I can see similarities in the way you and I tend to fall. I did not think I had Cataplexy from the text book description because I did not just collapse. Sooo many time, I just had falls during sports (especially down hill skiing). It would take me a few seconds to get up and I always thought I just had the wind knocked out of me. I looked clumsy or lazy to others because it is slower and looser than a regular fall. More like turning the lights off with a dimmer switch rather than an on/off switch, so to speak.
Posted 05 August 2013 - 06:03 PM
They are re-enactments that I did this morning. For years though, this was happening to me, A Lot.
I learned to get off the board in time, to let myself down and sprawl out, which allowed my muscles to come back quickly.
One time, I did Cataplexy immediately in the middle of a trick, but thankfully I fell from the coping straight down into the transition, and just slid down with no harm - that was in fact when I decided I had to walk away entirely. Months later, Cataplexy had regressed and I was able to return to skating.
Today, I hardly have episodes, yet I don't skate a lot, nor with many people as people influence much more Cataplexy occurring.
Occasionally these days, I'll have a head droop or upper body flickering of muscles but it is not like it was, Thankfully.
There were so many times, while skating, that I couldn't even imagine how odd I must have looked, during some of the Cataplexy trick aftermaths. My face just spasm'ing/muscle-less face...
And, I completely hear ya, on the last bit there, regarding 'text book descriptions.'
I feel as though there really should be a broad 'terminology' update or re-defining, as minimal versus severe Cataplexy is something real and far apart, and between.
For me, I can not imagine actually falling asleep, within/during a Cataplexy attack/episode, that seems frightening; and I would consider such to be the most 'severe' form.
I do refer to collapsing as 'severe' though often, as it can be in many ways, too...
Posted 05 August 2013 - 06:22 PM
You mentioned you cannot imagine falling asleep during cataplexy. The end of April I had a full collapse while walking my dogs. I was down completely for 2 minutes- eyes closed, couldn't move a muscle. I could hear and feel my dogs pulling on the leashes but I kind of "faded" in the middle of the 2 minutes.
I would not have known how much time had passed except for a neighbor who saw me go down. When she came to me, I could hear her voice asking if I needed an ambulance. I mumbled "give me a minute". Then I could open my eyes and saw her ankles, but still couldn't move. I could see my legs not moving while I tried to make them move. When I saw my foot start to move, I knew I was coming out of it. A few seconds later I was back on my feet. My neighbor was very supportive, which is very encouraging and I am still appreciative of her kindness (and not freaking out or calling an ambulance). That was the first time I had a full collapse, knew what it was and had a witness- all at the same time. I was not embarrassed- a success in its own right.
I was very calm in my own mind during this- so I must have been "sleep-ish" during the 2 minutes. Cataplexy continues to be such a mystery and never the same way twice. Almost like a tornado that hits a different house every time.
Posted 05 August 2013 - 07:40 PM
Interesting story and yikes, 2 minutes...
Am glad that it didn't have any worse outcome, I think of both, the dogs and an ambulance, specifically.
Sounds like a great neighbor possibly too. Most of my neighbors would probably run in their houses and close the door, or perhaps a few would do so after checking my pockets...? (probably over-stating that, I hope so at least, yet I hope to never have to find out.)
The worst that I can recall, which I had, was probably between 45-60 seconds of more or less being paralyzed.
A lot of what had to do with it being as bad as it was, was me fighting the Cataplexy while I was still able to resist (somehow, that instant, dragged out) prior to when I managed to stumble over and sort of jump and/or leap and collapse towards, and onto, my bed (which was a mattress on the floor, at the time).
I hit hard though, because mid fall I'd gone entirely paralyzed, I landed in a very contorded position too.
I could hear and see, plus I kept resisting (trying to break out of it) as my muscles were beginning to return, which caused weird jerks to occur and for the paralysis to continue, more fiercely.
It just is, whatever it is.
Posted 05 August 2013 - 09:17 PM
Hank, I laughed out loud at your description of falling while skiing. Been there...spectacular a$$ over teakettle falls that were so personalized that friends would call out my name from the chairlift. So completely dressed against the weather as to be unidentifiable by anything except the manner in which I fell. I'd rather go down and slide on snow though...softer than concrete.
As guys, neither of you may have experienced this little hazard...being enveloped in a bear hug to stop you from collapsing. Kind of nice except for the part where your face gets squashed against a broad chest that prevents you from breathing.
You guys appear to go down like rag dolls with total loss of muscle tone. I jerk like a puppet whose strings are being yanked.
Posted 05 August 2013 - 10:04 PM
It all depends on whose broad chest my face would get squashed against- I am a married man. Ha- you gave me a good laugh
It is so interesting how C is a bit different for each of us- no wonder it is challenging to figure out.
Posted 05 August 2013 - 10:38 PM
Haha, Ferret, I've not experienced the enveloping!
It definitely is a good skatepark, so thankful for it being there (nearing the 10 year anniversary!).
I helped construct and design this thing (proud of having been a part of such):
(I'm in this video, sweaty shirt and running, getting dirty with mud! This was before I'd begun collapsing, very often...)
(I'm not in this video, however Bart is my good friend and you can see the finished product)