From: JosephKK on
On Sat, 19 Dec 2009 13:07:38 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:

>On Sat, 19 Dec 2009 12:11:24 -0800, JosephKK wrote:
>
>>On Sat, 12 Dec 2009 18:35:00 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:
>><snip>
>>>Probably will need to do a 'shrink' on it, though. It's too big as it
>>>is. Much too big. She won't wear it for long. But I'm going to try
>>>it out, anyway. Still looking for auto-mute ideas, though. This
>>>isn't an either-or situation.
>>
>>It does not necessarily have to be a watch, it could be a necklace or
>>a tiara.
>
>She loves watches and takes mine off and puts it back on, a lot. I've
>even seen her 'try' to consider the idea of putting it on her own arm.
>But only for a moment.
>
>It took us many, many years just to get her to wear a t-shirt. As I
>think I already mentioned, she is very 'sensitive' to stuff that
>touches her. Most types of cloth are impossible and we have to
>carefully select textures and other factors. She still won't wear
>anything more than a long t-shirt and underpants, except in
>contained/controlled situations (such as driving in the car.)
>
>A necklace or tiara is not probably not happening. But every idea may
>be worth a try.
>
>Jon

Very challenging indeed. Even trying that she is "a princess" only
while wearing the gizmo (or one or more of several?) may not work.
From: Jon Kirwan on
On Mon, 21 Dec 2009 22:58:43 -0800,
"JosephKK"<quiettechblue(a)yahoo.com> wrote:

>On Sat, 19 Dec 2009 12:50:57 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:
>
>>On Sat, 19 Dec 2009 12:05:51 -0800,
>>"JosephKK"<quiettechblue(a)yahoo.com> wrote:
>>
>>>Myodetection might be possible.
>>
>>Any decent references? I've no idea what it is.
>>
>>Jon
>
>Basically it is the electric potentials that can be measured in
>correlation of muscle contraction. It is a well known interference
>for ElectroEncephalaGrams (EEG).
>
>Not much quality stuff on a quick Internet search:
>
>http://openprosthetics.org/myoelectric
>
>http://ieeexplore.ieee.org/Xplore/login.jsp?url=http%3A%2F%2Fieeexplore.ieee.org%2Fiel5%2F10755%2F33900%2F01616206.pdf&authDecision=-203

I'll keep this topic in mind and discuss it with a neurologist and
endocrinologist early next year (Feb.) I'm trying to get a project
started with them and a few researchers up at UofW, anyway, on a
different topic related to nano-encapsulation. So this sounds like
something they can either inform me a little about or else refer me to
someone they know who can do better. Sounds like something I'm not
going to have an answer about right away, but might pay off to learn
about at least. Thanks for the term. I'll run with it.

Jon
From: Jon Kirwan on
On Mon, 21 Dec 2009 23:10:06 -0800,
"JosephKK"<quiettechblue(a)yahoo.com> wrote:

>On Sat, 19 Dec 2009 13:07:38 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:
>
>>On Sat, 19 Dec 2009 12:11:24 -0800, JosephKK wrote:
>>
>>>On Sat, 12 Dec 2009 18:35:00 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:
>>><snip>
>>>>Probably will need to do a 'shrink' on it, though. It's too big as it
>>>>is. Much too big. She won't wear it for long. But I'm going to try
>>>>it out, anyway. Still looking for auto-mute ideas, though. This
>>>>isn't an either-or situation.
>>>
>>>It does not necessarily have to be a watch, it could be a necklace or
>>>a tiara.
>>
>>She loves watches and takes mine off and puts it back on, a lot. I've
>>even seen her 'try' to consider the idea of putting it on her own arm.
>>But only for a moment.
>>
>>It took us many, many years just to get her to wear a t-shirt. As I
>>think I already mentioned, she is very 'sensitive' to stuff that
>>touches her. Most types of cloth are impossible and we have to
>>carefully select textures and other factors. She still won't wear
>>anything more than a long t-shirt and underpants, except in
>>contained/controlled situations (such as driving in the car.)
>>
>>A necklace or tiara is not probably not happening. But every idea may
>>be worth a try.
>>
>>Jon
>
>Very challenging indeed. Even trying that she is "a princess" only
>while wearing the gizmo (or one or more of several?) may not work.

She wouldn't understand the concept... at least, not right away. She
does 'get things,' though. We never know what she wants to spend time
on until she shows us, so we continually supply different things to
see what catches. There are some movies she seemed to like -- Roger
Rabbit, for example. But often for movies, at first, it seems more
about sounds and music and perhaps some basic actions. But after
watching some movies maybe 50 or 100 times, she will start laughing at
the right places or changing moods where others might, which tells me
that over time the broad strokes in the movie begin to come across
almost like they do with many 'normal' folks and she understands a lot
more. But some things may take years. "A princess" feeling is
something I suspect would take a very long time to instill.

Something I haven't mentioned is that in all her 25 years she has
never reacted to physical pain -- severe or otherwise -- by crying or
crying out like many will. She has accidentally pressed up on a
searing hot piece of metal and sustained 3rd degree burns without us
knowing, right away. She laughed and did things like always, the only
difference we noticed being that she seemed to react a little more
negatively to abrupt sounds, like a phone. Now, she has always
freaked out with a phone ringing or a dog barking and so on. Noises
that most of us accommodate, often even losing notice to us like that
of a closing door, will send her reeling and freaking out. That is,
if those sounds aren't under her control. But we can tell when she is
a little _more_ like that than other times. And in this case, we
noticed and started looking more closely at her for physical injury.
Sure enough, there it was. She sees no reason to cry, no purpose --
she knows it doesn't change the pain and she doesn't understand that
sometimes we can help. So she just grins and bears it. Very much, I
imagine, as a great many creatures do in the wild. (A cat will often
get an abscess that "blows out" their cheekside. But they don't
complain, don't cry, don't moan. They move on. She is very much like
that.

When she broke her radius and ulna in one grand mal seizure a year ago
last October, and I discovered it as I helped her through the seizure,
she woke up from the seizure that time quite quickly. But while I was
totally screaming to my wife to find a 90-degree angled piece of
Styrofoam in which to rest her broken arm, and going nuts trying to
keep her from moving it in the meantime to mitigate muscle and tissue
damage from grinding against the broken sharded ends of bone, she was
just curious. She looked at her arm, tried to use it, found it odd,
but never for a second showed the slightest signs of a grimace or
crying or anything. Curiosity, almost. I got her packed up, taped,
dressed and started taking her into the car to bring her to the
closest emergency center 5-minutes away, and as she tried to use that
arm to help me close the car door.

Now, I _know_ for a fact she feels pain and feels worse pain more.
That comes from other observations. But she does NOT react to it,
even of the most painful variety, except with an almost stoicism and a
remarkable clarity of thinking about it. It's one of those things I
keep marveling about, trying to grasp it more fully. It's a stand out
thing about her.

She also _cares_ a great deal, about animals and people and things. If
anything is damaged or fails to work, she brings it to me to fix. If
an animal is hurt, she tries to get me to deal with it. If one of us
is hurt, she carefully watches and will be far more sensitive to us
than otherwise she might be.

Regarding the noises that disturb her and the fact that I earlier
mentioned (or hinted) that ones she makes don't disturb her (as much,
anyway), it's like that in all of us. Just very much heightened in
her. For example, consider the idea of someone coming up behind you
with a firecracker and setting it off without you knowing it. Your
reaction is sudden and quite often filled first with fear and then
quickly after with anger. Not everyone's reaction will be exactly the
same and we do "learn" and "adapt" -- especially if this happens a lot
to us. But if you aren't pre-conditioned, that event includes
frustration, possible fear, and quite likely anger -- with anger
perhaps taking a second or two to arrive in clear form. Now consider
the idea that someone tells you first and instead of setting it off in
back of you, they do it in front of you where you can see the fuse
dwindle down. Let's say, same distances to your ears either way. In
this case, you can mentally 'steel' yourself and the impact is far far
less. We are able to "prepare" ourselves, and this preparation no
doubt in my mind involves physical changes that our brain initiates in
anticipation which helps to mitigate the event's necessary chain of
triggers within our bodies... perhaps with the early release of COMT
and MAO, though I'm not sure about exactly what mechanisms are in
play. I just know they work.

She's like that, too. If she is the reason or cause, she is much
better able to handle it. But if the sound is not in her control -- I
close the door, she doesn't, for example -- then her reaction is
strong... very strong.

On a more mundane note, we do this all the time with the closing of
doors. When a door closes behind us, the sounds reach our cochlea and
almost immediately, at a very low level, signals to the pituitary
gland to trigger an adrenaline (epinephrine) release. This is
measurable, by the way. Shortly later, higher functioning levels in
the brain associate the sudden sound with a door closing and another
signal arrives, triggering the release of digestive enzymes like COMT
and MAO. Although there is a measurable pulse and decay, we learn to
completely ignore the visceral responses over time. Yet they remain,
while many of us almost completely subsume the event into near
unconsciousness unless it is a particularly remarkable closing of a
door.

Now imagine that she does NOT have this follow-on mechanism -- some
part of it is broken. Every time I say something, it is a series of
sounds... rata-tata-rata-da-da-da... that reach her ears and perhaps
trigger epinephrine releases. Every time a phone rings... Every time
a door closes... every time something sound-wise takes place that has
a rapid attack (in the attack-decay sense) to it, she gets "hit" with
adrenaline. But she has no mechanism for COMT/MAO enzyme triggers, so
the decay is much, much slower to leave. And she is in a heightened
state of anxiety that doesn't readily leave, so new "impacts" add and
add.

It's a lot like that, I think.

Jon
From: Jon Kirwan on
On Tue, 22 Dec 2009 05:57:29 -0800, I wrote:

><snip>
>Now, I _know_ for a fact she feels pain and feels worse pain more.
>That comes from other observations. But she does NOT react to it,
>even of the most painful variety, except with an almost stoicism and a
>remarkable clarity of thinking about it. It's one of those things I
>keep marveling about, trying to grasp it more fully. It's a stand out
>thing about her.
><snip>

Something I thought to add. I also do not respond to pains as many
others do. Mostly, I think, because my responses are viscerally more
analytical. A story illustrates.

We enjoy all wildlife and spend a lot of time in the woods just
watching or studying animals in their behaviors, talking about what we
observe, theorizing, and just plain loving the experiences. This got
us to a point in our lives where we were doing "animal aid" volunteer
work and for a time my wife and I became the contact point for 911
calls regarding "wild animals." I was responding to a wild raccoon
call in a new housing development near a woods and trapped the _huge_
raccoon against a fence and house corner. I had on motorcycle leather
gloves and had towels with me (very useful) and I managed to engage it
and subdue it. (Raccoons, especially big ones, are very powerful. But
a knee in their back with the weight of a human behind it completely
sprawls them if applied craftily and well.) While wrapping it with
the towels (much like a straight jacket idea), I made a mistake and
allowed it's mouth to grasp my thumb. It's teeth went straight
through the leather glove and deeply enough to fully engage its teeth
right into some of my bones. It was quite painful.

However, I felt _no_ emotion whatsoever. Not immediately, not later.
No anger at the animal, at all. (I never have.. it is something I
simply lack.) I completely understood what it had done and why it had
done it. It was no fault of the raccoon and my mind was _purely_ and
_only_ working on the details I'd need to consider in order to
mitigate damage to me and to finish the job at hand. I had no other
emotions operating. None, at least, that I was aware of.

There have been many other such events in my life like that. We deal
with animals and I'm not immune to injuries -- for example, I'm
missing the tip of my right index finger from a chipper shredder event
some years back and I've run another finger into a running saw (mostly
okay, now.) A long life is not unlike that. But I remember this one
in particular because it was the first time I realized that other
people would likely feel anger towards an animal that attacked them.
And I was in my 30's before it ever dawned on me that anyone could
feel anger for that reason. Getting angry at an animal or inanimate
object when injured seems irrational and illogical to me and makes no
sense, whatsoever. And I certainly do NOT have any visceral (gut)
reactions I know about in that regard. These kinds of things are
simply "problems to solve" to me. Nothing more. Yes, I feel the
pain. And yes I react to it! Just without the confounding emotions
others seem to have.

It was afterwards, talking with others about the raccoon event, that
they tried to empathize with me and talk about "boy, you must have
been very angry." It was only in my own mystery about why they'd say
so and in the ensuring questions I asked them and their own answers
that it slowly began to dawn upon me that others would feel such
emotions towards creatures and objects (like cupboard doors they
bonked into at times.) I still find that a bit of a mystery, because
I can't find it inside myself to understand it in a gut-way.

Now, for me, people are entirely a different thing. I can get quite
upset at people doing terrible things to others, or me. Because I
know they know better. And I believe I can feel very much like others
about that. Visciousness, mean-spiritness, disingenuousness, climbing
on the backs of others, and so on are very human behaviors I do get
angry about and despise. It's just that I know a table or door isn't
viscious and cannot be. Similarly, most animal behaviors as well. So
there is nothing there to get angry at. And anger is a higher level
brain function for me -- it requires analysis to feel. It _never_
occurs to me at a primal-response level, before higher functioning
gets a chance to operate.

Which makes me wonder how much of her responses are like mine.

Jon
From: JosephKK on
On Tue, 22 Dec 2009 05:57:29 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:

>On Mon, 21 Dec 2009 23:10:06 -0800,
>"JosephKK"<quiettechblue(a)yahoo.com> wrote:
>
>>On Sat, 19 Dec 2009 13:07:38 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:
>>
>>>On Sat, 19 Dec 2009 12:11:24 -0800, JosephKK wrote:
>>>
>>>>On Sat, 12 Dec 2009 18:35:00 -0800, Jon Kirwan <jonk(a)infinitefactors.org> wrote:
>>>><snip>
>>>>>Probably will need to do a 'shrink' on it, though. It's too big as it
>>>>>is. Much too big. She won't wear it for long. But I'm going to try
>>>>>it out, anyway. Still looking for auto-mute ideas, though. This
>>>>>isn't an either-or situation.
>>>>
>>>>It does not necessarily have to be a watch, it could be a necklace or
>>>>a tiara.
>>>
>>>She loves watches and takes mine off and puts it back on, a lot. I've
>>>even seen her 'try' to consider the idea of putting it on her own arm.
>>>But only for a moment.
>>>
>>>It took us many, many years just to get her to wear a t-shirt. As I
>>>think I already mentioned, she is very 'sensitive' to stuff that
>>>touches her. Most types of cloth are impossible and we have to
>>>carefully select textures and other factors. She still won't wear
>>>anything more than a long t-shirt and underpants, except in
>>>contained/controlled situations (such as driving in the car.)
>>>
>>>A necklace or tiara is not probably not happening. But every idea may
>>>be worth a try.
>>>
>>>Jon
>>
>>Very challenging indeed. Even trying that she is "a princess" only
>>while wearing the gizmo (or one or more of several?) may not work.
>
>She wouldn't understand the concept... at least, not right away. She
>does 'get things,' though. We never know what she wants to spend time
>on until she shows us, so we continually supply different things to
>see what catches. There are some movies she seemed to like -- Roger
>Rabbit, for example. But often for movies, at first, it seems more
>about sounds and music and perhaps some basic actions. But after
>watching some movies maybe 50 or 100 times, she will start laughing at
>the right places or changing moods where others might, which tells me
>that over time the broad strokes in the movie begin to come across
>almost like they do with many 'normal' folks and she understands a lot
>more. But some things may take years. "A princess" feeling is
>something I suspect would take a very long time to instill.
>
>Something I haven't mentioned is that in all her 25 years she has
>never reacted to physical pain -- severe or otherwise -- by crying or
>crying out like many will. She has accidentally pressed up on a
>searing hot piece of metal and sustained 3rd degree burns without us
>knowing, right away. She laughed and did things like always, the only
>difference we noticed being that she seemed to react a little more
>negatively to abrupt sounds, like a phone. Now, she has always
>freaked out with a phone ringing or a dog barking and so on. Noises
>that most of us accommodate, often even losing notice to us like that
>of a closing door, will send her reeling and freaking out. That is,
>if those sounds aren't under her control. But we can tell when she is
>a little _more_ like that than other times. And in this case, we
>noticed and started looking more closely at her for physical injury.
>Sure enough, there it was. She sees no reason to cry, no purpose --
>she knows it doesn't change the pain and she doesn't understand that
>sometimes we can help. So she just grins and bears it. Very much, I
>imagine, as a great many creatures do in the wild. (A cat will often
>get an abscess that "blows out" their cheekside. But they don't
>complain, don't cry, don't moan. They move on. She is very much like
>that.
>
>When she broke her radius and ulna in one grand mal seizure a year ago
>last October, and I discovered it as I helped her through the seizure,
>she woke up from the seizure that time quite quickly. But while I was
>totally screaming to my wife to find a 90-degree angled piece of
>Styrofoam in which to rest her broken arm, and going nuts trying to
>keep her from moving it in the meantime to mitigate muscle and tissue
>damage from grinding against the broken sharded ends of bone, she was
>just curious. She looked at her arm, tried to use it, found it odd,
>but never for a second showed the slightest signs of a grimace or
>crying or anything. Curiosity, almost. I got her packed up, taped,
>dressed and started taking her into the car to bring her to the
>closest emergency center 5-minutes away, and as she tried to use that
>arm to help me close the car door.
>
>Now, I _know_ for a fact she feels pain and feels worse pain more.
>That comes from other observations. But she does NOT react to it,
>even of the most painful variety, except with an almost stoicism and a
>remarkable clarity of thinking about it. It's one of those things I
>keep marveling about, trying to grasp it more fully. It's a stand out
>thing about her.
>
>She also _cares_ a great deal, about animals and people and things. If
>anything is damaged or fails to work, she brings it to me to fix. If
>an animal is hurt, she tries to get me to deal with it. If one of us
>is hurt, she carefully watches and will be far more sensitive to us
>than otherwise she might be.
>
>Regarding the noises that disturb her and the fact that I earlier
>mentioned (or hinted) that ones she makes don't disturb her (as much,
>anyway), it's like that in all of us. Just very much heightened in
>her. For example, consider the idea of someone coming up behind you
>with a firecracker and setting it off without you knowing it. Your
>reaction is sudden and quite often filled first with fear and then
>quickly after with anger. Not everyone's reaction will be exactly the
>same and we do "learn" and "adapt" -- especially if this happens a lot
>to us. But if you aren't pre-conditioned, that event includes
>frustration, possible fear, and quite likely anger -- with anger
>perhaps taking a second or two to arrive in clear form. Now consider
>the idea that someone tells you first and instead of setting it off in
>back of you, they do it in front of you where you can see the fuse
>dwindle down. Let's say, same distances to your ears either way. In
>this case, you can mentally 'steel' yourself and the impact is far far
>less. We are able to "prepare" ourselves, and this preparation no
>doubt in my mind involves physical changes that our brain initiates in
>anticipation which helps to mitigate the event's necessary chain of
>triggers within our bodies... perhaps with the early release of COMT
>and MAO, though I'm not sure about exactly what mechanisms are in
>play. I just know they work.
>
>She's like that, too. If she is the reason or cause, she is much
>better able to handle it. But if the sound is not in her control -- I
>close the door, she doesn't, for example -- then her reaction is
>strong... very strong.
>
>On a more mundane note, we do this all the time with the closing of
>doors. When a door closes behind us, the sounds reach our cochlea and
>almost immediately, at a very low level, signals to the pituitary
>gland to trigger an adrenaline (epinephrine) release. This is
>measurable, by the way. Shortly later, higher functioning levels in
>the brain associate the sudden sound with a door closing and another
>signal arrives, triggering the release of digestive enzymes like COMT
>and MAO. Although there is a measurable pulse and decay, we learn to
>completely ignore the visceral responses over time. Yet they remain,
>while many of us almost completely subsume the event into near
>unconsciousness unless it is a particularly remarkable closing of a
>door.
>
>Now imagine that she does NOT have this follow-on mechanism -- some
>part of it is broken. Every time I say something, it is a series of
>sounds... rata-tata-rata-da-da-da... that reach her ears and perhaps
>trigger epinephrine releases. Every time a phone rings... Every time
>a door closes... every time something sound-wise takes place that has
>a rapid attack (in the attack-decay sense) to it, she gets "hit" with
>adrenaline. But she has no mechanism for COMT/MAO enzyme triggers, so
>the decay is much, much slower to leave. And she is in a heightened
>state of anxiety that doesn't readily leave, so new "impacts" add and
>add.
>
>It's a lot like that, I think.
>
>Jon

I had to look up COMT. Interesting. The cross issue with MAO i could
not quite follow the first time. Maybe i will try again.
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