Let's give it a name

[batman]

Several weeks ago I watched a story on TV that pertain to the medical condition known as 'Tourette's Syndrome'. And while I was listening to what was being talked about, I heard two words that definitely caught my attention.

Now many of us know about, or have heard the suggestion, of keeping a camcorder charged up and handy in order to be able to record what someone might be doing if it appears they are having a seizure. For individuals who might be experiencing seizures while they're asleep, set something up in order to record a video of what the person might be doing while they're asleep. Sleep on top of the covers and have enough light on, and have the camcorder or whatever else is being used, located in a position so the person's entire body can be seen in the video. For ladies and girls, instead of wearing a nightgown to bed, wear some pajama pants or whatever else you prefer to wear, in order for the legs to be seen in the video.

Many of you have also heard about, or know about, what's called a "seizure diary", where you keep track of pretty much everything you, or someone else, has done or is doing, throughout the entire day, by writing down as many details as you can imagine, writing it all down on paper in hopes of trying to notice a repeated pattern of why a person might be experiencing during their seizures.

So what were those two words I heard of while watching that story on TV? Those two words were "Video Diary". Those two words gave me the idea of what we could call the video recordings we are trying to create in order to have a video of someone having a seizure.

What do you think? Does this sound like a good idea as for what we can call our video recordings of someone having a seizure?

[Meetz1064]

is a mouthful, but why not

Personal Seizure Video Diary?

[brain]

There is a thread on this topic:

Webcam / Internet - Automatic vEEG

This should be discussed between the Neurologist or
Epileptologist as how he/she would like for it to be done
and/or recorded / monitored.

I have had several captures; and still under his advisories
with sporadic webcam monitoring as usual which will give
him the advantage of knowing what is going on during the
nocturnal events.

The reason for this emphasis basically is because of one
reason: the establishment of proof that the individual has
epilepsy and there is sufficient recordings, records, etc of
such. Otherwise, if there is none - then the best option
would be to head for a video EEG at the Hospital so one
could be monitored and logged. There is a difference between
"in home" webcam monitoring and the ones done at the
office / hospital or outpatient. While true, they do have
portable video equipment where patients can have them
set up at home if their insurance permits such.

Altogether, it requires much teamwork, patience, and a lot
of strict compliance involved. It's not easy running this on
your own equipment - for consider to the fact, YOU are
volunteering the use of your own equipment, insurance does
not pay for any of these - but the determination to get those
seizures under some sort of control is well worth it.

Many times I have run through the entire sleep and found
nothing, deleted; repetitiously, before one was ever landed.
Although - first time around, I did screw up *blush*, my fault.

But honestly, from my own perspective, I would not become
so "obsessed" into doing this and I do warn that it is time
consuming as well - for you have to know what all you are
doing precisely. Doctors do not like garbage, and they need to
see specifics and not a whole bunch of "yadda, yadda, yadda's".
So it does take time to edit out the excess baggage, having the
clock, time, and remembrance of what one did the day before
or what-not. Wi-Fi is the best route, especially with the battery
back-up with its long-hold up span.


I would probably term this as a "Cam Log", for these will go on your
medical records/charts. And also wish to imply that such while it
takes a lot of work, it is worth it - when you work together with
your Neurologist / Epileptologist.

[batman]

Brain, I'm not talking about anything "fancy-smancy", but just something simple and easy. A picture is worth a thousand words, and maybe even thousands of dollars if something so funny occurs during the recording where it wins 1st place on America's Funniest Home Video.

If a person is lucky enough to actually have any seizures while their activity is being recorded on a camcorder, then it might narrow down the time as to when the person usually experiences their seizure activity. Again, a picture is worth a thousand words. The doctor who watches the video might notice something that could become greatly helpful in making a correct diagnosis.

The overall idea I was trying to share with everyone was because of what I saw and heard on TV a few weeks ago, where whenever someone has problems that pertains to 'Tourette's Syndrome' and it is recorded with camcorders, the words "video diary" is what they called those videos. Just a video recording of what people experience because of some type of disorder.

[Bernard]

video diary? sounds kinky

[brain]

video diary? sounds kinky

LOL!!!!!!

[walksalot]

I had a video EEG done at OSU many years ago and it caught a seizure. I guess you could call that a "Video Diary". That was when they definitively diagnosed complex partial epilepsy for me. I was trying to shake spiders out of a book and being very frightened about it. I didn't remember a thing about it. They gave me a copy of that video and I wish I had never seen it.

[batman]

Uh, excuse me, but I know what a video EEG is. I've been through 3 of them myself. So when I'm referring to a "video diary", I'm not talking about a video eeg.

What I'm talking about is whenever a person has a seizure at home, or at some type of family activity or event. Most people who witness a person having a seizure will usually explain what they saw to a doctor, or explain what they saw to someone else who will then explain it to a doctor. Some people will write down what they saw on paper (i.e., a seizure diary) and then take it with them for their next doctor appointment. Well, instead of trying to write it down and or trying to recall what you saw while explaining it to a doctor, have a handy video recorder charged and ready, so when a person has a seizure, grab the video recorder, aim the lens toward the person who's having the seizure and start recording what the person is doing. Think...outside of the hospital and outside of the doctor's office.

A video that shows someone having a seizure might end up being more helpful than you expect. A doctor may notice something in the video that you never knew would be helpful. Or maybe there could be something on the video that you may have forgotten or overlooked.

[walksalot]

You're exactly right, but it would be difficult to know where to place a camera even in a home, it may or may not be cost-effective to place one or two in every room. And certainly a person couldn't accompany an epileptic 24/7 just to try to catch a seizure on camera. A cell-phone camera would be inconspicuous, for sure, but how would the "cameraman" know when the aura begins and the seizing starts in order to film the entire event? Many epileptics, as you know, have absolutely no warning of the event.

I would give my right arm if my seizures could be recorded instead of my husband trying to explain them to my doctor. In over 40 years, he still does not understand epilepsy. I have researched this cursed condition in every book and publication I can find and even though I understand what is happening to me most of the time, he doesn't. What I am able to tell the doctor gives him his best guess to treat me.