TRENDS - a Topic Discussion

[brain]

This is a Topic of TRENDS and HEALTH.

The whole issue I see is entirely when
you look at it as a health issue as a whole.

I believe all things in moderation.

I really believe some people tend to go
overboard and there is such thing as
to quote an old adage:
"TOO MUCH OF A GOOD THING"

So I can understand why some people would
be confused, bewildered, perplexed and
baffled.

Then you have to look at this from another
perspective:

I am going to play the DEVIL'S ADVOCATE
NOW ... and it's only going to be one word:

T R E N D S


BUT .............

CAN YOU BELIEVE EVERYTHING THAT
YOU READ ONLINE OR IN A BOOK?

The research doesn't elaborate if the studies
were performed on children (who's brains are
being developed) which is entirely different
than those of an adult. It doesn't specify nor
indicate if the research was performed on
adults. Neither does it state anything about
those who may have Parkinson's, Alzheimer's,
Dementia, or some other type of Neurological
Disorder or Diseases. It doesn't even mention
a word about those who sustained Traumatic
Brain Injuries (T.B.I.).

A person with Diabetics can sustain seizures,
so can a person with alcohol undergoing
withdrawl or illegal drug withdrawl or overdose.
A research could have been done on such part.

We just don't know.



I have read many journals and articles and
even some abstracts that have left me going



I had gotten to the point of asking the
question to my monitor:

"BASED ON WHAT????"

I wonder where they came up with such
findings, conclusions, data, et cetera?
I found it to be insulting that such was even
found warranted to be published.

YES it was nicely written; many people
involved, fancy schmancy titles ...

But still .... after reading it all ...

"BASED ON WHAT????"

I am not a Medical Doctor, but if I was a
Professor, and that was a final exam they
were turning in - I would have given them
a "F" and wrote:

"BASED ON WHAT????"

I'm sorry ... they've failed.

They've elaborated with much hoopla galore
right down to the core, even with impressive
diagrams, charts, notes, details, the whole
works - but yet .... they did not say a single
word about what it was based on.



I had the PDF - printed it out, to read, and
reread, in case I overlooked or missed some-
thing on the computer ~ and I'm sorry to say
it ended up in my shredder.

I've read them all from all over the world. I
have some exceptional ones on my file and
I've seen some awful ones that are so bad
because it's beyond pathetic, and maybe
pathetic is putting it too lightly.

For example:

Here's one from my disc
and I hope it works
(from a PDF FILE)

New Findings In Neurosurgery
ABSTRACT
1996

Four patients who underwent neurosurgery to have both memory sections of their brain removed retained no memory after surgical procedure was performed. Morbidity rate is 0%. All patients suffered from aspiration, cognitive failure, respiratory pneumonia, myocardial infarction, and were all deceased within three days after the successful surgery.

I don't remember where I obtained this
from it could have been from PUBMED
or PLoS or LANCET or Blackwell-Synergy.

But I do not believe this was a 'successful'
surgery.

But the reason for my posting here is not
to be OFF TOPIC - but merely to state just
because something was published, means it
has to be so.

This is the Emphasis I am trying to put here
in the best way I can possibility can.

I know Today's Neuroscience is doing ALL
they can (better than it was back then -
thank goodness!) and we are all DESPERATE
for:

A CURE
AN ESCAPE
A GET A RID OF EPILEPSY, ONCE AND FOREVER!

[Bernard]

There's nothing wrong with keeping up with the cutting edge research, but you raise a good point that research has to be duplicated and validated by additional follow up studies. There is a process in place with standards before therapies reach the doctor's office.

[Birdbomb]

No matter how you dress up a study, it can be all fluff and puffery until several OTHER unfettered and unattached studies are done to concur with the results.




No matter how you dress it up, it's still a pig wearing lipstick

[brain]

There's nothing wrong with keeping up with the cutting edge research, but you raise a good point that research has to be duplicated and validated by additional follow up studies. There is a process in place with standards before therapies reach the doctor's office.

NOW this brings the next DISCUSSION:

People are accessing information online
these days; and are not realizing this.

And like the Star, National Enquirer, and
other Soapy-Gossip type junk - they
believe everything they read because
they're not "educated" and "lacking
knowledge and understanding". So
when they come across these things,
they believe "this is the answer", "this
is it", etc.

So in a lot of ways - while WE KNOW,
they do not. It can be more harmful or
damaging giving people the "FALSE
SENSE OF SECURITY or HOPE" when it
is not so.

They do not understand that just because
a case based on 3-4 people was successful
and it merited a publication a case does not
truly make; but yet merely means a case
for someone to look into (In the medical
field of neuroscience & science) further in
depth if they elected to choose to.

A solid case would be where they have
<n=390 women> and <n=270 men> and
the results were astounding, and that a
case was made; and typically that would
be announced and published everywhere
in AMA to Neurology and not just in an
abstract, journal, articles, etc. And it even
would go so far as to going to Public
Announcement in due time.

[RobinN]

So does this mean (in your opinion), that this information should not be brought up?
Also curious why HOPE is a bad thing?

[Bernard]

I think its fine as long as proper perspective is maintained. When you are the person struggling with seizures, life can be a bit desperate and it can be easy to lose that perspective when it appears you have found a magic bullet.

[Birdbomb]

Hope in itself is not a bad thing but FALSE hope is dangerous.

Example : Some individuals have acheived complete/some success with treatment XXX

How many people is "some"? And compared to other treatments.

Define complete success

Define some success



This type of false hope is an effective marketing tool. It confuses people with the truth. Yes, there is truth in that statement, but it very misleading.

[Zoe]

Birdy,
I love your pictures!!

[Zoe]

[B]

So in a lot of ways - while WE KNOW,
they do not. It can be more harmful or
damaging giving people the "FALSE
SENSE OF SECURITY or HOPE" when it
is not so.

Brain,
Speaking of hope, what are people's chances of gaining control if the focus was on finding and addressing the cause[s] of seizures rather than going with the current TREND of trying to cure epilepsy which is not a disease?

[brain]

I think its fine as long as proper perspective is maintained. When you are the person struggling with seizures, life can be a bit desperate and it can be easy to lose that perspective when it appears you have found a magic bullet.

BINGO!

Well stated Bernard!
DESPERATION is where and what
people loose their momentum and
focus.

It is harder upon the shoulders
when it's your loved one; whether
a spouse or a child or a relative.

We have our hearts upon them to
be "normal"; having seen them suffer
so much. It can be heartbreaking
and the toll and stress can be
overwhelming for many individuals.

Then there are the people who have
epilepsy where desperation has kicked
in where they will grab everything in
sight without even thinking thoroughly
having been told it will give them hope
and which leads right into Birdy's post:

Hope in itself is not a bad thing but FALSE hope is dangerous.

Example : Some individuals have acheived complete/some success with treatment XXX

How many people is "some"? And compared to other treatments.

Define complete success

Define some success

This type of false hope is an effective marketing tool. It confuses people with the truth. Yes, there is truth in that statement, but it very misleading.

So Wisdom and Patience and
Knowledge all must come into
role - no matter how DESPERATE
the person is; Whether it be the
Caretaker or the person with
epilepsy.

We cannot allow "Carelessness" to
fall in place.

For those who have wandered in
the forum boards here and there;
how many of you have heard the
repetitive stories of "I wished I had
not done ..." ? They put the cart
before the horse.

They will tell you that they read up
on this, read up on that; and were
told about this, were assured about
that.

But even I could tell you tons of
things myself and it could be all
100% deceptive; for example:
People are still falling for the lottery
scams from overseas that they won
or about some unknown rich "Uncle"
from Nigeria for millions; and it's still
being circulated and people are still
falling for it ---- DESPERATION.

ACTING BEFORE THEY THINK!

1) People need to learn to ask
QUESTIONS ....
A LOT OF QUESTIONS.

2) If it's too good to be true, be
suspicious. Check with the major
places such as Epilepsy Foundation,
Epilepsy.com, Neurology Today, etc.
If they're not talking about it - the
chances are ~ it's not valid.

3) If you participate RESEARCH
Projects or Programs. Ask TONS
of Questions. Don't feel like you
have been 'cornered' into something
if you feel uncomfortable with.
(I have participated in some research
projects in the past: one in dental
and the other in long term study only)

4) If you decide to "step outside of the
box" and enter into non-invasive type
of treatment. Such as homopathy,
natural means, acupuncture, et cetera.
Please consult with your Doctors first.
Do not take this upon your own hands,
they will work with you, and monitor you.

5) Be weary of people who self-promote
their own selves (not being Medical Doctors)
and pushing how they became seizure-free
by doing this or that from things that are
unfounded and undocumented. Such
practice is not only dangerous, but is a
sure sign of an individual moving out of
desperation. If you've reached to this level,
you need to talk with your Doctor; any of
your Doctors - your neurologist, epileptologist, Primary.

[brain]

Brain,
Speaking of hope, what are people's chances of gaining control if the focus was on finding and addressing the cause[s] of seizures rather than going with the current TREND of trying to cure epilepsy which is not a disease?

ZOE:

Excellent question. The point here;
as Bernard was stating, the move of
desperation. More and more people
are moving to the internet to find
answers ...

And here's the scary part - not all the
answers are the "right answers".

Hence, Birdy's response, the "false
hope".


The CURRENT GOAL IS:
"NO MORE SEIZURES"

Neuroscientists and Neurosurgeons and
the Neuropharmacology and so forth in
that Medical Field are trying so hard to
gear up towards to cracking down on:

Reducing the damages that are being
caused by anti-epileptic drugs (anti-epileptic drugs)
and the side-effects.

Trying to look for non-invasive ways to
perform surgical means - like Gamma-
Knife, for example, to cut down the
seizures or kill it altogether without
damaging the delicate brain.

Attempts to restore the psychological
and cognitive functioning of those who
are in the more severe range.

For the brain and its functioning is poorly
understood, while they've gained some
knowledge and understanding, they have
much, much more to go. They cannot even
reverse something that has been "undone".

=============================

The point here is people are beginning
to read these Abstracts, Journals,
Publications, etc - Online and via Books.
Many of such which are oftentimes
"out of date". And sometimes they do
not understand what is there nor can
they comprehend the medical terminology
of its meaning or grasp its understanding
as it's way out of their layman's terms.
So in sense, they take it all out of
context and believing it to be in application
when it is far from being so. Many of such
are merely research publications (while
some of us may know this, but they do
not) and take it all the wrong way, and
then get all upset because their Doctor
says "NO" or laughs at them; and they
go from one neurologist/epileptologist to another. You
can see this on the forums all over, if
you look closely.

They believe there is a CURE - but it's
being "HIDDEN".

If there was a cure - there would be a
long waiting list at all the hospitals and
all the Neurologists/Epileptologists &
Neurosurgeons would be ultimately busy!
It would be on the MEDIA - It would be
announced WORLD WIDE! Not a single
person would delay to get in line!

I BELIEVE THERE WILL BE A CURE, AND
IT'S COMING ... With the rate of speed
(thanks to the advanced computers and
programming) of progress; I believe we
will be there faster than we know it.

The Primary Aim and Goal is:

To get people to realize they have to
focus on what is HAPPENING NOW and
not LOOKING AT THE PAST. That is
where all the problems and troubles
begins in the first place!

As Bernard said it and I will say it again,
DESPERATION.

Hence the reason why I had posted below
more defined and detailed. We can't let
desperation kick in - but we can have the
HOPE ALWAYS IN US.

IF we EVER let DESPERATION kick in us,
we lost control of ourselves! It's true!

[Zoe]

"The important thing is to not
stop questioning."
Albert Einstein

[brain]

"The important thing is to not
stop questioning."
Albert Einstein

Great Quote Zoe! Now to get the message
out to many, many of the 'desperate' folks
out there will be a challenge!

Never give up Hope, can the desperation,
and always ask questions and look to the
future!

[brain]

DEFINING THE EMPHASIS OF
RESEARCH PROJECTS / PROGRAMS

One of the issues here; which is "of
possible hope" ... is cooperation with
the Neuroscience and Neuroscientists
through participation through research.

1) It could be via Neuropharmacology

2) It could be via Neurosurgery

3) It could be via Neurocomputerization
programming

4) It could be via some other forms of
Neurological relation.

Before it is even performed on humans
it is first studied up extensively through
laboratories; sometimes through mice,
rats, computers, et cetera. And they
go through phases - long before it even
ever reach to human beings.

Many times; they often get scrapped
and another idea or project is worked on.

Once they come up with something and
its working and looking good.

Then the need for Human Volunteers
to participate in the studies.

1) It's normal to feel nervous
2) You're dealing with something virtually
unknown and untried
3) Ask a lot of questions

A good Research Site are always well
controlled and well staffed at all times.
They are always understanding if you
want to back off. But most of the time
it is because people get "frightened".

But realize this:

It is through these Human Volunteers
and through them that the studies
come out and the overall answers,
responses, results, et cetera - comes
the Final Report that has to go before
the FDA for approval ~ that is if they
can prove that this project / program
is/was successful.

And if it is proven to be of such success
and the results were astonishing; and
they (FDA) looks at all the reports of
all the participating Hospitals/Universities
and compare them all - it then becomes
approved ...

ALL because of those who participated
in the RESEARCH STUDIES.

AND THE GLIMMER OF HOPE GROWS
BRIGHTER.