WP Weblog

Sure you do! Well, gotta go, my goal today is to get to work have an
awesome day and get home without calling to say I'm lost LOL.
Karen

You are both welcome.
But I don't think I deserve all the
praise you guys are heaping on me.
:)
Glad you're settled now, Karen.
Time to start learning the roads around here.
Ray

Your very welcome Mikey.......5 years????......awww come on Mikeys
moving service is an awesome way to spend the new year!!!!
wind

Check out the photo section if you would like to see some of my photos
from my move from Michigan to Colorado :)
Karen

Vicki,
Being that I'm new here, if you don't mind me asking, why are you
going off your meds? Denise

Welcome to Angels Mikey! There are alot of awesome people here, I
hope you like the club the way I do :)
Karen

6 more days

Hi Denise
Your not alone , we are all in the same boat, and everybody here will
encourage you along the way, I know it was hard for me when the kids
were in there teens and I was digonsed
with N and C . I can"t imagine haveing it and three little kids to take
care of. I hope you have some help , sleeping , nodding off, and your
chrildren playing ,
Too tuff for me. But you are proubly used to it , but still it isn't
easy. Welcome to the group
e-mail more ofton and use us a sounding board.this is were you can get
the answere's .
to questions you have. bye Norma

Vicki,
How are you doing?
How many days left you got to go off meds?
purrs,
Kat

I had an awesome Christmas and New Years this year. Here is a photo of
to guys who helped me out tremendously...,I had alot of problems
getting out here and if it weren't for there help and encouragement I
would most likely be sitting in Michigan, feeling like a failure. I
got my dream, and things out here are already better.....Not sure how
Long Ray will leave the picture up so I better talk fast, On the left
is an awesome online friend, named Mikey....he is a California guy,
married with a grandchild on the way and he dropped everything because
I never drove a car towing a trailer...and at one time I was willing
to leave everything behind and just pack clothes and go. His Wife is
an awesome lady, not every woman you meet online would lend their
husband out to help a person clear across the country.
Mikey lives in California so snow is something you only see from a
distance, he wanted to see snow so bad when I picked him up at the
airport, but no snow anywhere.....the very next day it started sort of
slushy raining and snowing at the same time, he was extatic....had to
go out in it and make a snow ball.....I got a photo but then the goofy
guy hit me with it LOL....Mikey packed and unpacked and packed, and
straightened and repacked that trailer endless times ti get as much as
possible to fit...I had to dump alot but he was awesome the way he was
able to save the most precious things for me.....Mikey drove on black
ice, slush, blizard conditions from time to time, very little sleep
and napping in the car and taking turns back and forth....he wanted
snow so God didn't let him down, LOL.....see? Who ever said God
doesn't have a sense of humor?
On the right of me in the photo everyone already knows as our
co-founder Ray.....he was so awesome to me and to Mike.....he put up
with my panick attacks, delays, middle of the night calls, he met us
in the wee hours of the morning on a work day to show us the way to my
new apartment. In this photo he took us out to dinner the night
before Mikey had to go home, and he made alot of calls helping us find
Mikey a car rental to get home before New Years Eve.
These two men are aresome and I just want them both to know they are
very special friends, thankyou both.
Karen

Have a Fantastic Day Everyone!! I hope everyone has a safe an awesome
day today this first one of 2003!!!
I'm having a super Holliday in The Mountains!
Karen

Hi, I just wanted to make a quick intro since I just found this group. My
name is Denise and I was diagnosed with Narcolepsy with severe EDS back in
1998. I've been on all the meds so far and they all stop working with me
after a couple months. I found out I was pregnant in August 2000 so I had to
stop taking my medicine when I found out since it could've caused cleft lip.
I'm nursing my baby now so I still can't take my medicine until I'm done
nursing her. So, needless to say for the last year, I've been a complete
zomby!!! I was on Provigil 2X a day, being 400 MG a day. I had a really
tough time at first not being on it, but I've adjusted a little better now
knowing I can't take it.
I've been married for almost 6 years and I have 3 kids. 9, 4 & almost 4
months. So I have my hands full there alone. I hope to meet some people with
the same thing I have. Denise

Speaking of the conference, will there be any tennis players there?
vickithesleepytennisplayer

I'm finally home now.
I'm so gratefull for Ray and Mike's (a friend in California lent me
her husband to drive the uhaul out for me)help. Without them I
wouldn't be here right now.
Had alot of trouble getting out of Michigan, picked up Mike at the
airport and then went to uhaul, they had the trailer but never got the
hitch for me...ooops. So we started running around and I for the heck
of it stopped where I always took my truck in when things went wrong
on it. They had a hitch and started working on it. I had hopes of
leaving that night and they sure tried to get it done....then they
called to say it was ready and we called a cab...while waiting 40 or
so minutes for the cab uhaul closed and the guy at the car place was
about to leave us a note and go home for supper...we we were stuck for
the night.
But we got the uhaul and started packing....and packing......then the
bed didn't fit.....tearing everything apart and repacking.....and
packing...and dumping....took a long time to get that bed to fit, I
ended up tossing the headboard (under alot of complaints from Mike)
because he was ready to pull everything out again and I said no
way....but the hardest part was when Mike yelled the trailer is full
and I still had a living room floor full of stuff yet. He caught me
sitting in the middle of the floor not knowing what to do.....he tol
me he would get it to fit and was about to go back down and unpack
everything again, I had to almost force him to sit down and just hold
still a minute....,then I got out the garbage bags and started dumping
a whole lot of stuff....3 garbage bags later he said he could get it
to fit now without tearing the trailer apart....and before we were
packed I had to dump more i wasn't planning on, but they are just
things that can be replaced, I wasn't going to let things stop me.
We drove on ice most the way through Michigan, I think he said 21
hours to go 600 miles....stayed at my moms in Wisconsin for a couple
hours and saw my son and his girlfriend too....Mike was disappointed
when we tried to visit a friend in Illinois, we waited 2 hours and
drove a long way out of the way to see her.
The rest of the way was good but changing drivers back and forth and
short rest stops and naps while the other one was driving....didn't
see any of Nebraska or Colorado because we drove the entire way in the
dark.....met Ray in the wee hours of the morning...it was nice seeing
him again....me and Mike crashed on the floor when we got here and
slept for an hour....i woke up and it was daylight....had to see the
mountains.....they are so beautiful.....its awesome being out here,
finally home.
Karen

Just wanted to say hi to the group as a new member. I have suffered
from Narcolepsy for 12years now and have experienced many ups and
downs with it. I have attended one conference and hope to attend
more. Hope to meet some people and make some new friends as well.

Me too. I agree with you kat. Sue helped me too.
grumpygrouchyoffmeds vic

Great news! Karen, you and I have a lot to catch up on! LOL

Sue,
Just wanted to say how much I enjoy your input to the group. I doubt
that many really know what you have done for Narcolepsy. I was
diagnosed 25 years ago, and found out about ANA shortly after, so I do
know. Also Bob Seely connected us, and we've spoken on the phone over
the years. I am grateful for all your hard work over the years.
purrs,
Kat

Hello and wishing you all a great New Year. I really learned a lot
here this past year, even though I didn't post much.
Also wanted you to know our group (UPWD.net) is still looking for
videos that strictly deal with disability subjects and situations
that we can show from our site. Plus, we are now showing programs
24/7 from our site. We currently have 29 programs. This is a free
service. Some of the programs are...
Jeff Charlesbois: "Sit Down Comic"
Cheryl Marie Wade: Poetry reading.
Freedom's Wings: Learn about an organization that offers people with
disabilities a free ride in a glider.
In A Little Boat: Exciting footage about how easy sailing is for
people with disabilities. See someone with severe Cerebral Palsy
easily sail alone. Includes description on how the boat was designed.
Sailing Is For Everyone: A ventilator dependent quadriplegic sails
alone. Sailing in different countries. Hands-on projects.
Pacer: A parent training and information center for families of
children and youths with all disabilities.
Most Accessible City: Venice, Florida receives an award from the
National Organization of Disability for being the most accessible
city in the US.
Northeast Passage: Action shots of people with disabilities
participating in sports and recreation.
Achilles Track Club: Running after a heart transplant.
Achilles Track Club: How important is exercise after Traumatic Brain
Injury?
Tim Baley: This is a remarkable story. Tim is a concert pianist who
was born with Cerebral Palsy and slight mental retardation. Tim
performs for, and does, a duet with Liberace.
Plus more. Please stop by and watch some of our programs. Or,
perhaps you have a program that we can show. It can be self shot
Just go to... http://upwd.net and click on UPWD TELEVISION.
Sincerely,
Diane

Karen's back to work now; phone should be working by tomorrow, then
she can get online; Mike left yesterday to head back home; Karen's
only gotten lost twice...lol.
That's it for now. If there are any changes, I'll let you know.
Ray

Is this an HH? Here we go again, off-topic stuff.
vicki, no meds, grumpy, sleepy, andonandonandon

She's almost totally unpacked, as unbelievable as that sounds;
computer's hooked up, but phone service can't be installed until
Monday. Then you'll be hearing from her, I'm sure.
Ray

You're full of prunes.
vicki

Any news on how Karen is doing, Ray?

Has anyone had a California Amen ADHD Clinic SPECT test for $2000?
http://www.amenclinic.com/ac/about/default.asp
Initial intake: $2000 For concentration and rest brain SPECT imaging
In your view, what did the $2000 SPECT test show? Did it help you
bottomline to find the right ADHD medicine/treatment or do you perhaps
view it today differently, that is, the $2000 test did not lead to
the bottomline results you had ideally wanted?
What has been your experience with the Amen ADHD Clinic SPECT test?
Good? Neutral? Other?

I found this in another group, enjoy!
http://holidays.blastcomm.com/
*Hugs*
Brig

That's great news! Thanks so much for letting us know Ray, and
Karen, make sure that bed is a close second to your computer!!! LOL

No confusion here Sue was just interested on how the system works for you
all there in the USA. Thanks
Jane
http://members.tripod.co.uk/JaneandPeter/welcomepage.html

Well, after some delays in departure, Karen is on her way to
Colorado. She made stops in Wisconsin and Iowa to visit family and
friends but is expected to arrive in CO sometime tonight. Weather
looks clear all the way in, so maybe she'll be spending her first
night in CO tonight; tomorrow for sure. I'm sure she'll post an
update soon because knowing her, she'll connect her computer before
she sets up her bed...lol.

thanks sue

Vicki is sleepy. :) :)
Sue

I hope you have a safe trip too Karen...Ray, can you let us all know
when she gets there?
Brig

Dear Andy:
During the next four years, I'll probably say the same, but I'm going to
hang in there, write letters when needed, testify when needed and do whatever
I can to make our narcoleptic life better.
Sue Carella

Drive carefully and have a safe trip; see you when you get here and
I'll show you where your place is located. Tell Mike thanks for all
his help.
Ray

who cares
vicki

Sometimes seems like the waiting is the worst thing Sis! I know it
is for me....LOL Where are you working for your last few days in
Michigan?

I can love my country, without liking the government.
-Andy

Down to 4 days now. It was weird last night in the Port Huron KMart,
got a little teary eyed saying good bye to everyone it was sort of
odd, noone saw at least, sort of hit me as I got out in the parking
lot more than inside...never expected to miss anyone.
I think I'm ready now just waiting..... :)
Karen

6 more days for my last day of work in Michigan...then its off to my
new home for Christmas...Colorado. And my extended family all close
around me....the mountains. I grew up in the rolling hills of
Wisconsin, moved to the flat lands in Michigan to start a new life a
couple years ago, but it doesn't feel like more than a stopping off
place, on my way to somewhere. It sounds funny but its like Michigan
got me used to the city and all the crazy stuff like goofy roads up in
the air, traffic jams, tall buildings, the vastness of the land
stretching out all around me.....bridges, learning how to watch road
signs and read maps....and Wisconsin's rolling hills, bluffs, awesome
veiws, lazy country life, valley's.....all together combined.....the
best of all I know is right in Colorado...and I'm finally going home.
Karen
(PS....LOL.....I have a horrible memory...and they accepted me at the
apartment and I wrote it down of course, but when I started giving the
address out to people I remembered the address and was just rattling
it off...it was cool, but odd....I still hesitate when giving out my
current michigan addy to people...I know the address but its like a
brain freeze or something....I sort of studder over it making sure its
right or something...LOL)

In a message dated 07/05/2001 10:32:39 PM Pacific Daylight Time,
awebster@... writes:
<< All this talk about Government paying for everything is worrying me.
Dear Andy and Others:
I hope that I did not confuse anyone. The government only pays for
medications which are used by durable medical equipment, i.e., medication
which goes in a machine such as oxygen (which is considered a medication), or
albuterol in a pulmonaide (for asthma or cystic fibrosis), etc.
One must be on Medicare and disabled by an illness, and have to use
durable equipment (which is ordered by a physician and rented from a company)
in order to survive. Now if one rents equipment but cannot pay for the
medication that goes in it, that's kinda stupid so that is why the government
covers these limited medications in those few instances.
In 1982, I flew to Washington, D.C. and testified before the commission
so that the Orphan Drug Legislation would be passed. Without this
legislation, there would have been very few drugs approved for rare diseases,
certainly not Provigil or Xyrem. While these drugs do not work for some
individuals afflicted with narcolepsy, they are like a wonder drug for
others. As the cost goes down as more individuals with narcolepsy are
diagnosed, thousands of narcoleptics will benefit. Without the Orphan
Legislation, the tax incentives would not have been available for drug
companies to pursue their distribution within the United States and these
drugs would not be available in the U.S. today.
While I agree with Andy in some instances ("the government screws up"),
my father used to say, "If you don't like it, either get out or hang in
there and change it."
Sue Carella

WOW!!

Hey thanks a lot!! I called that number and after talking just a brief time they said I met the requirements for the assistance program. They are forwarding me on to the next step which is setting up the shipment with the company that does it. Until I get that, they gave me a number for my Dr. to call to get me some samples!!

Again thanks... Maybe in a week or two I can wake up!

Chris

Hellooooooooooo, There everyone!!!! Thanks Brig! And a big Hello and
WELCOME from me too!!! Angel, pops in from time to time, and Raymond
is vacationing in a warm Sunny state....I don't think he posted about
it because he might have been afraid everyone might toss things at him
since he gets to soak up the sunshine and we are up here freezing, or
playing in the snow LOL.....possibly both, LOL.
I hope everyone has their Christmas shopping done! Well, no I haven't
started.....but errrr, ummm, I have an excuse...LOL....I'm moving in 9
days, my last day of work is in 7 days....its starting to come so fast
now.....and I just got my new address the other day, so feel free to
email me or send a message and I'll give it to you. I'm finally going
to settle down....I'm on my last great adventure! I'll be next to the
mountains to live and close to the desert, and the ocean to
visit....soon as I spend a couple years getting myself motivated into
going OVER the mountains LOL.
Have a fantastic day and let us know what your doing for Christmas
this year! I'm mountain watching! :)
Karen

This is directly off of Cephalon Inc.'s Provigil website.
http://www.provigil.com/patient/reimburse/reimbursement.asp
Reimbursement Assistance For Patients
Assistance
The following Guide to Reimbursement may answer any questions you may
have about being reimbursed for treatment with PROVIGIL.
Reimbursement Hotline And Prior Authorization Assistance Service
Physicians and patients who need reimbursement assistance for PROVIGIL
should call this number: 1-800-675-8415
A service provided by Cephalon, Inc.
For reimbursement and prior authorization assistance for PROVIGIL®
Call 1-800-675-8415
Monday-Friday
9:00 am to 8:00 pm ET
Patients and physicians can have their questions about reimbursement
answered by calling this toll-free number: 1-800-675-8415
When you contact the hotline, our reimbursement specialists can help you
with many types of reimbursement issues:
Assistance with verifying prescription coverage for PROVIGIL under private
insurance, Medicaid, and Medicare managed care (Medicare + Choice) plans
Coverage options for PROVIGIL
Help in completing claims forms
Help in appealing denied claims for PROVIGIL
PRIOR AUTHORIZATION SERVICE
By calling the hotline at 1-800-675-8415, we will handle the prior
authorization process for you.
No more waiting on hold with insurers
No more filling out the forms
No more hassles
Cephalon has established this service to eliminate the time, labor, and
frustration associated with submitting prior authorization requests.
By providing some basic information when you speak with a hotline
representative, and signing the insurers form at the end of the process, we
will complete all of the necessary work to request prior authorization for
PROVIGIL.
We will inform you each step of the way.
PROVIGIL REIMBURSEMENT HOTLINE
1-800-675-8415
Claims assistance
Insurance verifications
Appeals assistance
Prior authorization service
PROVIGIL Assistance Program
The PROVIGIL Assistance Program is sponsored in full by Cephalon, Inc., and
is solely administered by the National Organization for Rare Disorders
(NORD), a not-for-profit organization dedicated to the identification,
treatment and cure of rare "orphan diseases."
For more information, please call: 800-675-8415

A big welcome to those members who have recently joined this group!
Post a little about yourselves if you want to, so that we can get to
know you better.
I'll start by saying something about me - I'm Brigitte, another
friendly member from England. I'm 35, I don't have a spinal cord
injury myself but I know a few people who do, so I joined because of
that.
So, on behalf of the founders/moderators who are all busy, I say to
you - enjoy the group!
Brig

I love your snow scene, its beautiful....it finally snowed here in
Michigan most of the day yesterday on my day off....took the car out
in the snow after we got 2 inches to the store and to see how it
handles, I've never had a front wheel drive I don't think....I'm so
used to driving a pickup truck....the pickup had tons of clearence,
I'll just be careful and get going alot earlier, my appointment book
at work is full so I want to make sure I get going in plenty of time.
Anyone have plans for Thanksgiving? I wasn't planning on doing
anything but I got invited to Canada, so I'll have to see what happens
with the weather. There are alot of things I'm thankful for this
year, mostly thankful for all my friends, even the ones I haven't met,
they are awesome, they make me smile even when my confidence falters :)
I hope everyone has a safe and very happy holliday.
Karen

In Australia, the government only subsidises a person medication if they are
on welfare system (Pension, low income payments etc), others have to pay
full price for there medications. If we pay into a health fund that is where
we can claim for the reimbursements.........Mind you we don't get the full
amount back. We only get about a 1/3 of it back, which in my eyes is better
than none at all. We also have the general health care system that everyone
has no matter what. You don't get rebates from them at all for medications
its only if you pay privately....which is the way we do it so in one way we
pay to get the rebate but for families such as ours where we have a few
medical problems its worth it.......sorry for asking these its just
interesting in seeing the way other countries work it. I can see what you
mean in the price control of it but I guess for some its better that they do
get some sort of subsidy than none at all. We do not get any for free at all
we pay for ours no matter how much it is......the only time we get a free
prescription is when the drug is new and as you say the company gives a few
to the Doctors to give to patients.
Jane

All this talk about Government paying for everything is worrying me.
Here's why,
1. Eventually the government will put price controls on drugs they are
paying for. The drug companies will not be able to recoup the money spent
on drug research and development. The most expensive part of any
Pharmaceutical company's budget.
2. If the companies see no benefit from researching new drugs, then they
will have to invest their money in other things which promise a better
return. Do you think there would be any XYREM trials being done right now if
Orphan couldn't make a profit on it when it gets approved?
3. In England and Canada, the Government run health care has run into a
problem. More patients than doctors/hospitals. There are two options in
this case, either increase supply (more doctors) or decrease demand (less
patients). The government can't afford to build more hospitals or hire more
doctors, So they chose the latter. You won't find anyone over 60 years old
getting a Kidney operation or a Bypass operation anymore. The government
has cut the demand by restricting who can and can't get these surgeries.
4. Imagine if the government says to a drug company, Since we are paying
for these drugs, we want to buy them at 50 cents per pill. The drug company
knows that they can sell these drugs to people who don't subscribe to the
Government plan for 2.50 per pill. Where do you think the drug company's
shipments are going to go? I would imagine a rather long backorder for that
drug through the Government Run pharmacy. Furthermore, would the government
try to decrease demand by rewriting prescription protocol for doctors?
conversely, would the government push through another company's comparable
drug before proper testing in order to increase the supply of a certain type
of drug?
5. The government screws up pretty much anything it tries to do. 1.
Welfare 2. Income Tax 3. Drug War 4. Affirmative action. 5. Immigration
6. EPA etc...
-Andy

Dear Jane:
The government pays for limited medication in this country - usually
those medications used by durable medical equipment (oxygen, inhalants in
pulmonary diseases, etc.). However, some drug companies have programs in
place for individuals of low income. The individual's doctor fills out forms
and the drug company sends medication to the physician to distribute free of
charge to the patient. I don't believe some drug companies will accept
people who have insurance, however, and I'm not sure which companies will and
which won't. We are quite different here in the USA - and things aren't
looking up!
Sue

Sue in the USA are you able to claim any of the money you pay out on
medications back from your health fund if you are on one
Here in Australia I guess we are lucky that if the medication is not funded
by the government we are able to get a refund by our health funds...
Jane

Diane, I don't, but hopefully someone in the group has some ideas
they can share with you.
Ray

Hi Norma:
I know that some of the medications are way out of the price range for
many people. I have always maintained that a drug is an Orphan Drug as long
as it doesn't reach the lips of the population it is designed to help. But
we also have to look at if from the pharmaceutical company's point of view.
It takes millions of dollars to develop a medication, put it through the
numerous trials required by the FDA, then set up the equipment to manufacture
and package it, and finally distribute it. They have to make that monitory
outlay back somehow. And, that's by charging the consumer. Fortunately, as
a drug becomes known and used and more is made, it becomes cheaper. Look at
Dexedrine or some of your blood pressure medications or prednisone. The one
way we can perhaps reduce the cost of the medications which are helpful is to
get more people diagnosed and using them. Considering only about a third of
us are diagnosed, we've got a lot of work to do - and there are a lot of
sleepy people driving around and working who need help and don't even realize
it.
You might try contacting the company and seeing if they have a program
that helps individuals who are unable to pay for medication. I haven't asked
that question lately.
Sue Carella

Hi Sue
This is Norma, The only thing I worry about the new meds comming out ,
Is that they are so expensive , I know some that I was able to try to
see if they worked was Provactal, I know thats the wrong spelling , but
anywas , also Cylert and Vivactal were in the 200.00 range
Provactal was 350.0 a month. I couldn't even afford it. My doctor gave
me one month of samples and boy did that work , But that was the end of
that month feeling good/
I just wish they would lower prices , so we can afford them.

Hello to all. Just a quick note to see if anyone here has any ideas
of where I could get videos dealing with disability subjects or
situations that we could run on our web site so others could watch
them. The videos can be self-shot. For example, we are looking for
wheelchair sporting events, artists with disabilities performing any
medium, etc. We are looking for news or events, etc. To get an idea
of what we are doing, please check out some of our programs at...
http://upwd.net and click on UPWD TELEVISION when you get there.
Thanks,
Diane
please e-mail me directly
dianeaustin12@...

Hello Everyone:
Orphan Medical received a letter last night that the FDA found GHB
approvable for patients with narcolepsy, however, the FDA has not given FINAL
approval and that hinges on a number of things which need to be accomplished.
If everything goes well (and it is anticipated that they will), it is
expected that the medication may receive final approval by December. For
further information, got to the press release section at www.orphan.com.
Sue Carella
Trustee, Narcolepsy Network

Hi M&B,
I am a bit skeptical of your post and would like to ask for some
information, if you don't mind. First, is your focus only on the
sexual aspects of SCI or do you intend to explore other areas? Why

Hi - my husband, who has a spinal cord injury, and I are looking for
men between the ages of 18 and 65 with spinal cord injuries to
participate in a research project that will hopefully be published in
book format. We want to address sexuality and SCI in a progressive,
and primarily non-clinical manner and would like personal stories.
Anyone who is interested should e-mail us at
wheelchairtaboos@.... We will then send you our mission
statement and some information about us. We also invite interested
people to join our group at:

Dear Chris:
Each year, Narcolepsy Network, Inc., the organization which represents
patients with narcolepsy in the United States, holds a convention somewhere
in the United States. This year it is in Long Beach, California. It will be
held from Friday evening, October 12th through Sunday, October 14th. There
is usually a Saturday night event (last year in St. Louis it was dinner while
riding on a paddle river boat), and a variety of speakers are flown in form
all over the United States to tell us about the latest research, medications,
and legislation involving narcolepsy. The registration is usually within
anyone's range (although scholarships are available) and rooms usually are
shared from either two to four people. The greatest cost is usually getting
there. And that is why the convention moves each time, to allow those who
cannot travel far to be within reach of the meeting, i.e. (1997 -
Minneapolis, MN; 1998 - St. Petersburg, FL; 1999 - New York;2000 - St. Louis)
I'm not sure of all the speakers this year, but I do know that speaking
will be:
Siegel, Mignot, Hunt, Gulula and individuals from Orphan Medical about GHB
and Cephalon about Privigil.
There is no charge for dinner or breakfasts. Lunch is on your own.
You can obtain further information by phoning or email the national
office at:
email: Narnet; telephone: 513-891-3522. They will be sending a flyer out
sometime this month to all on the mailing list.
Sue Carella
Board of Trustees

me too!!! :):):):):):):)

May I ask what conference that some are talking about? Is it something to do with Narco or not? Just interested.

For your information Rin,

Debate- 1. To consider something; deliberate. 2. To engage in argument by discussing opposing points. 3. To engage in a formal discussion or argument.

I'll let your own words make my point for me.

Nancy simply states "At last ADD/HD is being looked at in a new light."

Now I have debated before and I don't believe your response falls into either 'discussing opposing points' OR 'engaging in a formal discussion or argument'. Rin will now respond with unneeded venom and complete lack of knowledge.

"I DO NOT believe you either, I have done plenty of research on ADD/ADHD

and do possess a form of a medical degree. WHERE IS YOURS!!!!!!!!!!!"

WHAT???? How does this become part of a debate on the ADD/HD being looked at in a new light????

Nancy also states; "My dad and other parents of that
generation and generations before mine laid down the rule: You get a
lickin' at school, you get another one when you get home, no questions
asked.)"

1. Spanking by parents is not illegal

2. Spanking in school is still legal in 23 states in our country. My parents told my sixth grade teacher on my first day of school - "you can paddle him if he gets out of hand." When I heard that, I knew I'd better behave.

And Rin's comment after Nancy's rather benign definition of Ol' School Discipline: "The punishment that you are talking about are CHILD ABUSE, plan and simple."

What is more abusive? spanking your child? or forcing him/her to take mood altering drugs?

Nancy then states;

If anyone has a problem with what I've said, state your case and let the
discussion continue. This list needs some lively debate!

And once again Rin shows the depth of his Genius---

I INDEED DO HAVE A PROBLEM WITH THIS!!!!!
BUT MOST OF THE PROBLEM IS YOU!!!!!!!!!

Now Rin, when someone asks for debate and to state their case, that usually means presenting your argument in a logical manner. YOU DIDNT PRESENT AN ARGUMENT OR STATE YOUR CASE.

I have no problem with Rin's opinion, everyone has a right to express their's. Nancy expressed hers, Rin wanted to express his. Fine, But why does Rin's opinion only include being mean to a person who has helped countless people on this Group?

I don't blame Nancy for leaving this group, Only six months ago it was a place where people could go and have a logical argument without insults. I have disagreed with people whose opinion, while different from mine, was at least backed by their logical reasons for have that opinion. I think no less of someone who doesn't agree with me, in fact I respect them more for defending their position logically. However when an argument degrades into nothing more than the following; (punctuation and highlights left as written by author)

I INDEED DO HAVE A PROBLEM WITH THIS!!!!!
BUT MOST OF THE PROBLEM IS YOU!!!!!!!!! Rin, 6/30/2001

You must NOT have any children or are SO DUMB to see ADD/ADHD in your
child or anyones child that has been properly dx'd.

Rin, 6/30/2001

Medicine is still not a perfect science and never will be, because of the added social, chemical and etc problems that are created new each day by US and the future generations. And, the misinformed and stupid ppl like yourself, who state such nonsense reasons for the behaviors of a children now and future of the children being born every minute.

Rin, 6/30/2001

DUMB DUMB DUMB and also very UNKIND and NON-UNDERSTANDING.
I FEEL SO SORRY FOR ANYONE AROUND YOU.
Rin, 6/30/2001
GOD, PLEASE SAVE OUR CHILDREN FROM PEOPLE LIKE THIS!!!!!

Rin, 6/30/2001

Nancy, thank you for expressing your opinion, I'm sure their are many people who disagree with you. But that is why we have debates and arguments! If everyone agreed with everyone else this would be a boring world. Thanks to those who responded to Nancy's posts with reason and logic; rpmrem, suzzencka,CCollins, Ctw, Sue Carella. While all you that I mentioned my have agreed or disagreed with Nancy's original comments at least you were able to maintain a respect for the opposing side's arguments.

-Andy Webster

P.S. Rin, what is a 'type of medical degree'?

This is cool, we now have 100 members in the club again! I hope it
continues to rise, and not fall like it has been.
Brig

How are you all doing? I'm doing pretty good, getting busy on my
various projects and activities....online alot but working on my
computer, typing up notes....chilling out in the evenings watching TV
with my cat on my lap...still taking care of my parents house while
they are still in sunny Spain at their second home...hope they come
home soon, I'm missing them!
Have a great weekend!
Brig

I am not part of any bet. If I was included in any bet, I have no knowledge
of it. So, if I am a participant in any bet, I want my cut. I hope everyone
can see the humor in this ridiculous rant.
You Chris, can bet on this: I will be at the conference with full tennis
gear in tow. The mention of tennis by certain folks drips of jealousy. To
those, I say, "don't be jealous, join me."
To those who don't play tennis, I'll have my scrabble board, deck of cards,
and an arsenal of funny jokes with me. I'll also have a limo at my disposal
for this trip. My kids have arranged for a limo for me the whole time I'm
there. Yippee, this means I can sleep guilt-free in back. Maybe I'll plug
my bipap into the cigarette lighter for laughs. Funny, it's not really
funny, but I was told to never sleep without it.
So, here, I mentioned apnea, who's going to complain now.
Day One of No Meds and I'm ready to bite everyone's head off, so go ahead,
make my day!!! This is a support group isn't it?
Thank you all for listening.
regards,
vicki,sleepy,but no tennis

Robert,

I agree whole heartedly that we on this list have all been played. From just the last few emails of Nancy I would agree that this seemed like it was just a big bet that she could get the whole group to start fighting with each other. The bad thing is that it worked. Also from one of the emails where Vicki says that she will pay what she owes, she was part of the bet as well.

I Very much agree that we should stop all the flaming and get back to a group that helps each other no matter what the problem. I don't know about others, but I really can use the help of other Narcolepsy people at times.

There are many days that I have been blasted by so called "friends" that think I am just some lazy piece of shit hiding behind some made up disorder. When I come home and sit down in front of this computer, I use to know that I could open up my email and read some good helpful advice from others that know what it means to be a Narco. I know there are others out there that feel the same way as some have spoken up and said as much.

We are a group of people that are suffering from a disorder that is so misunderstood by others. Can we truly afford to fight with each other over another disorder that is misunderstood by so many. How can we teach others about our disorder and how real it is when we are so closed minded as well.

I personally feel that we need to come together and support each other no matter what the are going through. These new people need those that have been around a while ( I know I sure need that). How else are they going to find out that they are as normal as a Narco can be. It is up to us.

Chris

Chris

Hi there Anita, and welcome!!! Glad you could join! Anita and her
Hubby Mikey are cool people......I just found out they are going to be

I need to apoligize, I only told about 5 people about the tunnel, one
thought I was apsolutely insane to drive down into a tunnel under a
river between two countries...and he is 50...LOL....one was happy for
me and the rest had no idea what I was talking about...I didn't even
tell a couple people who have known me so long they would have
instantly known what I was talking about....and they wouldn't be to
shocked either, I think they would expect it because I'm moving, and I
don't want to leave any unfinished business...but at the time it was
so spontanious I just did it before I had time to think it over. I
guess I was in a weird mood last night.
I guess the negative comments always seem to stick in a persons mind
more, when its night time and I'm tired out.
wind

My god. And you don't like other people attacking Nancy who flat-out asked to be attacked. RIN's description of an MSLT sounds right on the mark to me. If anyone's legs have been pulled I think it is ours -- by Nancy. I have a strong feeling that Nancy was jerking us around before she left -- that she knew she was going to get off the list -- her cryptic email about paying up at the conference is enough to make me highly suspicious. Don't forget -- she ASKED for debate and she slandered an entire class of people with a disorder. RIN did not ask for this kind of below-the-belt attack AND VERY, VERY UNETHICAL TAKING EMAILS FROM OTHER LISTS without permission.

RIN, please be assured that Vicki's opinions are not mine. Please stay on this list despite her misguided attempts to defend Nancy. I have come close to quitting this list too in the past few days, but I know I need you folks. I won't let total jerks get in the way of my getting what I need.

Leslie G.

Dear Fellow PWN:
I am forwarding this communication for informational purposes only. Anyone
who has had an MSLT or can read with a minimal amount of understanding knows
better that the description of "her" MSLT is questionable at best.
Methinks our sleepy legs have been pulled.
If the person in question is truly in the medical field, God help us all.
Knowing this, I intend to bring my tennis racquet with me for doctor
appointments just in case the aforementioned person might work at a doctor's
office. I'm known for my big Western. Just kidding, but you all get my
point.
A couple of you know me personally and have met me in person. I do not fib
about important things such as n. The old fakeoroo is an insult to us all.
ok, i'm done, nitey nite.
btw, tomorrow is day 1 no meds in preparation for more testing in two weeks.
hellllllllllllllllllllllp mr. wizard, i don't want to be asleep!!!
regards to you all,
Vicki

I just got home from work and all the ghosts, pumpkins, Spiderman's,
gouls, firemen, are out and so cute tonight....I even got the
oppertunity to photograph Winnie the Pooh, today....she was the
sweetest little thing you ever saw....
Have you ever been really terrified of anything? I mean so scared you
have nightmares if you even think of trying it....I'm 44 years old and
it sounds so stupid now....I'm too old for this kind of thing. I've
never been afraid of anything before...never did anything
uncomfortable, I was never even afraid of dying, just hoped to get it
over with as soon as possible when the time came....but that was in
Wisconsin, that was in my home town where I was safe...everyone knew
me and I knew everyone else.....you had to drive an hour on country
roads (2 lanes of oppisite flowing traffic) in order to ever see an
interstate highway.
Then I moved to Michigan, living in a city, with a bunch of other
cities stuck on it...the main road changes names every few blocks it
seems, traffic merging on both sides of me, almost everywhere you go
is interstate looking driving, stop lights dotted all over the place,
roads that go straight up off the ground and goes over nothing, but
the air...smog warnings, pulution warnings saying its unsafe to drink
the water from the tap, bottled water you have to buy.....buildings so
high you cant even see the top of them and still sit in the car,
people crowded in so close sometimes its hard to breath....but
everyone is friendly...and quick to smile....not any differnet from
the country......panick attacks, hyperventalating, getting lost in the
city, overreacting....and those things made me mad at myself. I'm far
from being a kid.
Last night I did something I thought was so awesome, and it was
totally by accident....I was working south of Detroit, had an odd day
and sort of in an odd mood...I got on the highway and the sign for the
tunnel to Canada went by and I grabbed my purse and dug quick to see
if I still had that $20.00 in Canadian there yet, and I did, I sort of
gravitated twords the turn off lane....got right in the middle of the
city part of Detroit...the tall buildings seemed to make me feel
tiny...I got sort of a hyper, scared, excited, feeling and I sort of
felt dizy and sea sick, so I took a carsick pill...and I got
lost...kept loosing the road in all the twists and turns of the roads
going over and under each other...and the bright lights....stopped and
got directions 2 times.....but I finally found it and I stopped to pay
the toll....I had no clue what got me there, or why I was doing it
even.....I have been living in Michigan a while now, this will be the
third winter here, and until this moment in time I couldn't do it, and
even decided not to do it...I started driving into it and it wasn't
anything like I envisioned it to be...and I got online after I got
home and told everyone almost...
But today I feel sort of foolish about the entire thing...what was I
so afraid of? I made such a big deel out of it. Not one person I
talked to was impressed....they didn't understand the big deel
either...I ended up blowing $17.00 Canadian is about it....I even gave
$10.00 of it to a lady who was crying and gave em directions because
she told me she needed to get a bus back to Winsor....a friend out in
California...told me I blew it really good doing that...she was
probably going out to get drunk with the money...and I felt so good
thinking I was helping her when she was in alot of trouble....like God
might have planned it for me to be there at just that time...boy do I
have an overblown ego.....LOL
Just wanted to talk.......been way to quiet here.....Anyone ever read
these messages?
wind

night time...............full moon..............clear
sky.....................lots of stars....................??????
hummmm, now what.................
never should have listened to that darn dog....I don't get it......
Meeeeeooooooowwwwwwwww
prrrrrrrrrrrrrr

I'm back for a couple days again...LOL...I can't believe how much they
have me on the road now, I never used to be. I'm in hotel rooms more
than home for some reason.....lol...
Thanks for updating everyone for me,Ray, and yes, all the way up there
this last time all I saw was dark, then grey thick fog....everyone was
telling me how beautiful it was up there LOL....I did get to see some
color on the way home, but mostly in the dark then, too....its getting
darker earlier now...I guess winter is coming fast....
If all goes as planned, I will spend the nicest, snowiest, part of the
winter in Colorado, looking at the beautiful mountains as I drive to
work every day....my boss told me all it takes is a phone call for me
to get transfered out there with work, when I'm ready.....well I'm
ready but I need to wait for a little longer....after the christmas
rush, the rush in a portrait studio ends a couple weeks before
Christmas because they want their portraits back before family all
come home for the hollidays...my goal is to be in my new apartment on
christmas eve, even if I'm sxleeping on the floor with nothing
unpacked, maybe I'll be lucky and it will snow and I'll go for a long
walk down the street, looking at all the lights in the houses and
feeling the snow on my face, and knowing the mountains are so close i
can actually touch them anytime I have a little time off...I'm sure
working towards that :).....oh I found out that I will still get my
one week paid vacation in time for my birthday in February! I've
never had a real paid vacation before.....
I hope everyone has good things going on in your lives today....its a
nice day in Michigan right now.
wind

what was the question-------I don't understand or did I miss something
my computor didn't pick up . What about caffeine---My doctor took me off
all caffeine , so explain.
Norma

Nancy,
Yes I am in the field of medicine and also the parent of a child that was
diagnosed at the Mayo
clinic at the age of 5 by a well-known neurologist and
psychiatrist. Which carefully monitors my son
even to this day and he will be 19 in July.
Did you ever stop to think that since you are a teacher by profession as
you stated that it might be your
fault that these children that cant read or write, since you are so
prejudice about
the dx's of ADD/ADHD.
Thanks to Leslie G. , Susan Zencka and Chris for your insight in the matter
of ADD/ADHD.
vicki, the sleepy tennis player, you are the one that is flaming the list
with your words.
Nancy is the one that brought the subject up and ask for the debate wanting
some livening up
of this list. I am also suprised at your reactions, because I thought you
were a very caring person
according to another list that we both belong to.
Again, Please God keep our children away from teachers and prejudice people
like Nancy.
rin

Caffeine, adenosine, and sleep:
http://www.sfn.org/briefings/adenosine.html

Brig, sorry to hear about your accident; don't wait too long to be
checked out. 'Course if it's whiplash, you'll probably have a heck of
a time sleeping tonight.
Ray

I was involved in a car accident today, where someone drove into the
back of my car at a give way (yield) sign. I had a friend with me.
We, and the other driver, another woman, were a bit shaken up, and I
think whiplash injury is starting to set in now for me. I've had a
weak neck anyway, it often seizes up. The car took some damage to
the rear corner, but is still ok to drive. Will have to be without a
car while it gets repaired - need to wait till Monday to get an
estimate on how long it will take. Will see then if I need to see a
doctor too.
At least no-one was badly injured, and since it was the other woman's
fault, her insurance will pay for it. Her car was quite bad too, but
still driveable.
Let's hope tomorrow is a little quieter!
Brig

Hope they give you some days off soon sis, you deserve it!
Enjoy your weekend everyone, and Happy Thanksgiving for Monday for
any of you in Canada!
Brig

Dear Charles:
This group's interest, I think, would be between narcolepsy and ADD/ADHD.
Chris Collins has narcolepsy and family members with ADD/ADHD, you don't.
However, I think we all understand what it is to have varying hourly
responses to medications.
Sue Carella

Sue,
I am really grateful to you and the others who have posted since my original
post sharing that I had heard there might be a connection between ADD and
narcolepsy -- I actually heard it on either this list or the other n list I
subscribe to first, so I was quite surprised at the outrage that greeted my
posting, and I was surprised that anyone considered such a suggestion out of
order on this list. It may be that there is not a connection, but it seems
to me that discussing such a postulation is well within the stated purpose of
this list.
Thanks for sharing about your son!
Blessings+
Susan Zencka
In a message dated 7/1/01 4:45:45 PM Central Daylight Time, WakeUpSue@...
writes:

It might have something to do with
narcolepsy or it might be that hyperactivity is more readily diagnosed than
years ago as well as narcolepsy and so we are seeing the two together. But
they do occur together more often than one would think.

Don't be caught napping at work today....only a few more hours and
then its time to go home!!! You can do it!

A little background - I am an adult with mild ADHD - Inattentive
type - including Central Auditory Processing Disorder (CAPD) - I do
not have narcolepsy myself.
Ever heard of ADHD (Attention Deficit Hyperactivity Disorder)
syndrome? It's gone through a large number of name changes over the
last fifty years. Previous terms have included: ADD, Hyperactivity,
Hyperkinesis, MBDysfunction, and Minimal Brain Damage. There are
several types of ADHD and I have the rarest: it's called ADHD -
Inattentive type predominantly. With me, there is little or no
impulsivity or hyperactivity present which is part of the other types
of ADHD. The symptoms which I experienced were a high level of
involuntary distractibility, a subtle hearing challenge/communication
challenge called CAPD (Central Auditory Processing Disorder), and a
very short attention span (measureable in seconds). ADHD can be
severe, moderate, or mild. Mine is mild. I am one of those persons
who responds extremely well to the right alerting agent which works
quite well for limited periods of time (like about 4 hours or less
and the second dose does not work as well as the first). For me an
FDA approved alerting agent, a special caffeine compound made by
Bristol-Myers (NoDoz, 100 mg caffeine, St. Louis, MO type only) works
better than Ritalin, a factual observation which surprised my doctor,
Anita Uhl Brothers, M.D., of Berkeley, California, who allowed me to
better understand how in some people, an underaroused central nervous
system present from birth can be temporarily boosted and mended with
the right ADHD medicine, most often a central nervous system
stimulant of some kind. One of my favorite movies is "Awakenings"
with Robin Williams, based on a true story and the book by Oliver
Sacks, M.D. In the movie "Awakenings" it shows a very dramatic short
term response to a medicine which allowed people with severe motor
difficulties to move a lot better for short periods of time like
about 30 days or less when tolerance developed to the medicine and
the medicine no longer was effective. I tend to live with that type
of response, the medicine can relieve the ADHD symptoms for a few
hours a day but not for the entire day. In some ways I am very lucky
because there is a small group of those with ADHD where the medicines
only work for about 1 hour. The ADHD medicine for me temporarily
improves my fine motor control, especially on the left side of my
body, apparently by changing the level of neurotransmitters involved
with human movement including the chemical messenger dopamine. The
reticular formation of the brain stem governs the level of attention
and is a factor in some cases of ADHD/Attention Deficit.
Oversimplified a little yet still in the ballpark, the underlying
cause of ADHD is believed to be a spotty neuron. Good nutrition helps
a little so I believe in the idea of a fresh, whole foods, additive-
free approach to daily nutrition; however, bottomline, the only thing
that really helped me was finding the right ADHD medicine which for
me contained the alerting agent, caffeine. I was born in 1946 but it
was only in 1978 when all the puzzle pieces tended to come together
and I could understand what ADHD was and what it really wasn't. The
credit goes to Dr. Brothers, M.D., of Berkeley, California, the first
doctor who had the background needed to provide some of the answers,
remedies, and solutions needed for me to understand and deal with
ADHD a little better. That's my view.
Thank you for reading this. Appreciate it. If you have an interest in
ADHD, please do not hesitate to contact me. Charles Thomas Wild,
Sacramento, California Email: ctw1940@...

Sue I also have done the same with my children we only eat fresh foods not
preservetives in anything in this house. Not even sauce's or jams I make all
my own. It has also worked wonders with my children and has helped Peter in
some instances as well.
Jane

Please remove me from this list...I just don't like the child-like
bickering.
Joyce

Just wondering if anyone is on this and if so how is it working for you ?

While I think there are many related illness that are just now being brought
to light connected to n, I agree that we all need a forum to vent.
I once talked about obstructive sleep apnea in this forum and was TOLD to
stick to the subject of n. The list owner did not tell me this, some of the
members did. I won't mention names, they know who they are. I could,
however, post the emails that I was sent for daring to mention obstructive
sleep apnea.
Sue, I never said I had a college education, nor have I ever pretended to.
How fortunate some are to only have n. If sleep disorders were playing
cards, I'd have a royal flush. I won't bore anyone with the ugly details.
I apologize for offending anyone.
regards,
vickithesleepytennisplayer, soontobesleepier

we needed this.
vic

Me?? A mover and a goer??? Naaa just alot of stores need help and
I'm one of the few who will drop everything and run is all...LOL...no
family or pets or kids tieing me down anymore......sigh....I did get
called and had to work all day and pack and leave to be there the same
night tho, then open for the next day in Saginaw with a new studio
manager who froze everytime he got the camera button in his hands and
a person in front of him....after the first day....one of the
assistant district managers didn't think he had a chance of lasting
long....but I knew the cercumstances.....he had way to many trainers
who did everything for him "showing" him what to do...once things
quieted down a little and we got together one on one he relaxed....we
made him go home and watch cartoons for an assignment...LOL....He is
awesome now....he'll probably end up being district manager someday
LOL....the kids love him....he only needed to relax and not be afraid
of them....
wind

Hello Everyone,
I seldom post, but would like to say that I have narcolesy and my son was
also diagnosed by Feingold as hyperactive when he was 8. Rather than give
him ritalin, I took Feingold's suggestion and removed all artificial
colorings and flavorings from his food. For him, it worked like magic.
Having been involved in the narcoleptic community for many years, I have
paid particular attention to anyone with narcolepsy who says "hyperactive as
a child" or "I have a child who is hyperactive." You would be surprised at
how often this occurs in families. It might have something to do with
narcolepsy or it might be that hyperactivity is more readily diagnosed than
years ago as well as narcolepsy and so we are seeing the two together. But
they do occur together more often than one would think.
Sue Brockway Carella
"Ignorance is our enemy; information, our most powerful weapon.

Hi most of you do not know my husband or myself, we come from Adelaide Australia. I have been sitting here reading the posts on ADD and ADHD. I have no medical background other than working with the intellectual/Developmentally delayed people. I do however have one husband who suffers from Narcolepsy and two children who have ADD/ADHD, OCD and other illnesses. I have on more than one occasion been told by my husbands Neuro and sleep doctor that they are trying to prove that the two (ADD/ADHD and Narcolepsy) are connected somehow. (as I said I am not of medical background just live with these problems on a daily basis) I do not wish to offend any one on saying this so please don't bite my head off for doing so. My daughter and son are two totally different cases in their own right as is my husband (who may I add is not the father of these children only their step father) My daughter is on Ritalin and Endep, my husband is on Dexamphetamine (sp) and Cipramil. My son is on
Zoloft for his depression and the OCD. I will also say that none of my children are so whacked of there face that they walk around like zombies. (sometimes I wish for five minutes that my daughter was so calm and sedated but this is not what I would allow from there medication I don't see the point of there lives being lived like this) My daughter is very intelligent and on the other hand my son is not. He is very behind in his schooling, he is not a naughty boy and often will cry for help in trying to find out why he does the things he does. He will never cope in the outside world totally on his own without being taken for granted. (not for the lack of trying to teach him, by his teacher and his family) My daughter has excelled in her classes and should in her own right be put up a grade but we do not wish for this to happen just yet as she is young and we want her to get what she needs as she needs it. We do however provide her with the extra tuition that she requires. I
fought for three years for some other type of diagnoses for both my children, they even felt that my son may have had asphergers syndrome (sp). What I am saying is I guess not all children/adults get the right diagnoses the first time, I know my hubby didn't. Its sad that all of us cant allow others their own opinion without the ridicule. Who knows who is right I don't that's for sure. All I know is what I have been told by both of my hubbies Neuro and sleep doc'. Who do I believe ?. Please as I said don't ridicule me for my posting, I wish there were more answers for all of you. My husband is in having his third lot of sleep tests tonight and I just wish this was his last but I know again in two weeks he will have another. From there who knows. He is 40 years old and as of January this year he is now retired, may I add not by choice. This has put a tremendous strain on our finances. Not to say what it has done to my husbands confidence and self esteem. It would be nice to
stay on the subject of Narcolepsy I know but there are times that it will go to other topics cant we all just read what we need to and ignore what we don't want to look at for the sake of some peace and harmony in the group. It seems we have forgotten that some of those who suffer from Narcolepsy do suffer other things as well, unless we all speak of these how can one find out if they are common to Narcolepsy. Not all Doctors know everything there is to know about Narcolepsy. So if by asking these questions in the group how is one to know if it truly is a part of narcolepsy. How many of you have been to the Doctor and have been told that what is happening to you is part of the narcolepsy and later found out that it had no relation to it at all.

Sorry will get of my soap box now and if I have offended I am deeply sorry. Just tired of not being sure who to come to for these answers. If you cant come to friends then who can you come to.

Jane Wife of a sufferer of Narcolepsy and Cataplexy also mum of 4 children 2 of which suffer from ADD/ADHD, OCD and one child with Dyspraxia.

Dear Chris:
I am a "lurker." I guess, but hope you will continue to post on the list.
Vicki is often very outspoken (and incidentally doesn't have a college
education), and Nancy can be very outspoken, too. That is why they chose
this list.....so they could speak their minds. BTW, I applaud you for going
back to school. I also graduated at the age of 48, so don't be discouraged.
Sue Brockway Carella
"Ignorance is our enemy; information, our most powerful weapon"

Mornin', Diane,
Hope your days are going well.
Ray

I reread my email that I sent and it would seem that I have done the same thing I was trying to stop. Nancy, I am sorry if I came on a bit strong in the last email. All I am wanting to say is that I would like to open my eamil without having to read fighting.

Vicki, I do not have a college education yet. I am working on it right now at the ripe old age of 37. Yes I do have Narcolepsy Vicki and thank God for the meds that I do take as it seems to help keep me awake finally! I do have respect for others but, I believe that respect is something that is earned and not demaned. I am sorry if I offened you or anyother on this list.

Yes this is America and yes we each have our own opinion here. All I am saying though is that each person should be allowed to say what they think without the fear that someone is going to cut them down as some have in the past. However, seeing that this is not so on this list, I will rerain from posting anymore of my opinions and just look for the help that I do need and want.

Chris

Hi, Walter, my name's Ray, as you could probably tell. Welcome. Be
sure to keep us up on how things are going with your team. For how
long have you played? Got any pictures of you in action that you
could post in the photo section?
I'm not a disabled person, but I got involved in this group when I
got involved with a woman who was. I hope you enjoy your time here.
R

I have posted several times over the last 2-3 months about having what
seemed to be the worse time with my N. symptoms. I felt like what I
felt like 25 years ago before being diagnosed. I was sleeping 12-14-16
hours a day!
Well last week-end it came to light that I had a severe plumbing
problem. I had "smelled" something terrible, but never could find the
source and have only lived in this house 8 months. The plumbing was a
problem when I moved in.
It didnt occur to me that this was the problem with my extreme fatigue.
headaches, GI problems, and sleeping all the time. Even my cats got
sick. We are better now, slowly each day.
I am sharing this so maybe it can be of help to another. We do need to
explore things when our symptoms change.
and to just add a lighter note to the group, in my seach to find out
what the sewer gas would do I ran across this newsclip... I know a few
members have spoken of taking a short nap in the can....... be careful!
Kat
newsclip:
It's a Gas
By Walter Jowers
OCTOBER 20, 1997: Here's proof that my metal-working father, Jabo,
was onto something when he preached, "Never sit down on the job." Last
month, Hong Kong metal worker Leung Sing-fai decided to take a nap in a
company bathroom. There was no light in the little room, which made it
all the better for napping. Problem was, when Leung figured it was about
time to get back to work, he used his cigarette lighter to illuminate
his watch. The bathroom exploded with him in it. Leung lived, and Hong
Kong lawyers are now working feverishly to fix the blame. If I spoke the
lingo, I'd love to hear a tape of the depositions.
I suspect that the company lawyers will accuse Leung of hiding out
in that bathroom and huffing hospital-grade ether. But I suspect that
the guilty explosive is sewer gas--specifically methane--the active
ingredient that lets foolish college boys set their farts on fire.
(Warning: If you must light farts, make sure you're not wearing
polyester, which will burn and stick to you like napalm.) I don't have
any raw data, but I'd guess that the number of sewer-gas casualties
worldwide is fairly low. But they're not unheard of. Just last week, I
read about a man who literally farted himself to death.
As this poor soul slept in a small, poorly ventilated room, he loaded
the atmosphere over his bed with his own nocturnal toxic-fart fumes. The
mighty funk even downed his rescuers and put one of 'em in the hospital.
Investigators blame the man's diet of mostly beans and cabbage.

Hello and welcome
Diane

Oh my my Nancy my friend, were you just trying to show us some early
fireworks??
I would hope that we as a group can keep this a safe place. We've had
to defend ourselves against the world, doctors, employers, and alot of
us even our families! Opinions are fine, just remember that we each
have them....
I personally could state my opinions, but I will only say from what I
have seen many pwn also have other disorders. Many times that is alot
of what we must do to survive, figure out what the problem is coming
from. I happen to have many disorders, and I don't have the energy to
belong to a group for each, especially when research is showing they are
connected.
But can we just be alittle more patient with each other? Many a time I
have seen someone make a post that isnt totally N. and just get slammed.
That has made me back off from sharing info that might help someone
else. I found out about RLS in a narcolepsy newsletter a number of
years ago. My doctor at the time & I had searched high and low for some
kind of answer. As with N it was FINALLY an answer.
I know Nancy you aren't fond of ritalin, but it is the best medicine for
me. It also bothers me how overused it is, but just like with N. some
children do need it. It seems most meds for N. have contriversity, and
I have heard so many stories of too many pwn trying to make it while
being undermedicated. I know some CAN'T function without meds. There
is NO WAY for me, I just would sleep forever.
Happy 4th of July, and can we keep the fireworks in the nite sky?
purrs,
Kat

Nancy, you are hilarious.
I'll be at the conference this year. It's an hour's place ride from home.
Will there be any tennis players at the conference this year? I'd love to
hook up with you and knock the little yellow ball around some.
I'm a humble 3.5/4.0 player but will play tennis with anyone, any level.
I just keep hoping there will be at least one tennis player.
regards,
vicki, the sleepy tennis player

Well, Karen is off and running yet again; this time she had to leave
so quickly she didn't have time to let everyone know. That woman is
a mover and a goer, ain't she?? lol
Ray

Well,

I'm not sure about everyone else round here, but I want to thank you for some of your opinions on ADHD. I have a nephew that has ADHD and for Nancy, I had a Grandfather that had it as well!!

For those of you that are new to the list (as I know I still feel that I am) Nancy does NOT speak for all of us here and her opinions are not those of the group. As she is just another lister as we all are and not the moderator, owner, or spokesperson for us.

I myself have a brain and can figure out things for myself, even when the narcolepsy seems to cloud my mind at times.

I hope that one person does not scare off others from "putting in their orrs" (a line from "The Mikado" of which I preformed in this spring).

Chris (sleepy as my family calls me)

Had to go up to the UP, to Sault Sainte Marie....on the Michigan
side....Trained a guy one day, then turned around and came back the
next day..............LOL...this is the Macanac Bridge....they said it
is the longest suspension bridge, but not sure if anything beat it yet
or not by now....
Just now got a call to go back up to Saginaw....so, no day off for
me.....this time it will be something new tho....going to help set up
a new store with our district manager....was told to wear old clothes

January 2001 issue of Neuropsychology (Monastra et al) "The
Development of a Quantitative Electroencephalographic Scanning
Process for ADHD: Reliability and Validty Studies" pp. 136-144
The best source for recently published (and peer-reviewed) articles
about ADD / ADHD (including alternate therapies) is the Attention
Research Update, published via www.attention.com (compiled by Dr.
David Rabiner)
No, because it *did* exist. From stories about my dad's family I know
he had it. But he was able to run around naked and blow up his
neighbor's dock without too many bad consequences. (Although he had
many more near-death experiences than kids these days usualy do).
This isn't about ADD or ADHD -- it is about the medical system. The
same one which takes us 7 doctors to find our diagnosis of
Narcolepsy. ADD should never be diagnosed or medicated without proper
psycological monitoring. I don't know any ADHD kids who don't know
how to read and write. They are all finally productive in school
because of the knowledge of how their disorder affects them. None of
them are zombies. Just as we need our medication monitored so that we
are not zombies and can be producive.
No, you claimed that people with N have superior intellect. Hmm. I
had never heard that before. Can you cite your sources?
Sorry, I meant corporal punishment.
I've cited a source and given access to more. I'm happy to stop now.
I just am still appalled at the prejudice shown by Nancy when she
herself knows what it is like to have a medical disorder that is
misunderstood, difficult to diagnose, relies on controverisal
medication and can be difficult to get friends and relatives to
accept the truth of. Gee. It seems like there is quite a bit that is
similar between ADHD and Narcolepsy.
Leslie
A person who lives daily with both disorders

Thank you for the notice, Angel... my deepest condolences to you.
Sounds to me like she lived an enviable life, full of years filled
with love and caring from the family. As with any loss like this,
words just can't make things better, they can only let you know that
you are cared for and my thoughts and prayers go out to you and your
kids.
Ray

I have been running back and forth to Brooklyn the pass few weekends.
last week on Sept 5th my "Angel" passed away. We just let our Angel
fly to the heavens yesterday.. I arrived home today..
My heart is soo broken.....
I miss her terribly.....
I got her quilt that has her scent on it which will never get washed!!
She would have been 95 Oct 1st
I am going to sleep now...with her next to me..holding her tight!
I have to go now.....
Just thought I let all of my dear friends know..
God Bless you all..... Angela

To the two people with narcolepsy with whom I correspond privately: You
each owe me a buck. I collect at the conference. It didn't take as
long as I thought it was to shake the nuts from the tree. Now, I think
you see what I'm talking about!
NJV

Thanks Ray!! The puppy thinks so too...Strawberry is his favorite LOL...
wind

Yum, yum, gobble, chomp, gulp, yum, .....ummm.......errrr....I was
just checking to see if the pie is cool yet.....ummm, prety hot
yet...you just go watch Tv, I can handle this predickament....giggle,
yum yum.....

Thank you, Chris, for an intelligent response. Believe it or not, there are persons on this list who have so many experiences with narcolepsy and who are willing to share their experiences providing they don't have to wade through a bunch of other stuff to get to the central discussion: narcolepsy and how it affects persons who have the disorder. Ask your questions. I know you have many.

Nancy

Hope you all have a happy and safe Labor Day!!!
wind

Enjoy your Labor Day weekend everyone! We in the UK had a long
weekend last week, so it's your turn, over in North America, this
weekend!
Brig

Your week getting a little nuts from time to time? Mine sure
does...LOL...just think...smooth sailing ahead.....looooooooooong
weekend!!!!
wind
P.S. The picture is "Kayaking the Caldron on Lake Creek, Colorado"
anyone have a clue what or where that is?

I thought this group was about Narcolepsy for those that have Narcolepsy. I really did not join this group to argue about other disorders. I joined cause I had some questions about Narcolepsy and I wanted to find out just what I have. I found a lot of good people and help here. Now though it is starting to really sound dumb with everyone flaming each other. We have opinions about something. We all have things that will back up our opinions. Let's all agree to disagree in this matter and get back to why this group was formed in the first place, to help other Narcoleptics. I for one could use it...

Chris

In a message dated 6/30/01 4:21:54 AM Central Daylight Time,