WP Weblog

Hi Kim, Nice to meet you, glad you are getting
along so well. This is a real nice club. The people
here like to chat as well.But we can't chat unless you

Have you tried it??
Tatiana Petrosian

hi people, my name is kim, i'm a 20/f. i broke my
neck, c5/6, almost 3 years, aug. 27, falling off a
horse. they said i crushed my spinal cord and i was
complete. i've gotten a lot of movement and sensation back.
i'm quite a functional quad. well, if you'd like to
talk, message me. i LOVE talking! hehe<br

if you look on the rosacea-support board, youll find that many people
have tried cutanix. (They were giving free trial sizes before).
several had good results,so you should give it a try.you can search
the archives about people's results/experiences with it.

Hello Mr Mojo and Fellow subscribers,

As a person with narcolepsy, I want to express my deep gratitude to you for spending time and effort trying to find some answers for your coworker. I tip my hat to you because you practice the proverbial "Golden Rule."

http://www.aasmnet.org (click on public area).

Has anyone experienced or observed the special
talent of sleeping standing up? Ah, yes, I'm talented! I haven't had microsleeps when standing for many years; but, I have had the experience when sitting and I've observed it in other PWN.
I don't want to see him fired if in
fact he can't help it. Until he sees a doctor and/or sleep specialist, we don't know what he has. He does have some signs of narcolepsy, but those same signs could also be symptoms of other sleep disorders such as sleep apnea etc. He does have a medical problem and that would be covered under ADA. However, in order to qualify he must inform his employer.

Please keep us informed of what you learn and what happens to your coworker. If he has narcolepsy, invite him to join the discussion.

Thank you, again, Mr. Mojo, for caring.

Nancy Valencia

This is what I wrote, but it makes no sense because I was too sleepy to edit...what can I say except admit that I goofed. This is what I intended to say: During cataplexy, the eyelids close. The PWN is often unable to express what is happening because the voice, being composed of muscles, is losing muscle tone until he/she can regain control.

Pardon my little errors and overlook my whoppers!

Nancy

I see we have quite a few members!! This makes me
so happy... :) Kimmy thanks for posting pic's of
yourself..can you tell us more about you?<br
injured and what is your injury?<br
I-m me if you see me on ok??<br
with you all...<br
the club...<br
ray....

Hello,
I thought this may be interesting to you. A biotechnology company
called Cutanix Corp. (www.cutanix.com) just released a lotion
called "Dramatic Relief". It's a never before seen kind of product
(saw the clinical testing results) that reduces incredibly the
rosacea symptoms. I encourage you to take a look at it because I
think it could help a lot of people suffering from this disease.
Sincerly yours,
Jean-Sebastien Renaud

Dear Concerned Co-Worker:
The symptoms you described in your letter about
your co-worker and friend are very familiar to me.
If he's unable to control the onset of sleep while
he's in the midst of doing a work task, then he
needs to consult with a doctor - preferably a
neurologist who would be more familiar with the
symptoms.
When I first became aware that I needed to go to
a doctor it was back in l970. At the time, I was
working in the records dept. of Los Angeles Police
Dept. Not only did I fall asleep while standing up
on my feet but also while I was using the typewriter
to forward file info on to other P.D.'s. My supervisor
caught me sleeping while standing in one of the file
rooms. It was mid-day, I had slept a full night the
previous night and I wasn't on any meds. for allergies or meds. which
promote drowsiness.
After a trip to the doctor and an overnight visit at
our local hosp., I was diagnosed as having narcolepsy and cataplexy.
Please encourage your
friend to seek a doctor's advice because inability
to keep from falling asleep can happen anywhere,
anytime, and that could mean while driving a car.
Extend your thoughtful concern one step further
and help him even further by urging him to seek
medical advice SOON.
Regards to both of you, Peggy

Dom,
there is no cure for rosacea.
check out this url
http://rosaceans.com/html/cause.html
Scroll down to 'What About a Cure?'
At the most, it may help to control it.
I know of no one who has reported any results
with Ron Tramontano's "cure"
Brady Barrows
On Sunday, August 4, 2002, at 11:09 PM, dombody wrote:
From: "dombody" <dom@...
Date: Sun Aug 04, 2002 11:09:47 PM US/Eastern

I definitely think your co-worker should seek help from a specialist. This way
he will know sooner.

The new colors are very pretty and Yes, they cheer a person up....I Love them
too. Dorla

I found this board researching narcolepsy out of concern for a
coworker. I have observed many times that this guy can sleep standing
up. He can be on task one minute and then abruptly doze off. His head
bobs slightly and he sways a little but doesn't ever fall down. He even
continues a bit of random hand/arm motion so that at a glance from the
rear he may appear to be busy. This lasts for around ten to fifteen
seconds then he resumes the motions of work but usually not for long.
The boss has caught him twice so he's on thin ice. Does this sound like
a person who is continually sleep deprived and sneeking cat naps or
symptoms of narcolepsy? Has anyone experienced or observed the special
talent of sleeping standing up? I don't want to see him fired if in
fact he can't help it.

What about Geoffrey Nase? I thought he did not except commercial money.

I am only 29 myself and I too relate to your letter,
it is frightening sometimes looking at life from this
age and knowing you will have to face all of its
challenges with this condition as well. It has caused
me some very scary and weepy sessions, thinking about
all the things I might never do or become, or all the
problems and potential difficulties that I might face.
I have never had a full time job, and I don't mention
my condition at interviews, but I am still frightened
as to how I would cope in the work place with this
condition, I also worry about having children, and as
Jean mentioned in her post, having a spouse who might
use my condition to make fun of me and not be
supportive. I was also terrified of driving, which
raises all sorts of independence issues, as living in
Australia without being able to drive is very
difficult. This was all even more frightening before
my condition was properly diagnosed, before anyone had
bothered to mention SP and HH. I didn't even know
about them until a year after I was diagnosed with N
and C. Some medical attention huh! Anyway, since
taking dexamphetamine the difference has been enormous
in the case of the N and C. I totally understand your
sense of fear and isolation in regards to your HH. I
too have had the most terryifing experiences, and they
left me feeling totally isolated and withdrawn. So I
started to read about dream theory and sleep studies,
and began to work on my ability to deal with HH during
the dream, but also the feelings they release in real
life. Please don't be offended by the question, but
maybe there's some issues there in relation to your
Harrassment experience that you haven't dealt with in
real life, that is making these attacks so intense and
ongoing. Like Jean I too seem to have dealt with my
HH and SP by confronting it, directly where possible,
constantly relating to myself that it really is a
dream. Alf's advice to preplan pleasant experiences as
a method of preventing scary attacks also works for
me.
It's even sparked off a deeper interest in dreams and
the psychology behind them, to the point where I am
seriously considering further study in the area, both
doing honours in Communication at university, and also
a new degree in forensic psychology. So by facing
your demons, and fears it seems something good really
can come of what seemed to me originally as the most
terrifying and isolating experiences I had ever had.
Also someone else on the list once mentioned sleeping
with the radio on, that seems to work for me also.
Alf also made some excellent points, it really is up
to us to understand our condition, and not beat up on
ourselves for needing to take care of ourselves, naps,
etc. Those people who don't seem either interested or
willing to understand, are not your problem. The only
person you need to worry about is yourself. I totally
understand your need for somebody, either within your
family, or at least a little more tangible than us
folks on the web, but, although my family were with me
and still are, its still difficult for anyone who
hasn't experienced these conditions to really
understand. That's why this email list is probably
one of the greatest gifts. A big thank you to everyone
out there!!! It has helped me enormously reading
letters like yours,because I often have the same
feelings or questions, and also reading the answers
and posts from the other listers, what a wealth of
information we share. Alf summed it up for me when he
said self pity is our worst enemy. That is really the
truth. Not for one minute am I saying that dealing
with these conditions is easy, it's damn hard,and I
still have my weepy days, but I really do believe that
in a strange way it is a gift. I know that sounds all
new age and spiritual, but it has made me a better
person, literally. When Alf mentioned that he has had
to find ways to avoid confrontation, and stress, he
highlighted one of the key areas that has made a huge
improvement in my life. Learning to avoid extremes of
emotion, has had the effect of helping me to centre my
self, I have gained enormously from improved
communication and learning to really listen because I
have to. I know it has made me more aware and
compassionate and it helps me to know that even with
the difficulties of N, C, HH and SP I can still do
anything I want to in life, and probably do it with a
better approach. (Well I'll never be a
supermodel..I'm not talking about fantasy heheehe),
but it's up to me to surround myself with people who I
trust and who can be supportive in their own ways, and
access as much information about the condition as I
can. Accept that I have to take it seriously, and
allow for it in my daily life, naps, medication etc,
but mostly realise that it is something that affects
my whole life, but it is NOT my whole life! It seems
on the whole that we Narcoleptics are a pretty
intelligent, compassionate and sensitive bunch with a
desire to help each other. So hold on tight, you are
very far from being alone and we really do know where
you are coming from. Email me anytime if you need a
shoulder or an ear. My email address is
kez1970@... I hope something in that lengthy
tome is a little helpful. Keep safe, regards
Kerry in Australia.
=====
"Earth...this is God, I need you people out in 30 days,
I've got a client interested in the property."

WE NEEDED SOME CHEERING UP AROUND HERE....<br
LUV ANGEL :)

Please note that my address has changed from Jbahr007@... to
cbahr@.... Thank you and I look forward to the continual support from
everyone.
Christie
**************Get paid to surf the Web! Join now at*************** htt
p://www.alladvantage.com/home.asp?refid=FQH-884 and please use my
membership ID (FQH-884) when asked if you were referred by someone.

Hello there and thanks for joining our
club....please post any information about yourself so we can
learn more about you..<br
questions, please feel free to do so...either ask ray or
myself if need be ok??<br
from you soon...<br

Post received on Friday, 12/03/99 from craftolyn@...
Hi:
Before I say anything to you I want you to know that you are not alone
here with us, and you certainly are not misunderstood by any of us.
Where you are right now, I have been. I am sure many more PWN have been
there too. So, please try to revamp your mindset to being alone. That
will help you pull things together much better and quicker if you know
you are not alone.
HH can be one of the most horrible things in the world, but if it will
help you, it should pass. I believe most of us have has it stop and the
SP as well. Until then, try to revamp the way you handle the HH. When
you start to dream, get into the dream and keep telling yourself it is
all crazy and not real. You can take charge of them to some extent and
it helps with the fear. Having the dog with you surely helps. Knowing
it is quiet during the HH means it is not real or the dog would be
barking it's head off. No one can really enter you space without a
reaction from the dog. Knowing that will remind you that it is not
real, only a hallucination. All I have said probably sounds crazy, but
if you put it into action, you will see and feel a difference. Knowing
it shouldn't last forever also will help you through the rough time.
One thing I noticed about HH is, if I fell asleep while watching TV in
the living room, I would wake up, go to bed, and not have them. Why, I
do not know, but it happened that way. From then on, I would fall
asleep before I would go to bed. The SP went away at the same time.
You say you have no support from your family. It is because they cannot
understand it or don't want to. It doesn't matter!! You understand
what you are going through, your doctor understands what you are going
through, and so do we!!!!! When you are with someone who has no
understanding, do not talk about it and go about your business any way
that you have to! Hold you head up high and pat yourself on the back.
You deserve all the credit you can muster up for yourself. Life for you
includes these problems and you are living with and through them, you
have understanding from the people who need to understand, yourself and
your doctor. All of us too are here rooting for you. You will make it
and you will learn what an important person you are and how great you
are to be able to get through these problems. I happened to be 34 years
old when I started with C and then N. I was diagnosed at 38 years of
age and I suffered through the horrors of HH and SP from the age of 33
to 48 or so. During that time I had my four boys to raise with no
emotional help from my husband. He seemed to use my disorder to poke
fun at me about the C and the need for naps, the mess in the house, etc.
etc. I finally was separated from him in 1981, started to work full
time, went to school in 1984 and graduated in 1989 with a degree in
Nursing. How did I do it? I really don't know other than the fact that
it was something I had always wanted to do since I was a child. Since I
graduated, I passed the boards the first time I took them, I received
my license as a Registered Nurse, I became a grandmother who assisted at
her birth, and started basically to raise her on my own. Then the other
problems of N came into play. The nursing profession became
overpowering because of my N, my C interfered with my patient and family
contact, and my cognitive skills really got in the way. I was having uS
(micro sleep) on the job which was very dangerous. Since all of these
problems prevented me from doing my work as I should, I stopped
working. Since then I am on SSDI and SSI, and my C has increased to the
level where it has taken over my life. I have allowed myself to reach
the pits of depression until I realized I had to keep myself above water
so I can breath and continue with my life, however crappy it seems to
be. Every day I thank God for all of His Blessings.which incluces my
kids, my granddaughter, all of my family, all my good friends, my
pets, a roof over my head, etc., etc., are all the things I am so
grateful for.
Life can be and is beautiful when you look at it with a positive
attitude. You yourself are the one and only to make life a bowl of
cherries! Yeah yeah, I know, so why are we in the pits?? Ha ha! :
This post is probably so disjointed. I really didn't mean for it to
be. When I read your post my heart almost broke for you and I wished I
could just reach out and hug you. Don't know if any of the words I have
written will be able to do that for you, but I sure hope some will
dojust that. You will be remembered by me everyday in my prayers and my
heart. Please try some of what I said in the above, and if it doesn't
work, throw it out. Remember that I sent it all in good faith!
Let us hear from you real soon, please! God Bless you and keep you safe
and well.
Jean
I am too tired to re-read the above for errors. I have to get some
sleep. Nite nite.

love the colour scheme hon<br

A very well written testimonial Alfred. Two thumbs up. This type of
encouragement shows that your are a well rounded, caring person.
Keep up the good work.
Best regards,
John Dyer (sleepy in Georgia)

Thanks ray,<br
it??????lol<br
help.<br
woowee......got 2hrs sleep.. anyway ok, we will chat
later....talk to you soon and thanks for asking! :)<br
angela

Take heart! There are many of us out there who have had similar
experiences and not only survived but prospered. Each person is different
and what has worked for one may not work for another. You, at least have
a doctor who understands the problem. The average for most narcoleptics
is going through 7 doctors over many years before getting a positive
diagnosis.
Catalepsy is far more controllable today. If you have not been to a sleep
clinic for analysis it might be a good idea. See what your doctor says.
Trying to find a balance for medication is by guess and by golly if one
does not know the extent of the problem with which one is dealing. From a
purely non-medical, rash opinion, it would seem that the amount of
medication which you are taking is either not sufficient or it is not
doing the job for which your doctor prescribed it. Dexadrine sulphate or
Ritalin seem to still be the medications most in favour to control
narcolepsy itself and they do have a good effect on catalepsy.
As for HH, when you are ready to go to sleep or when you sense that a
sleep attack is coming on, think of a very pleasant experience which you
had in the past; the more intense the pleasure was and the the more
cleary you can recall, the better. I found that mind set before sleep and
the realisation of what HH were and were not had a great effect on the
conent. I rarely have them now. Fighting them is useless for me and tends
to set me up for an unpleasant experience. Relax! It's not real, no
matter how intense and real-life it feels. Likewhise, sleep paralysis. So
what!!! Big deal. Accept it! Go back to sleep. Relax.
A for the family, keep them informed by downloading articles etc. on the
nature and treatment of narcolepsy etc. and leaving the where they can
more easily read them. Knowledge about the nature of your problem
and what can be done to overcome it will be the best way of getting them
on your side. Make sure that they know that it is information which
should NOT be discussed outside the family. Telling others, outside the
family, can have bad effects not only on you, but also on them. Some
narcolepsy is hereditary in origin. Although it is obvious that some in
your work place know that there is a problem, don't discuss it. They
don't know the whole of it and a little knowledge can confuse them and
make them nervous about having you around. (ie. narcolepsy and epilepsy
can be confused by the ignorant and be damaging particularly if it is
someone who can control your future status in the work place. They don't
have a right to know. If they ask, tell them it's getting better, as I'm
sure it will.
The first neurologist I had told me to keep my mouth shut. I broke this
rule only once to my everlasting regret. That person betrayed my trust
and the result was very difficult to overcome.
Avoid confrontation situations. Develop your skills in finding
alternative solutions to this type of problem. You may find as I did that
it will be a feather in your cap and have a positive effect on your
career. Avoid telling jokes. It may cause others to think that you have
become a sober-sides nut what the hell, that's their problem. I was
teaching (and did for twenty more years after diagnosis) and found that I
became very sensitive in identifying young people who were having
problems but who had not been identified by counsellors etc. This skill
went a long way in compensating for amy quality which I had lost.
You will have four big enemies: confrontation situations, particularly
those involving anger, (make peace, not war); stress is to be avoided
whenever possible; fatigue, although it can often be compensated for by
extra medication, spreading out must-dos is the recipe for survival and
naps, when applicable, are essential; and lastly, but MOST important of
all, self pity is your worst enemy of all. The "Why me?" whine is a sign
that one is losing the battle without ever starting to fight. It is
addictive, counter productive, and should be avoided at all costs just as
pity from others should be emphatically rejected. No matter how bad it
seems, remember that there are otheres around who are worse off than you
and they are still making it.
Finally, just a point of e-mail manners, typing in caps is considered
eqivalent to shouting and should always be avoided.
You are not alone, and if you are misunderstood, it is only by yourself.
Otherwise, two thumbs up! -Alf-

Hi, Angel,<br
Chat soon?<br

craftoly-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=160
If your Doctor cannot help you out more than you intimate in your
messaage, I would say that he is no friend. I don't know where you
live, but perhaps you should consider trading Doctors. There are
medications that can help you--but you must insist on being given
access to them. Have they given you any medications at all? If not,
why not?
Galen

Ok, maybe I should find out what it is, before I go 'all shooty it
down in flames'. I'll check it out. Who knows. "Bad Dom" In dark
and sceptical mood, cause been reading too much internet research
lately.

Hi, Brad,<br
disarticulate". Never heard that before and you say it means you
have nothing below the hips.. does that mean you have
nothing in the way of sensation? Or literally nothing?
I'm a bit naive, I know, but I'm going to get to
learn something new and I love that. It's one of the
things this club and the others I'm in have given me
which I can never repay..<br

I'VE BEEN DIAGNOSED WITH N FOR FIVE YEARS, YET I'VE PROBABLY HAD IT FOR
ABOUT 15 YEARS! I WAS SEXUALLY HARASSED AT WORK 5 YEARS AGO WHEN I
BEGAN NOT TO BE ABLE TO FUNCTION. I HAV HH EVERY SINGLE NIGHT ABOUT
THE HORRIBLE EXPERIENCE AT WORK, I PHYSICALLY COLLAPSE FROM CATEPLEXY
EVERY DAY, AND SLEEP PARALYSIS HAS ME SO SCARED TO DEATH I SOMETIMES
SLEEP IN MY BATHROOM WITH MY DOG IN HER BED!! I GET O SUPPORT FROM MY
FAMILY, AND I HAVE NOBODY WHO UNDERSTANDS ME EXCEPT MY DOCTOR!!!
ANYONE WHO WANTS TO E-MAIL ME, PLEASE DO! MY E-MAIL ADDRESS IS
CRAFTOLYN@... I LOOK FORWARD TO HEARING FROM SOMEONE WHO CAN
RELATE BECAUSE ALTHOUGH I'M ONLY 32YEARS OLD, I FEEL LIKE MY LIFE IS
OVER, OR CERTAILY NOT WORTH LIVING LIKE THIS!

alfred foxgord <alfred_foxgor-@...
The study I was involved in was at:
Sleep-Alertness Disorders Center, Inc
1390 S. Potomac St., Suite 110
Aurora, Colorado 80012
e-mail: sleep_doc_7@...
Web Page: http://sleepdisorderscenter.com
Director of the Center is Lawrence Scrima, Ph. D.
Medical Director: Bradford R. Miller, M.D., Neurologist
The research IND is approved by the FDA(Food and Drug Administration)
and Rose Medical Center's Institutional Research Review Board.

Thank you for joining the club, its great to see
thats its growing..If you know of anyone else that
wants to join...please feel free to let them
know...Rob, please tell the club alittle about yourself....so
we all can get to know you and make new
friends...<br
Angela and Ray...

Hi everyone, I came across another mysterious cure, where the person
will not tell you what it is, but ask you to send money.
Dodgerama. If you knew a cure that's this simple, you would
definately tell everyone for free, don't you think. Fair enough if
it's taken years of your own research to find the answer..but this
just looks dodgy. Anyone ever found out what this guy is on about?:
http://martial-arts-network.com/drron/rosacea.html
Dom

Thank you for a very informative answer. I would like to trouble you for
three more bits of information. Would you please tell me who headed the
study you were involved with, if possible their address and finally, who
sponsored the study.

I am about to go for my first IPL treatment. Has anyone had any
experiences with IPL they want to share?

alfred foxgord <alfred_foxgor-@...
(GHB) GammaHydroxyButyrate is a natural substance that exists in the
body. I understand that it is used industrially in making paper. To
my knowledge it is available as a liquid only (medical quality). It
has not been approved for medical use in the United States by the Food
and Drug Administration, thus my problems in getting it. It has been
used for many years in Europe. I remember having read about it as far
back as 1981 when I was diagnosed.
It has recently been used by predatory types to sedate rape victims,
and alledgedly resulted in the death of some of the victims. The story
should be completed by --it is not medical quality GHB that has killed
people, but a concoction made from a formula in somebodies kitchen
without proper attention to purity. Several states have passed laws
prohibiting owning or using it-I don't know whether there is a
provision for medical use in conjunction with the laws or not--but
hopefully if the legislators did their homework they found out that it
has beneficial, as well as nefarious, uses.

I NEED TO TELL ALL OF YOU OUT THERE SOMETHING
ABOUT CHRIS.....BIGGDOGIZZ.....HE'S STILL NOT DOING
VERY WELL HEART RATE DROPPED TO 38 THEY HAD TO DO CPR
ON HIM. THE DOCTORS STILL DONT KNOW WHATS CAUSING
THE INFECION....<br
THERE TO KEEP PRAYING...EVEN IF YOUR NOT THAT
RELIGIOUS....PLEASE JUST SAY A PRAYER FOR HIM<br
VERY STRONG IN NUMBERS...<br
NOW...SO AGAIN...DO THIS FOR HIM...EVEN IF YOU DONT KNOW
HIM...PLEASE THINK OF OTHERS AT THIS TRYING TIME....ALSO SAY
ONE OR MORE..FOR HIS FAMILY...WHO'S HAVING A
DIFFICULT TIME WITH THIS....<br
THANK YOU, TO ALL OF YOU...<br
ALL....<br
AMEN.....ANGELA AND RAY

My 2nd MRI showed everything is ok in my
brain..(Didnt know i had one! lol lol) So we are just dealing
with the herniated disk in my neck....I'm still in
pain but i guess i have to deal with it now...I'm
wearing a cervical collar and for how long i dont
know....<br
things....Also, I would like for everyone in here to pray for
chris(bigdoggzz) in wheelinon...he's in the hospital and still not
doing well, Dr's dont know what is wrong with him yet.
May he have a speedy recovery...and also pray for his
family to whom chris loves with all his heart. <br
our thoughs and prayers are with you and your family
chris...Be well soon!<br

Pardon my ignorance but I have not been involved with sleep clinics etc
since the late eighties. Obviously things have changed.
GHB is a new one to me and since the cataplectic aspect of Narcolepsy is
still the most bothersome to me would you please tell me what the full
name of the compund is and if possible the manufacturer. Quite often the
names of drugs in the US and those in Canada are not the same. Just
reading the e-mail I have received from others in the group, I have a
list of drugs that are new to me and which I have to look up.
Fortunately, they have opened a sleep clinic here in Victoria so that I
can be reassessed for sleep apnea or whatever without going over to
Vancouver BC.

Hi Brady,
Thanks for that information....I'm glad I never donated money to them. Did
you post this on David Pascoe's board. If not, do you mind if I do so
they are all aware too.
Take care,
Elena

Well, Nancy,
Maybe your phenomenon is like the joke about the person who was injured
in such a way as to cross her rectal nerves with her optical nerves
giving her a "s___y" outlook on life. hehe!
Cataplexy, allegedly, is caused by a "short-circuit" somewhere in the
brainstem which sends out an erroneous signal telling your brain that
you are asleep. Your brain then signals your musculature accordingly,
and it shuts down as directed. This is all caused by an emotional
stimulus of some sort.
Some of the most profound cataplectic episodes I've had were stimulated
by something I observed on television, making them "vicarious emotional
responses".
Is it not conceivable that the "euphoric or reveric" state one may
reach in a musical experience could evoke something similar? In your
case, an optic hallucination! But who was it that you thought you saw?
Van Cliburn?
Eugene List?,Byron Janis?, Horowitz?, or maybe it was Nadia Boulanger?
No, on second thought, you said it was a man.
Yes, as you may have guessed, I am a musician too. I have a degree in
Piano performance, but have done much more singing through the years,
both choral and solo. I worked for the Colorado State Government for
thirty long years, but my passion has always been music. I live in a
private residence, but probably still drive the neighbors crazy when I
play my 7'6" Kawaii grand--and especially when I sing. Peter Serkin
gave a concert here yesterday evening--I don't know why I didn't go
hear him.
I sent a message off to your acquaintance, but have not heard back from
her yet.
What do you think? Could that explain your phenomenon?

Sorry Guys,<br
href=http://www.tc-soft.co.uk/jasper-sci
target=new

Someone helped me (Michelle) find a way to get the Form 990 Report on
the NRS and a copy of the is available online.
In 2000 the NRS received about $954,000 of which over $12,000 was
interest and spent over a million bucks for 'grants, program services,
management and fund raising.' By the way, the total expenditure on
grants was only a little over $94,000 which is less than 10% of the
expenditures. At the end of 2000 the net assets of the NRS was $537,497.
The NRS spent $18,038 for online services, $155,046 for 'program
services expenses' (with regard to the $94,564 grants given out),
$75,219 for the physician referral service, $42,819 for a 'rosacea
hotline,' $174,422 for the Rosacea Review Newsletter, $386,429 for
Awareness and Education, and $148,772 for 'Fulfillment Services.'
This totals over a million bucks.
The NRS has three listed names, Samuel B Huff, President, Dathy J Olney,
Treasurer, and Mary A Earhard, Secretary. It is of note that the only
listed expenditure for "Part II - Compensation of the Five Highest Paid
Independent Contractors for Professional Services"
was paid to Sam Huff & Associates, Inc. of Barrington, IL, for 'Public
Relations' in the amount of $744,075.
You have to be a certified public accountant or maybe one of Arthur
Anderson's men to figure out some of this, but it sure looks like
if you donate to the NRS you can see where your money is going by
reading FORM 990 which is public knowledge available for free.
Maybe there should be another organization for rosacea with a better
expenditure approach?
You can get all this information in a pdf at this url
http://www.guidestar.org
type in the box 'National Rosacea Society'
and search for the FORM 990 pdf for 2000 and you have your own copy.
Brady Barrows

Hello...Is anyone here? I think I detect some breathing sounds coming from somewhere. Gee! I've heard "Asleep in the Deep"--it's an old tuba solo, but asleep in cyberspace is a new one to me!
I would like to see this discussion group continue because we PWN need each other so I'm starting at a new thread hoping to stimulate some responses.
What I'm about to tell you happened to me last week. I live in a high rise apartment building which has a piano in the lobby. Accompanied by my dog, I take music down to the piano and enjoy playing it primarily for my own enjoyment. I have a degree in music, but since I'm no longer teaching, playing the piano keeps me in touch and "in tune," provides therapy for me as it has since I was a child, and also entertains other residents. The lobby is a busy place, but I don't pay too much attention to the comings and goings because I read music and don't play from memory--a legacy from N. Lila Belle, my service dog who is qualified to be a therapy dog, draws attention and because I allow her to be petted, people approach the piano to pet Lila or to listen to the music; some sit nearby to enjoy the music. I acknowledge the each person's presence with a smile or nod and continue playing.
Last week in mid afternoon I was playing "oldies but goodies," the pop tunes of the 50s, 60s, and 70s, from books which I had recently retrieved from storage. I'd been playing for about half an hour and was concentrating on refamiliarizing myself with the music. In my peripheral vision, I noticed a man had approached the piano and was standing in front facing me as he listened. He was quite tall and wore a white long sleeved shirt with vertical stripes. I didn't recognize him from my peripheral vision, but thought that he might be a new resident. When I glanced up to say hello, I caught a glimpse of the man and then he vanished into thin air! I stopped playing momentarily, and blinked my eyes and looked around the lobby. There wasn't anyone who came close to his description. The thought occured to me that I was having HH and I laughed at myself, but then I thought that it couldn't be HH because I was clearly awake and alert. Shrugging it off, I returned to the piano
and began playing another tune. I was enjoying the new selection when I saw the man again out of my peripheral vision! I immediately looked up and saw no one. I was stunned. It was a bright afternoon; I was medicated; I wasn't at all sleepy. Momentarily I sat at the piano wondering what I had seen. Deciding it was time for a change of pace, I took Lila Belle outside for a walk and didn't return to playing the piano for a couple of days.
I'm quite familiar with automatic behavior (AB) which I call "a low alertness phase." Over the years I've learned to avoid doing anything of an intellectual nature during AB because I can't remember what I just did. It's particularly annoying when I try to balance my check book because I finish one bit of calculating and can't recall what I did nor what to do next. If I'm reading a recipe during AB with the intention of cooking something, it's aggravating to forget the ingredient I'm needing to retrieve. Getting two ingredients at the same time is virtually impossible during AB. I have learned to give up and take a nap. Certainly, I recognize that HH can occur during AB and I have had such experiences but this event certainly didn't occur during AB. I was quite alert. Reading music and playing an instrument is a complex intellectual endeavor. I've tried played piano when I've been in a "low alertness phrase," but I make too many mistakes; I don't enjoy what I
hear and just give up. I could laugh at myself and dismiss the vision as HH but it simply isn't like any HH experience I 've ever had. Like other PWN, I've had lots of HH experiences when I've been driving. I call it "dreaming with the eyes open." Realization that an HH event was not real causes me to awaken. I can feel the alertness and change of gears. That didn't happen in this event. Certainly I had lots of HH during naps. At such times when I haven't been able to determine if it was real, I get validation from my environment, my dog, other people, and my own intellect. I was not able to get any validation from my environment, only from my intellect. Yes, I realize the vision of the man wasn't real--at least in this world. I've been puzzled ever since. It's occured to me that I may have had an extrasensory experience--that I caught the image of someone who had been there at some time in the past. I wonder if I was concentrating on the music so much that I was
momentarily "entranced."
What do you think? Anything ever happen to you like this?

Nancy

Hi all,<br
tag onto his domain, shortening it considerably.<br
a look!<br

Golly, gee-whiz and all that kind of stuff. Here I poured out my heart
in my sad tale of woe (GHB), several days have elapsed without even one
little sniffle from any of you sleepy folks. I thought that by now you
would have all come up with a solution, or maybe several, for my
dilemma! I have visions of becoming a basket case spending a lot of
time picking myself up off the floor. Well, just keep those
suggestions and solutions rolling in if you happen to wake up for a few
minutes.

there has always been a concern or interest over profit verses non
profit with regard to rosacea treatment that somehow being non profit is
perceived better - however commercial ventures sometimes are better - it
is nice that there are both, but non profit sure is tricky --- good
thing there are lawyers to sort through all this and raise the price of
all the treatment, right?
an interesting development just recently occurred when the domain name
rosacea.com was bought by Dermik Lab in Feb 2002.
check out this url:
https://www.netsol.com/cgi-
bin/whois/whois?STRING=rosacea.com&STRING2.x=23&STRING2.y=9&SearchType=do
you can see the rosacea.com site at this url
http://www.rosacea.com/
wonder what they paid for the name? It has been for sell for over three
years. Anyway, you can now get some of your information on rosacea at
rosacea.com or rosacea.org
and of course the National Rosacea Society has rosacea.org
that is supposed to be profit verses non-profit since supposedly
non profit sites end in dot.org while profit sites end in dot.com
meaning 'commercial'
what is interesting is how the NRS is sponsored by Galderma which is
obvious since the only links mentioned on their site are physicians
organizations and InfoDerm which is a site owned by Galderma.
see this url
http://www.rosacea.org/links.html
if you note the list of Board of Directors which is very impressive
and then note how many research grants go to the same universities that
the board of directors happen to also be on the faculty you can see
there seems to be a conflict of interest going on, but whom you may have
a different opinion.
see this url
http://www.rosacea.org/grants/board.html
research grants
http://www.rosacea.org/grants/awards.html
Are there any laymen who are rosacea sufferers on the board of
directors? All are medical doctors. I wrote an email to the NRS asking
for a breakdown of their expenses and receipts. So far no response. I
suppose that there is a way to get an account report from a non profit
organization somehow. Maybe someone knows. Maybe there ought to be an
International Rosacea Society that is truly NON PROFIT and will not
accept grants from commercial organizations but the problem is that the
commercial organizations have all the money and donate to these non
profit organizations which are eagerly awaiting the funds to operate.
This is the accepted course for non profit organizations in the USA.
Money whether profit or non profit is still needed. I guess when you
think about it the NRS can do whatever they want with their money and
give it to whomever they please.
David Pascoe is absolutely the only site I have seen that accepts no
commercial sponsors. Does anyone know of another site?
David's site can be found here
http://www.rosacea.ii.net/
Brady Barrows
--
Brady Barrows - webmaster for
http://www.rosaceans.com

I'm going for another MRI to see why Im getting numbness across my face....and
some blood work too.<br
ok?<br

To all in the egroup:
If anyone out there is from Rhode Island, please get in touch with me,
as I would like to start a support group for Narcoleptics and families
and friends. As of this time I have no plans set in cement, so I would
appreciate your reaching me whether you want to join or you just live
in RI.
Hope to hear from Rhode Islanders real soon.
Jean Tooher

Hi

I was wondering how much does all for the dermatologist appointments and the prescription charges i live in New Zealand and these charges are not subsidised so it costs me an arm and a leg $200 a visit plus $150 approx in scripts in nz$ so i make dermo appointments very rarely only when i am desperate perhaps if i went more often i would look better but from what i read on here not neccesarily

Let me know your guys charges i am interested to find out if i am the only one being tight about payments

Coralie

Hi, Scott, and welcome. Ang says you were hurt in
a diving accident... what kind of diving? Scuba?
Sky? High? Cliff? Nose? lol, just kidding on that last
one! :) But I would be interested to know the details
of the accident. If it's a swimming accident, you
would be the 2nd person I've met in these clubs who was
hurt that way. Hope to hear from you soon..<br

I am at a loss as to how I should go about dealing with my latest
"drug" dilemma. My gut reaction is bitterness and great loathing for
the lowlife individuals who use drugs for nefarious reasons; for media
who represent only the popular point of view; and for a public that
takes what the media presents as gospel. You may percieve that I am
feeling a bit sorry for myself, but, I feel sorry, too, for many other
narcoleptics that are in the same predicament.
Let me back up now and fill you in: I have been in a "GHB clinical
study" since mid-1995. I got there because the Cataplexy element of
Narcolepsy had advanced to the point that I was requested(more like
ordered) to go on medical leave until such time that I could function
without falling down at the least provocation. GHB was the answer. I
went back to work and got along great. My boss even admitted that I
functioned better than I ever had while working with her. Yes, I could
even relax and not worry about falling down.
I retired April 1, 1998--actually with accumulated leave, etc., Jan.
31, 1998.
I have been able to function pretty much as I desired, driving when and
where I wanted, so the last almost two years have been good.
Saturday, I got a letter from the Operator of the Clinical Study
saying, Sorry, but we're out of GHB and being unable to find a new
supplier, we are ending the clinical study.
I have about a month's supply of GHB. What happens when it is gone?

Everyone we have another new member, his name is
scottquadc5..just a wonderful person to talk too,<br
in a diving accident,at age 26...<br
feel right at home. thank you.<br

Sorry forgot,
The first derm also gave me Nutraplus urea cream to rub on my face
contains: urea 100mg/g purified water, glyceryl monostearate,
propylene glycol, myristyl lactate, parrain liquid, octyl palmitate,
polyethylene glycol ether, methyl hydroxybenzoate 2 mg/g and proply
hydroxybenzoate 1 mg/g.
Do you think this is ok to use on the melasma, given I have Rosacea
too?

What a great post Nancy. I have learned over the years to research N
and learn as much about it as I can because the Doctors I have had
didnt know very much. (until now) I am very lucky to have found a
doctor in Washington (a hop, skip and jump from my house in Oregon) who
actually knows what he's talking about. He works with Dr. Minot from
Stanford University and trains the staff for new Sleep Labs in the
neighboring states.
Anyway, I chose to cut down on meds when I stopped working due to side
effects. I no longer could handle the upset stomach and such that went
along with the higher dose. I do take a 5 mg of Dextrostat tablet to
jump start me in the morning and then after my afternoon nap. I will
also take one when I know I have to drive outside of town. (I will not
drive if its for more than 30 minutes, by choice)
I have recently started taking a very low dose of protriptyline for the
cataplexy. I have full body cataplexy and this med really seems to
work without any side effects. The other day I laughed, really laughed
and didnt fall down. It was the first time in years I have been able to
laugh and not worry about being hurt. I decided to really put it
through the test and went to see the movie The Bone Collector and in
one scene I came out of my chair about 2 inches and nothing. No loss
of muscle control of any kind. I am looking forward to having snowball
fights with my kids where I might actually win instead of being afraid
to have fun.
Better go for now.
Deidre

Anyone can check out 2 new pic's of my honey and me at a friends wedding..

Hi Tadamson,

Come on in, make yourself comfy, and tell us what's on your mind. If we can't answer your questions, we'll find someone who can! You are no longer alone! We each have unique experiences learning to live with N (we use abbreviations for symptoms.) We sleep all over the world! That is, members of this list live in various places on the globe. How many Aussies are on the list? (Happy Spring to you all down under!) Is the UK represented? I know at least one of us is high--er, uh, that is, she's about 5000 feet above sea level in Colorado USA. :-) As for me, I'm an old timer. Yeah, that's me, fat, feisty 'n 54! Did I hear someone just say, "She's old 'nuff to be my ma?" As I started to say, before the wise crack, I'm in Missouri in mid central USA. Tell us where you are located, your age and first name. Welcome to the "list." The only people who truly understand what it is like to have N are other people with N. You are in good company. Now, I'll shut up 'n
sit down. I know that you need to talk.

Hello Deidre and other eGroup nappers,

I believe we are going to be hearing a lot more experiences like yours Deidre. I've read the posts in many narcolepsy forum about Provigil. You have made an intriguing statement about modafinil being different that Provigil. Did Cephalon alter the formula? Unfortunately the same thing has happened to GHB which provided excellent control for cataplexy during more than 12 years of experimental trials. Orphan Medical slightly altered the formula so that it could own the patent and market Xyrem. I've heard it isn't the same medication.

Nancy

Hi Ian, (sorry for the long post everyone)
Thankyou soo much for the information. My derm told me it was
chloasma, but I had been researching melasma previously and thought
it was that. Although the brown pigmentation patch on my cheek,
didn't really seem to get inflamed, more just kept getting darker
each day I really had no idea why, I even thought it could be
cosmetics I was using.
Interesting you think my Rosacea and Melasma might be related...I
wondered why I would get melasma and rosacea at the same time,
thanks for explaining that.
The Derm gave me John Plunketts 'SuperFade'which I haven't used
because I'm still not sure to... contains hydroquinone 2.0%,
salicylic acid 1.5% and padimate 3.0%, preservatives: chlorocresol .1%
sodium metabisufite .1% and anhydrous .15%
I really don't want to loose the pigmentation altogther (ala Michael
Jackson) and I don't want to make my Rosacea worse, just by trying
to get rid of the melasma.
The first dermatologist told me to put 'Fade Away' only over the
brown areas (which are quite jagged and odd shaped) and a second
dermatologist told me to put it all over my face, even though the
patches are only on my forehead and one cheek...this all over
application scared me even more.
I'm waiting for my Dr.Nase book from America, so I can read up on
photoderm etc. Thanks for the info on Photoderm and melasma/rosacea
too.
I am about to see the first dermatologist again in a few weeks,
because he diagnosed me with chloasma and couldn't explain to me why
I had a stingy and hot face at times, so now I know I have Rosacea I
will see how he treats Rosacea.
Although I think he will probably prescribe me antibiotics (although
the second derm I saw who confirmed I had 'mild rosacea' did not, she
said there was nothing I could do to help it) I am wary of
anitbiotics, as I hear a lot about how they weaken your imune system
more and if I already have a weak immune system, I'm not sure how
this will help.
I went to a Naturapath just after the first dermatologist and she did
a blood test,with the results being I had a very low white blood cell
count and an infection in the liver...which I have since cleared up
by a detox diet (no sugar..just like the Rosacea Diet) So I know my
immune system is not in good health. The naturapath doesn't know
anything about Rosacea though and I didn't expect her to, just wanted
her to check out my systems health to find an underlying cause.
If I go back to the first dermatologist, do you suggest any tests I
should ask for? Should I get him to do a skin swab to see if I have
any mites? And do you think that the stingy, burning sensations I
get across my nose, cheeks etc is a normal symptom of rosacea, or
should I get tested for something else as well.
Sorry to bombard you with so many questions, it's just that you are
the first person who has made more sense to me with your explanation
of Melasma and Rosacea together. I really appreciate the time you
gave me to answer the question I posted.
Beaming smile :D
Dom

We have 2 new members..Welcome badkitchen and
lil-thing!! tell us alittle about yourselves.....<br
didnt post you sooner.but as you can read, i'm having a
bit of a problem with my neck.which kept me away from
the puter for awhile... but i'm so glad that you can
join us.<br
with you.. if you every see us on. please feel free to
i-m us ok??<br
and ray

Hi!
I am new to the group and would like to share something I am trying.
First, I have found Nuetrogena soap for sensitive skin works the
best for me. Also for you women out there, their make-up line is
also for sensitive skin and seems to be the best so far.
As I'm into natural remedies, I have found aloe straight from the
plant leaves has given me some relief and has taken away the
redness. When you first put it on your face will feel strange and
taut. After a few hours the feeling goes away and the face looks
clearer. If the feeling is too uncomfortable for you, mix the gel
from the leaf with a little vaseline. Also, drink plenty of water.
Also, All has put out a detergent that is allergan free and supposed
to get rid of dust mites. I think this is a good product to check
out. I am still trying to narrow down what may cause this for me. I
think dust mites are a part of my problem. Hope this helps. I will
update as I find products that seem to help me.
Tranquility and Blessings,
Rose

Hi All,
I have 2 children both had colic. One is 13 and a straight A student.
The other is 3 and he can look at a picture of over 25 animals and tell
you their name and what sounds they make. Both were 6 weeks early. My
son was 3 lb 12 oz when he came home but caught up quick.
When I was working I took 80 mg of Dex Spanules each day. Now that I
am on full disability I take 45 mg of dex spanules and nap twice a day.
I tried the Ritalin but it didnt work for me. I also was part of the
trials for Modinifil and loved it but when it hit the market as
Provigil it (or me) changed. It made me sicker than a dog. I only
lasted 2 weeks before I went back to the dex. At least I can save the
$400.00 price difference between the 2.
Deidre

Hi all,
I am 46 years old and have suffered with Rosacea for 7 years.
Also had horrible acne as a teen, so I have scars from it and had a
very low self image. But, I have found relief, and thankfully feel
so much better about myself.
I was washing my face with Vegetable Glycerine for three years, using
a mix of Jojoba and sweet almond oil and glycerine for moisture, as
my
cheeks always seemed dry.
As you know, those little crusty peeling things that appear on your
skin never seem to go away, so I needed a scrub that wouldn't feel
like it was shredding my face, so i used toothpaste to get off the
peeling scaling skin. Talk about burn!! NOT good for Rosacea, but
effective.
I realize that what works for one may not for the other, but, my face
was extremely red, not like those people on TV who pretend they have
rosacea to sell the perscription information...I could only hope to
look that good!
Then, I did something VERY stupid and bought a new makeup on sale.
Where I got the idea I could do that is beyond me! My face became so
inflammed and bumps where EVERY where....so bad that I couldn't even
wash in Glycerine anymore, the Jojoba oil and Almond oil weren't
doing
anything but making my face burn.
I HAD to go out of the house so I wore make-up, then came home and
washed it off immediately! so, I switched to another line of
make-up,
that was no better, I spent just under $100 looking for make-up to
cover this horror. I was in tears, scarred, inflammed, mad,
depressed...and in hiding. I never wore make-up at home as time at
home was the healing time...so I allowed only a handfull of loving
friends into my home and to see me as I truly existed. Anyone feel
like that freak in Phantom of the Opera? I sure did.
I love them all dearly, they never seemed grossed out by my ravaged
face. Being red would have been enough, but the ugly bumps that
lasted and lasted, the peeling, the beet red tone of my skin. They
ignored it, and loved me anyway.
I feel like I am writing a book, but I haven't ever shared this with
others who understand and suffer as well...I guess we all stay inside
as much as possible, or maybe my case was truly extreme.
My face was so hot I used the palms of my hands to cool it off. Now
I can't bear to put the palms of my hands on my face because they are
so warm.
Yes, I have found relief. No I don't want to spam you. I got
involved with the 'Relief' so I could help my Kindred Sufferers.
I just wish I had known about it sooner. One of those friends almost
forced me into finding relief...and I'll always appreciate it.
Anyway, I stayed at home and ate. Really, why did it matter? My
hubby loves me, we tease and love and raise our kids and I don't know
why he loves me, I don't know why he stayed around. In the last
3 years, while hiding, I have gained over 100 pounds. My youthful
figure in the ditch along with my face. Depression took hold,
anti-depressants kept me alive. I am not kidding.
When I first was diagnosed with Rosacea after a couple years
wondering
what was going on. Then, when the Metrogel the doctor gave me caused
my face to swell more and itch...it was another blow to my
hopes...Early one morning, I got up went to the bathroom and my hubby
came to me. There I was sitting on the potty (what is it about men
that they don't know women need privacy?) he took my face in his
hands
and kissed me all over...then he said 'I love your bad breath, I love
your beautiful eyes, I love who you are inside, I love your fat, I
love every pimple on your face...' I couldn't quit crying (yes, I did
manage to leave the bathroom).
Since finding the relief I found, I have begun to focus on the weight
issue. I am SO relieved! So thankful! I just wish I had found a
group like this to have receive support from. I don't think this
experience will ever leave my mind, nor will I ever fail to approach
someone suffering like I did that I don't offer them an hour of my
time to share what worked for me.
I think I'll stop here, sorry so long, I was just so glad to find

Hi everyone! I have been recently diagnosed with narcolepsy and while
it is a relief to put a name with what is wrong with me, it is also
frustrating and a struggle everyday. I am looking for someone to talk
to and answer some questions for me. Thanks so much!

Hi eGroup Listers, especially those who live within driving distance of
St
Louis,
A new narcolepsy support group has been formed in St. Louis. According
to the flyer I've received, the new organization, the St. Louis
Narcolepsy Support Group, will hold monthly meetings for people with
narcolepsy on the second Wednesday of each month from 7:00-8:30 p.m.
The kick-off meeting will be November 10,1999--Yikes! That's day after
tomorrow! For more information, future meeting locations, or to talk to
a support group member call: 314-645-4500 or 1-800-446-6624. All calls
are confidential. This group is organized and facilitated by people
with narcolepsy seeking support and information from each other and
invited sleep professionals.
I tip my hat to fellow Narcolepsy Network member Martha Panetti for
setting up the new group.
+-- Message author: Nancy Valencia <nanzzz@...
+-- Please address private replies and chats to the message author
+-- Public replies and shared information address to
narcolepsy@...
+-- [N] website: http://www.narcolepsy.org (AUP, FAQs, Links, Info)

Boy do I wish I had trouble getting food down anytime!!
Well, I guess we all just have to accept how smart we are. I came from a
family on social assistance. I have a Master's Degree in Science so I guess
I get to be a member of your sleepy time smarties. Cool!!

Hi Dom:
You are right but not All RIGHT, you are refering to the medical term
melasma if you do not believe in doctors look at it like that,
it is true, pregnant women have that tendency of develope melasma
(that comes from melanocite) in wich is almost exclusive of women
because estrogen is responsable in some part although men have
melasma too specially if they are exposed to the sun.
Melasma usually dissapear after pregnancy but you have to wear
sunblock.
In rosacea hyperpigmentation is not the same, In rosacea the skin is
inflamed and it doesnt know how to react just after a sunburned so it
produces melanin to somehow protect the skin, the skin does not know
if the agression comes from the outside or the innerbody so react
producing melanin,Is more common in mediterraneans not that much in
very with skins the problem is that the best product is the
hydroquinone but it can be irritating in your rosacea, try 2%
hidroquinone no more unless you want to end up looking like Michael
Jackson he used Mono benzil eter hidroquinone at 40% he bleach
himself because he suffers from vitiligo, always use a sunblock and
the sooner you start the better because if the redish,brownish spots
go deeper in the skin they become like real tatoos, Vasculight or
photoderm are a good option since target melanin as well as blood
vessels or Hb, so you target 2 in 1, Azelaic acid(Azelex) may help
but is slow although it may help with the rosacea component too.
Best Wishes Dr Ian Alarcon.
Remember Melasma not CLHOASMA.
Any questions? write me back and i will get back to you as soon as i
can.

So Sorry to hear that Angela....Hope you get better soon.. And BE CAREFUL.
..Dorla

Hi to all I have to say that I didn't get to catch the ABC program Kerry but
I hope to When it possibly, if not already replays here in South Australia.
I to am happy more often than not with the "dex" like you I get a little
frustrated when I eat out and or in general.
Oh well Better go get some more snooze time so I can have at keast some
energy for my now 6:30Am start down at the airport.Take Care all till next
time...........
Peter

Hi:
Are you trying to sale some product? look if you find something it
really works its ok to sale it, i mean you discover it what you cant
do is play with the faith and the hope of the people, there is no
imbalance when there is solar elastosis, at least in pathology, there
is excesive angiogenesis, tendency to flush in men, we dont go trough
menopause, imbalance may show like muscle cramps, fever,
anemia,headaches, confusion but i havent heard of Rosacea ,hey just
be honest tell what worked for you and if it works sale it although
you already lived it and know how positive would be to all of us.
Thanks.
Dr Ian Alarcon

Sorry for not posting,I have been having bad neck
problems....If anyone had or knows of what I have..please help
me out. thanks.. anyway i have a herniated disk at
c5-6 or bulge as they say...which is pressing my
spinal cord into a corner..and also around 6-7...i have
to becareful lifting or driving, I cant put my hands
over my head, and if i get into a car accident its
emergency surgery for me...hopefully i will make this
somewhat stronger..they are trying. I'm doing traction for
now, and then rehab....If i get hit real hard..i could
be a quad. but, one step at a time...If anyone knows
of this type of neck problem, please feel free to
write to me at wheelsgrl2@... or post a message.
all your help and input is so very
welcome!!!<br
all,<br

Hi there everyone,
just a quick note to let everyone know that the
Australian ABC Program Quantum, did a story on
Narcolepsy last week, and I think it's being repeated
on Monday morning.
I caught it the first time and I thought it was quite
good, but could have covered quite a bit more
information, like drugs and their problems/positives.
But any information is great.
Let me know what you think about it.
Just a note to the "Narcoleptics are smarter than
average" crew, I was a collicky baby, and I am an
honours student. Just to add to your information.
Let us know if you find any other possible
similarities.
Or possible positive aspects to being an N sufferer.
Did anyone else suffer from Migraine, insomnia, when
they were kids.
I have to say that I am really pleased with dex
amphetamine so far, it gives me back my brain
function, it's like cotton wool stuffing has been
blown out, and I can think again.
I find it so hard to get anything down, when I'm
eating out
=====
"Earth...this is God, I need you people out in 30 days,
I've got a client interested in the property."

I knew there was some kind of connection there! My two girls do very well
in schoool but I have to really work just to get them to school because they
would rather sleep than do anything else. They need me behind them pushing
them out the door as I leave for work. My son is also very bright but he
got bored in school and quit after one year of university. He got married
and is now working at a low paying job. I am so sorry he missed the
opportunities he had....love him anyway. He is also very talented at
drawing things. It amazes me how he can draw exactly what he sees or
imagines. Maybe he will pick up on that someday.
Sharron

In a message dated 10/27/99 9:24:34 PM Eastern Daylight Time,
sharron@... writes:
<< Any of the narcoleptics out there
have cholicy babies?
Yes, one of my sons, the middle one, Tyler is his name. He was cholic, and I
might add, about drove me crazy, and some days still does. But he is
incredibly bright!! My other two both have learning disabilities, like mine,
all cognitive. It really bums me out though, because he is unwilling to put
any effort into anything, he could be top of his class, but cares not! oh
well.. Someday he will get it I am sure.
Christie

Hi, again.<br
I am NOT injured, but became involved with several
sci clubs after becoming acquainted with a woman who
had been injured in an mva. Regarding chats, I agree
we need to post times and days for them. Angela and
I have briefly talked about it and I will follow up
with her on it today... we would like to set up a
regular schedule of chats. I'll see that the info is
posted asap.<br

Lanolin oil is a known skin irritant...I personally wouldn't use it on my
face, unless it were a one-time thing.

I saw a request for these a while ago but don't recall seeing them
listed so here they are....
Udderly Smooth Udder Cream
Allantoin, dimethicone, lanolin oil and propylene gycol in an
emollient base.
I have never tried this on my face- had I thought of it before I
might have. I'm currently using jojoba oil and I'm very satisfied
with the results so I don't want to mess with it! However- I use
this stuff everywhere else on my body- arms, elbows, legs, feet, etc.
and I think it is fantastic.

Great!! I look forward to hearing your findings. I have three
children..one from a first marriage and 2 from the second. All three had
cholic in infancy...apparently a sign of increased intelligence but at the
time, I just wanted quiet sweet babies. Any of the narcoleptics out there
have cholicy babies?

What was SP again????

hey hey, just thought id tell you guys about this free debt consolidation site
that reduced my monthly payments by damn near half, no more worries about bills!
http://lpejam.place.cc
I posted this on narcolepsy, if you dont want to be a member anymore just email

"sharron" <sharro-@...
I will have to do some research before I can answer your question-but
I'm sure that I have seen written statements to that effect and heard
oral statements.
We, also, have some genetic attributes that differ from the norm (or at
leas6t most of us do, supposedly). I will try to find my information
about the genetic differences, too, and post them.

Hi All,
Sorry for the acronyms. I had to get used to them fast with a
list I was on when I lived in Idaho. I forget sometimes that not every
one knows them. I even used them on my hubby until he gave me that
"look".
Below is a list of the most commonly used acronyms for anyone who
is interested. Again, sorry for confusing some of you.
Deidre
AB Automatic Behavor
C Cataplexy
EDS Excessive daytime sleepiness
HH Hypnogogic Hallucinations
MSLT Multiple Sleep Latency Test
N Narcolepsy
PLMD Periodic Leg Movement Disorder
PWN Person with narcolepsy
PWON Person without narcolepsy
REM Rapid eye movement
RLS Restless Leg syndrom
SP Sleep Paralysis
SP Sleep paralysis

welcome walker!!! thanks for joining my club.<br
boyfriend is, he's T4-7..<br
ok?? <br

who says that???? If I am really intelligent I have to know the source of
my statement or someone more intelligent than I may challenge it.....

HI all my name is walker66_2000.I'm a T-11 para.
I'm looking for new people to chat with.I was in
Shepherd Center in Atlanta for three months from April -
June of 97. Where any of you there at that time. If so
I'd be interrested in chatting with you. Even if you
wern't I would enjoy makeing new friends. I just got a
computer and on line so I don't know to many people. If
you would like to chat please e-mail me at
walker66_2000@... Thanks for your time walk66

Ok, I want to know:)

Lora

Thanks! Enjoyed the stained glass. The "marbles" are beautiful. Do you sell
your work? Also, enjoyed your explanation of fusing, etc. The fused"quilt" is
marvelous. I've always heard that we who have narcolepsy are above average in
intelligence and creativity. Maybe some small consolation for the affliction
we endure.

You don't have to worry about being too nosy, not
with me anyway. <br
British Columbia. I lived in Vancouver for just over a
year with a friend of my father's when he died. I love
it there! <br
the nature of the society. I find the people here to
be very superficial and materialistic, to a greater
extent that in other cities. I love the cultural
diversity of Toronto, but that is not enough to keep me
here. <br
university on the East Coast, but I am also thinking of
Queen's which is in Ontario (down side). At this time I
am still not sure what I want to study. I have
thought a lot about psychology, or maybe teaching, but I
don't know. I still have a year to make up my mind.
Right now I am in 12th grade, in Ontario we have a
grade 13 (OAC), one more year to go. <br
my brother, his name was Daniel and we were ten when
he died (we were twins). All my other brothers moved
to Canada with us, but my sister stayed in N.
Ireland because she just had her first child a year
before and they did not want to move. <br
think I answered everything, if not let me know for it
was not intentional. Also, if there is anything else
you want to know feel free to ask. <br
keep smiling and dreaming...you're right, they do make
life more fun!<br

Peter,
just a few quick thoughts,
it kinda looks like you are on a low dosage, I am not totally sure since
I take Ritalin, but maybe some "Snoozers" that take the kind of medicine
you do might comment on it. From someone that has been on medicine for
20+ years, I have heard all the horror stories. One thing very common
is Doctors try very hard to undertreat us, and say we should be able to
function. Be we cant, and after years of all kinds of social
unacceptance, we push and push ourselves.
The Doctors {at least in the USA} are afraid of the DEA {drug
enforcement } and therefore don't prescribe what we need to have
"quality of life" I have been on disability for 11 years, and after a
long stressful battle with a Neuro Doc and looking for a year I found a
Psyc Doc that is not afraid to prescribe what I need. And I am on a
high dosage, but also have 14 disorders and this is what I need to
function and have a life. And it doesn't include making a living of my
own.
And I understand about the independence of being about to drive. A stat
from a Narcolepsy research is that the N. population have LESS accident
than the normal......that is the Diagnosed N! Something for your doctor
to know. We are overly careful, once we know what is going on!
And to end with a upswing.....if you want to see what I did for a living
before disability.....and now get to do on a hobby status....
http://www.angelfire.com/me2/catsNglass/index.html
come see my stained glass!
Hope you find a place for a nap or two when you have those 6--6 days!
Kat of Southpawcats

The "experts" say there is not a cure for roseacea. They are correct.
It does not need to be cured. When you have a deficiency and you
correct the deficiency, you have not cured anything. You have
restored balance in your system. That's what I learned and you can
too. What is the help I offer? Contact me and I tell you what I did 7
years ago and have not seen rosacea since 1995. I will tell you what
it is I did. Three steps. You can purchase in your local health food
store. Contact me at christnet_2000@...

I was just wondering if there was some way we could have a index {of
sorts for the lack of better word--lol} at the end of the emails that
listed the typical abbreviations??
I know both sides of this problem.....when writing about such things
and having to type the words over and over {especially with sleepy and
trying to spell some of the words! whoever came up with them never had
Narcolepsy!!} It is much easier and faster to just write N. instead of
Narcolepsy.........
however even tho I have been diagnosised and on ritalin for 20+ years I
dont know what PWN or PWON mean. Can someone tell me those please?
Anyone got an opinion or suggestion as how we could have a defination
index or such?
Just my opinion............:-}
Kat of Southpawcats

Happy Easter, everyone !! :o)

Whinge here :I'm getting so many veins each week it's not funny, Was
doing some net research came across this - has anyone used this
product or one similar? Perhaps it could make your skin worse?
http://www.healthy-networks.com/Quantum/varicose_veins.html
Dom

Well a big HELLO to all my fellow "snoozers" from a place Down Under called
Adelaide in the state of South Australia.
My name is Peter, I'm 39, 6'2" and engaged to a wonderful lady who has
supported me in the last few months since being "officially" told I have
Narcolepsy.I am currently on 5mg Dexamphetamine twice a day and allowed an
extra one only when needed.It has been a very trying time, with my
Narcolepsy especially as I almost lost my licence by my neurologist then my
sleep doc. It was a shock mainly cause my job requires me to drive,I am an
owner driver(sub-contractor) courier with a national air freight company. I
guess when for the last 13 years driving has been my life it wouldn't be
easy to be suddenly asked in a sense for "your keys". My fiance told my
specialists that in a sense to do this with out looking for options and to
totally deny me of driving you might as well "fit him with with a bullet".
Oh well I better go get some sleep as I have a 6:30am start (finish at about
6:00pm, so bye for now and hope to hear from you fellow "snoozers" soon
Take Care and get some sleep !!!!!!!LOL :-)

Hello, again, April. In your note, by "B.C.", do
you mean British Columbia? Vancouver, BC is the only
part of Canada I've been to and I loved it. I went
there to attend a class being put on by IBM and I
stayed on the campus of some university whose name I
cannot remember. But I remember the classrooms... that
was the first time I had ever been in a classroom
that was set up like an auditorium or theater with
rows of tiered seats. I was impressed. (This was way
back in the late 60's!) What is it about Toronto that
you dislike? And what university would you attend? To
study what? How many years of schooling is behind you?
When do you expect to graduate?<br
brother's name and how old was he when he died? Did your
whole family move to Canada? Wow, I'm really being nosy
again. Feel free to answer only those questions with
which you are comfortable.. you won't hurt my feelings
if you choose not to answer certain ones or even all
of them, ok?<br
keep smiling and dreaming... both things make life
more fun!<br

Sorry it took me so long to reply, I honestly did
not see your mesage...I think I am losing my mind! In
response, you are right to assume my brother did not
survive. He pretty much died on contact, I guess I was the
lucky one (that sounds strange).I was still living in
N. Ireland when the accident happened. We moved to
Canada six weeks after I got out of the hospital. I love
parts of Canada, but not fond of Toronto at all. I have
been in Toronto for just over three years and I do not
like it! I hope to go back to B.C for university.
That's all for now, thanks again for the all the great
welcomes! Take care, keep smiling and dreaming!-April

In a message dated 10/24/99 12:44:19 AM Eastern Daylight Time,
galen-barry@... writes:
<< I agree with you- We should limit the use of acronyms in the interest of
everyone's being able to understand messages.
I to must agree. I have been with the group for some time now and I still do
not understand all of the abbreviations. It would make it easier for those of
us who don't always remember all them. Perhaps using the ones that seem to be
about the same in our world, such as N,C, PWN, PWON, HH, EDS, these are about
the only ones that I remember daily. I will actually skip the posts that are
filled with abbreviations.
Christie

Thanks, I have done a lot of research on Chloasma on the net, still
not sure why i got both skin disorders at once or what caused it.
Just wondering if anyone else had both too...I guess I might just be
doubly unlucky. :)
Dom

Hi Angela,<br
in britain for quite awhile, and they certainly are
a great step forward. The only problem i have heard
of is that they are limited to standard sizes and
have a weight restriction (eg - not for my size,
lol)<br

PLMD=periodic limb movement disorder
it is like a cousin to the RLS=restless leg syndorme......PLMD happens
while you are asleep, it does interrupt the sleep cycle thus affecting
the quality of sleep you get.
RLS happens when you are awake, and it effects everyone differently, I
called them leg cramps for years, others say someting is crawling on
them.........the 2 main symptoms that everyone that I have talked to
with RLS is you HAVE to MOVE your legs! When all else fails to work,
you walk the floors all nite until it settles down. The other one is
the word "IRRITATING" you feel like you are climbing the wall or going
bonkers when it is bad.
hope that helps, I do have some sites on both but will have to share
them later. I have read alot about them because I have both.
Kat

<a href=http://www.levo.ch/ target=new
ABOUT THIS NEW
WHEELCHAIR!! IT LOOKS LIKE A REGULAR CHAIR, BUT MAKES YOU
STAND UP!!! NEW FREEDOM!!! I WROTE TO THEM ABOUT IT
ASKING FOR THE PRICES AND A BROCHURE,CAUSE MY HONEY
WANTS TO SEE IT!! I CANNOT BELIEVE THAT IT LOOKS SO
GOOD!!! WHEN I GET MORE INFORMATION I WILL POST IT. TIL
THEN IF YOU WOULD LIKE TO SEE IT FOR YOURSELF CLICK ON
THE LINK ABOVE OR COPY AND PASTE. LET ME KNOW WHAT
YOU THINK OF IT! I KNOW I LOVE IT! TALK TO EVERYONE
SOON...ENJOY!!<br

Confusing, huh?
I will try to clarify:
C - Cataplexy
HH - Hypnagogic hallucinations
EDS - Excessive daytime sleepiness
SP - Sleep Paralysis
AB - Automatic behavior
RLS - Restless leg(limb) syndrome
PLMB - (I don't know what this is) Perhaps someone else can clarify
I agree with you- We should limit the use of acronyms in the interest of
everyone's being able to understand messages.

Dom,

Jasper, haven't heard from you re the patches... did your dad want all 4? I was
planning on sending them all.<br

What the heck is C, HH, SP, AB, RLS, PLMD ? Wish you would not use
abbreviations.
Dwain.