NOTHING about narcolepsy has anything to do with ADHD - ADD.
If you have a point to make, please make it. Otherwise, the subject here is
narcolepsy.
Nancy Valencia
P. S. I'm too old and too cranky to explain to you kids these thing. Now,
wake up and start thinking for yourselves.
Symptoms such as inattention and being a space cadet are symptoms
associated with more than one neurological condition including
Epilepsy (some types of) and ADHD - ADD - attention deficit.
For your information, here's a new ADHD Bulletin Board:
Hello Chif,
I didn't see either movie but I've read about the ridiculous depictions of
persons with narcolepsy. I suppose we should all contact our national
associations and suggest that the movies producers be contacted to protest such
nonsense.
If the American Narcolepsy Association were still in business, I'm sure that we
would have a chance to prevent such depictions from ever being made again.
Hollywood Stars such Karl Malden, Jack Lemon, Gregory Peck served on on the
Honorary Board of Directors of ANA. However, as I have clearly explained on
this
list, ANA was put into bankruptcy for no valid reason. With the demise of ANA,
our connections flew out the window.
I think if we all put our heads together, we might be able to come up with some
viable ideas to make Hollywood aware that we already have too many problems to
deal with and don't need the inaccurate portrayals. IDEAS, ANYONE?
Nancy
Time to sleep late....relax.....enjoy the last bits of summer....the
kids will be going to school soon so there wil be peace and
tranquility all around you....Aaaawwwwwww wonderful!
Take time to smell the flowers and enjoy life! :)
wind~~~sifting, softly, through the trees~~~
Dear everyone,
I just thought I would let everyone know
that the latest Baz Luhrman musical/movie 'Moulin
Rouge' has a depiction of a narcoleptic which occurs
briefly at the beginning of the movie. The narcoleptic
collapses to sleep, falling unconscious and falling
through the floor to the apartment below. The main
character therefore ends up taking over the role of
the continuously unconscious narcoleptic. It is
another example of the misunderstanding which people
have about the condition. The idea that narcoleptics
fall obliviously unconscious (asleep) certainly does
not fit in with my experience, and the confusion
between cataplexy and narcolepsy seems to be the
biggest stumbling block which the general public don't
seem to get. I believe that a similar misunderstanding
occurs in the movie 'My Own Private Idaho'. Anyway, I
just thought I'd share that with everyone. Regards, Chif.
Seems like they night have been found - murdered. My thoughts again
are with the girls' families and the small village community.
thank you for the lovely message
Dwain.
No Ray, that can't be you......it's much better looking!!!
OOPS!!! Ummmm, ahhhhh, I meant to say YOU'RE much better
looking......LOL
Brig
Good Morning ,
This was a nice way to start my day and hope you find
it so, too!
@ @ @ @ @ @ @ @
\)/ \(/ \(/ \)/
<*
DRINKING FROM MY SAUCER
I've never made a fortune
and it's probably too late now.
But I don't worry about that much,
I'm happy anyhow.
And as I go along life's way,
I'm reaping better than I sowed.
I'm drinking from my saucer,
'Cause my cup has overflowed.
Haven't got a lot of riches,
and sometimes the going's tough.
But I've got loving ones around me,
and that makes me rich enough.
I thank God for his blessings,
and the mercies He's bestowed.
I'm drinking from my saucer,
'cause my cup has overflowed.
O, Remember times when things went wrong,
My f! aith wore somewhat thin.
But all at once the dark clouds broke,
and sun peeped through again.
So Lord, help me not to gripe about
the tough rows that I've hoed.
I'm drinking from my saucer,
'Cause my cup has overflowed.
If God gives me strength and courage,
when the way grows steep and rough.
I'll not ask for other blessings,
I'm already blessed enough.
And may I never be too busy,
to help others bear their loads.
Then I'll keep drinking from my saucer,
'Cause my cup has overflowed.
A LITTLE SMILE FOR YOU
~ ~
(*) (*)
(____)
This little smile somehow found its way onto your
screen to brighten your day. So pass it along to each
of your friends, To remind them all that friendship
never ends.
God Bless
Awww, you put my picture up again. I thought we were going to put up
someone else's for a change. LOL
It was a false alarm....there was nothing found there, but obviously
the girls are still missing.
Hi there ; just read you message . And everything you said , I went
through. First of all when we are dignosed with N and C our whole family
should be brought in the research hosp. and explained what they are
doing , what things we will go through, they should be given paper work
to read up on while they are there. Scripts Research center did not even
talk to my family about what they were doing . My family sat out in the
waiting room , no one came to discuss anything to them. The doctor walk
right by them like they were not there. So after this was all over , I
gave everybody in my family copies of the eyeopener news paper from
Stanford Univ.
than I found out about support groups that they were having and thats
where I took my whole family to, I was the only one there who took up 4
chairs extra. The group complained about nobody understanding what they
go through.
I stood up and said that is why my family is here, I would like
everybody to tell what was wrong with them and what they experienced ,
Well to day my family understands but not outsiders , Mother , sister,
brother , cousins,
they don't want to hear about it .
So you have to teach them yourself.It's hard
not easy. But life goes on.
Police search overnight for missing girls
Hi folks.
I was recently diagnosed with narcolepsy and am having a lot of
difficulty with the reactions that my friends and relatives have when
I tell them about my disorder. Most of them, despite having known
about my sleep difficulties for years, tend to trivialize the issue,
saying things like "oh you're overreacting" "are you sure it's not
your diet" "maybe you just need to exercise more to give you energy"
etc. Some seem to think narcolepsy is some kind of "hokey
psychiatric disorder" with little medical validity, and they
obviously don't realize that i've gone through a long process with my
doctor of ruling out other possible causes and identifying narcolepsy
as my problem. It makes me angry b/c I was pretty much labeled
as "lazy" since early childhood and now i've come to realize that my
lack of energy has never been my own fault. But casting off that
label and getting people to see my EDS as a medical issue and not a
character flaw is proving more difficult than I had hoped. Has any
one else had similar difficulties? It would be great to hear how
others dealt with this....thanks!
-JDT
Relax sis? You....??? Hmmm something must be up if you're
relaxing!!! LOL
Missed ya sis, but glad you're still having fun travelling around the
state....staying in fancy hotels......enjoying work....hey, I'll jump
on the next plane and be your assistant! You need one don't ya?
<grin
Brig
Hey : I couldn't open up mine either , just a black back ground with
some kind of line through it . But I was glad nothing happen to my
computor.
That last "t" is crossed....that last "i" is dotted....AWESOME!!!! We
survived another MONDAY!!!!!
Time to sit back, relax, ahhhhhh...........
wind
YOU ARE RIGHT CLYNCH, IT IS A VIRUS.
EVERYONE! HEADS UP! THE LIST HAS RECEIVED A VIRUS! DON'T OPEN CHARLES DWAIN'S
ATTACHMENT!!! DELETE IT AND THEN EMPTY YOUR TRASH!!!
I tried to open it but my virus protection apparently wouldn't let me see the
.gif.
I've run my virus program, but my mail program is locked up.
Nancy
I'm in a better mood....lol....things get strange from time to
time....I guess you could call me moody....but I'm improving...LOL.....
I had a cool time out on the western side of Michigan...got spoiled
living in the motel...got time to listen to tapes and sketch, went
swimming after work and did laps...haven't done laps in years and out
of shape but did it anyway....
I don't listen to my own excuses anymore....LOL...tried out a stair
steping machine and its weird....never did figure it out...but used
the stairs most the time....but didn't listen to any excuses about the
elevator either....made myself get in the stupid thing and didn't hold
my breath or hang onto the railing so hard my hands hurt like I used
to do....still got a little sea sick light headed feeling, but I'm
going to see if its something I can trick my mind into getting used
to. Been listening to a possitive attitude tape that says I CAN
change the way I think
The highlight of my trip was putting a tiny baby who was only a month
old in a picknick basket and getting the most awesome
photographs...and then yesterday Dee told me I could have the basket
to keep to bring with me to studios for doing such a good job and
helping out Okee by covering for her so she could attend a funeral and
see some family before they go leave for Korea again....but I had
already told Okee I would work for her before Dee started the butter
job...LOL
Something else awesome was pretending I was a boyscout...sort of....
and getting on a WWII submarine...it was really cool looking and alot
diferent than I expected...the deck was like little boards...and I
looked down a hols that had steps and it was so far down i was
wondering where the rest of the thing was....I had just gotten off
work and had a long skirt on, so I figured not to climb down....would
have liked to tho.....I did go down these stairs and looked under the
top of the boat...it was sort of like a nascar....a fake
exterior....sort of looked like a boat from the outside....but it was
like a shell with beams holding it up sort of foolint a person and
there were holes in the side of the shell....would have liked to see
more but one of the older scouts caught me LOL....darn I wonder how
they guessed....I had my hair pinned up LOL...
it was an awesome experience......the sub....not getting
caught....LOL....as I was leaving one of the troup leaders looked at
me a little funny.....
Well Ray....guess I proved I would make a good boy scout.....lol...ok,
so next time I'll wear slacks....lol......Good night everyone!!!
(hey don't laugh I was a tom boy growing up and I wasn't good at very
much......i was good at running....even better at distance...me and
the best runner would still be going running a 2 mile.....and I could
climb higher and faster than any the boys LOL....was a clutz
LOL.....giggle...always falling out of trees, crashing bikes,
tripping, falling down stairs, even had the garden tractor pin me
once....but wasn't clutzy when it mattered most...like climbing down
from a rooftop getting the baby out of the house when my brother got
mad drunk and broke my sister-in-laws ribs.....ooops......back to my
possitive attitude tape.....lolO
wind
Its Martins 2nd birthday away from me...and it still feels strange
Nancy,
The attachment to his email was a virus. My guess is that he has this list
in his address book and the virus sent itself. He likely doesn't even know
it happened.
CV
Martin, my son, turned 20 at 7:42 pm tonight....not sure why I'm
posting this since he won't ever know it...I guess its a mixture of
happienes and sadness....wishing I was close...making him a cake and
fussing over someone again....and glad I'm not close at the same time...
Just got back from the "coast"....LOL....another Michigan friend
called Muskegon that...west coast of Michigan right on Lake
Michigan....I thnk it would look like standing in the sand on the
coast of a huge ocean....looking out across it all I could see is sky
and water....and in my mind far away thoughta...:)
wind
That's ok Nancy, I missed it too. Was I snoozing?
vickithesleepytennisplayer
Yoo hoo, Earth to Charles,
Is there a connection between value of Canadian and US dollars and narcolepsy
or did you inadvertantly post this message here?
No offense intended. I'm just curious.
Nancy
Happy Birthday Angela!!! Hope you have a nice day......ummm, try not
to get carried away tho.....
Raymond!!!.....Watch her, there she goes.......grab her foot!!!!!
Birthday wishes and prayers are going out to you, Angela.
I'm off on another adventure for work....should be back online Sunday
sometime.....everyne take care and stay safe.
Karen
Los Vegas. The Canadian dollar is approximately 40% less than the USA dollar,
which gives us a strong competitive advantage on our labor.
Angela....I hope your birthday is as good as it can be....and enjoy
your time in Long Island! We're doing fine here, as you said, Karen
and Ray are keeping this group running ok.....we just want you to
drop by every so often to let us know how you're doing, when you can.
We all care about you.
Brigitte
I really wasnt pulling away...its just that I'm not here alot now
with all the running back and forth to visit both people that are not
well at this time..just was giving you a chance to get a new leader..
When I wrote that I just found out about my bestfriend..
I would never leave the club..!!
To many wonderful people in here..Great friends!!
I just came back from seeing my friend and she looked kinda bad..just
had the shunt put into her chest and starts chemo on wed!!!
going back out to see her again this weekend..
I've been living out of a suit cases all summer long..!! this is too
funny.. then going back out to Long Island with Jim..wont be back
till the end of august...
WWWAAA and tomorrow is my birthday too!!! :)
Thanks again for the pick me ups!!
LOVE YOU ALL...OXOXOXOXOXOXOXOXOXOXO
ANG
Theresa, you can find the email address on the website. I don't have it, but you can find it by clicking on this blue line: http://www.lib.uiowa.edu/hardin/md/sleepdisorders.html
Nancy
can you give me the email address for the hardin md links? thanks, theresa
Angela, my dear,
we all go through challenges in life and most of the time, these
challenges take time from us. doesn't mean we should pull away from
the group, whether as a founder or a member. in fact, here is where
you need to be right now, where you can get support, prayers and love.
You just stick around and lean on us, ok? Karen is handling the job
of founder/leader right now and doing fine. Let's let her continue.
I should point out that right now she's been sent out of town to
another studio to help them out, so she'll be online a whole lot less
until she gets back on her own computer, but things are rather quiet
right now so it's not going to be a problem.
Sending you good thoughts and lots of prayers.
Love,
Ray
Hello Again, Everyone,
While on the subject of the "Hardin MD" website, I want you all to note its address:
http://www.lib.uiowa.edu/hardin/md/sleepdisorders.html
This website is a service of the library at the University of Iowa, a place which is near and dear my heart. I am not an Iowan, but a Missourian. Bleary eyed, and growing sleepier, I was living and working in Muscatine when cataplexy surfaced "big time." In 1969 the University of Iowa hospital diagnosed my narcolepsy. I've always been grateful for the early diagnosis. I attribute it to University of Iowa's high standards of academic excellence. While Stanford, UCLA, the University of Michigan have become well known in sleep disorder diagnosis, treatment and in research, the University of Iowa has been doing its work quietly and efficiently.
As a graduate of the University of Missouri, I tip my hat to the University of Iowa, not only for my early diagnosis, but for the "Hardin MD" website.
"Tall corn" isn't the only thing that the state of Iowa produces. Sue Carella, would you agree with that?
Nancy
Hello all, just thought I'd drop a quick line as to what is going on
in my life right now. First my Grandmother is dying.. It would be a
miracle if she lives til the end of the summer. Second I just found
out my best friend who use to be my sister-in-law has stage 3 breast
cancer.. she's divorced and his 1 child and she's only 42 yrs old..
Now I'm back in a cervical collar again hopefully for a few days..
But the latter isnt important right now! I just wanted for you all to
know that its going to be a rough summer for me. For the people that
are in my life and that I love so much. So I will leave it up to all
of you to decide if you still want me to be the group leader. I
wouldnt be upset if you wanted someone else. RAy and Karen seem to be
ontop of things around here... So if its 1 of them you want..I would
be so happy for them.
I really have slacked on being a leader here.. and its not fair for
all of my members for their leader not to be active in the group.
So please feel free to choose if you want.I dont mean to be doom and
gloom but I really dont have the mind to run this and this time..
So God Bless you all.. A BIG THANK YOU for being part of this group!
Take Care all of you..I will check in to see your responses.
I love you all...
Angela
I love flowers so here is a prety little one for all who enjoy
them...I would like to start chats going again, is there any interest
in chats? Any comments from anyone? There were 2 in chat tonight with
me...be ice to get more coming and visiting a little :)
wind
I'd like it. Weekends are best for me because I get home late during
the week and most are in bed on the east coast when I log on.
Ray
As usual, Ms. Nancy is right, this is a terrific site. Thanks to the member
who made it accessible to all of us.
regards,
vicki the sleepy tennis player
Well chat is all done, was fun, I'll try to have regular chats if i
can...nice having this working again.
wind
Hello Fellow Sleepy Heads,
Have you clicked on the link to the Hardin MD lists? If not, please do so. You'll find a very comprehensive list of links about narcolepsy. This is the best list I've ever seen. It goes in my keeper file.
The post requested comments. I've made mine. Now, how about a little feedback from you?
Nancy Valencia
Hi there I think I finally have my chat fixed good enough to see what
people type so I'll be going in the chat room tonight and try it
out....I'll be there by 6pm eastern time, 5pm central time, 4pm
mountain time, and 3pm pacific time...LOL....I'll stay at least an
hour...and longer if people come and get talking :)....
Take care hope you can make it to say hi!
wind
and a big howdy back atcha!
:)
Ray
Want to know where to find the best lists of links on Sleep
Disorders? Please visit our new page at:
http://www.lib.uiowa.edu/hardin/md/sleepdisorders.html
Your comments would be appreciated.
The Hardin Meta Directory (Hardin MD) has been a popular health
portal site for several years, whose purpose is to provide access to
the best lists of Internet sources in health and medicine; we were
recently cited in a US News article on "Best of the Web: Health."
* * * * * * * * *
Eric Rumsey, Hardin Library for the Health Sciences
University of Iowa, Iowa City IA 52242
<eric-rumsey@...
319-335-9875 (voice), 319-335-9897 (fax)
Hardin Meta Directory of Internet Health Sources
http://www.lib.uiowa.edu/hardin/md/
http://www.lib.uiowa.edu/hardin/md/news.html
Well, from all that I have read, narcolepsy is for life. Then again, I have never heard of Post Traumatic Narcolepsy.
Would anyone be willing to send us some videos/footage or trailer
about yourself or ANYTHING dealing with disability subjects and
situations? Anything you send us would include your contact info so
our viewers can contact you. If you could participate by sending us
something, it would bring a lot of recognition your way. All subject
matter would be considered.
Hello. My name is Diane. I represent a web site called... United
People With Dis"abilities." http://UPWD.net We are looking for info
for people with disabilities.
UPWD.net is currently in the process of bringing a new dimension to
our web site. It is called "UPWD Television." Anyone who comes to our
site will be able to click on a subject and watch programs anytime
from their computer. The programs we will be showing will only deal
with disability subjects and situations. Hope to hear from you soon.
Sincerely,
Diane Warner
United People With Dis"abilities"
http://UPWD.net
Hello Group,
Hope everyone is doing well. I have a question, has anyone here ever heard
of Post-Traumatic Narcolepsy? If so, is it long-term or short-term? A friend
of
mine was diagnosed with it after a car accident and I am concerned.
Any information would be greatly appreciated.
Thank You,
Miss Groggy
Nancy,
Why just the back seat?? LOL! I have always done fine driving all these
years. My rule was if I had to ask myself if I was too sleepy to drive
then usually I was and a nap was necessary before getting behind the
wheel.
However recently I have had a few times recently that have scared me, I
will be fine, fully alert when getting in the car. Within minutes I am
doing all the tricks I used to do when I drove long distances. I only
drive in town.... mostly to medical appointments now.
As a passenger, I have found that usually if my mouth is moving {talking
} I stay awake, as soon as I stop for a few moments I am sleeping
either for the moment micro mini or maxi. Even had some of it today...
have also been falling asleep in the middle of typing post!
Please keep me in good thoughts tomorrow, as I get to go see the Housing
Authority! I actually think that is why I have been having so many
sleep attacks last couple of days. Started having cataplexy yesterday.
sleepin' & snoozin'
Kat
Angela....Ray? I tried to put red, white and blue for the page colors
and it sort of popped your eyes out, really bright....LOL.....this ok?
Sending wishes for everyone to have a safe and glorious holliday
today!!! Whether your working or alone, spending time with family or
just a special person....have a fantastic day today!
Wind
Hello Joyce in NH,
I'm delighted to see your post about Narcolepsy Network. I've been a member for
several years and when I can afford to, I attend the annual national
conference. This October it will be held in Long Beach, California. Last year
it was held in St. Louis. There are several members of NN who post and some who
lurk on this list. (One is NN's founder, Sue Carella.)
I'm glad you brought up the subject of membership in NN. I believe it is very
important for persons with narcolepsy to join national support and information
organizations. In the US, Narcolepsy Network serves the purpose. In Canada,
narcoleptics should belong to Sleep/Wake Disorders Canada. Narcoleptics in the
UK can join UKAN. Some of the European countries have such organizations.
Hey! Let's hear about the organizations in Australia from the Aussies on this
list.
Let's hear from narcoleptics from other countries. This is an opportunity to
toot your horn about your own national organization.
Nancy Valencia
Nancy,
The motion of a car is sleep inducing, I COULD fall asleep within seconds as
a passenger, however, if driving, I seem to be able to control this, and I
can tell you how:
Humans, as animals, are prone to becoming conditioned, (i.e. The Pavlov
experiments with the dogs), If a person, narcoleptic or not, is a passenger
in a car many times and each time falls asleep or attempts to, then they
become conditioned to fall asleep whenever they enter a car.
In the Pavlov experiment, Dogs were conditioned that when a stimuli
occurred, they would be fed. For example, If a bell Rang, The dogs would be
given food. Thus the dogs associated food with a bell being rung. So, the
bell was rung, and the dogs would start to salivate, expecting the food to
be given to them.
So, imagine if instead of being a passenger, the person sits down to drive
the car. The person has been conditioned to associate cars with naps, and
therefore immediately becomes sleepy whether they want to or not. ANY
CONDITIONING INVOLVING SLEEP IS AMPLIFIED IN NARCOLEPTICS.
That is why when I am a passenger in a car, However comfortable it may be, I
try to fight the urge to sleep, (it doesnt always work) because when I sit
down to drive tomorrow, I don't want my mind to associate cars with naps.
My narcolepsy makes it difficult and I still get sleepy, but I don't need
any help from association when driving.
Some places I AM conditioned to sleep;
* On my couch before I am supposed to be leaving the house.
* When I go home from lunch.
* When I get home from work.
* After a big dinner
* On the floor during any of my wife's Lifetime Original Movies
-Andy
LOL....you'll be surprised.....its me....wind....the goofy one
LOL...thanks :)
wind
Hello,
I was just wondering if anyone has heard of Narcolepsy Network? I have been
lurking and haven't read of anyone mentioning this group. I receive a
newsletter from them periodically. They are an organization dedicated to
Narcolepsy...and finding its cure. I have been a member for several years
now, and have participated in several of their studies. If anyone is
interested and wants more information, please e-mail me privately.
Currently, they are also looking for narcoleptics to participate in a Double
Blind, Placebo-Control-Group Study that is sponsored by Orphan Medical, a
pharmaceutical company dedicated to patients with inadequately treated or
uncommon diseases. They are most interested in persons with narcolepsy for
its development over recent years of Xyrem for the treatment of cataplexy,
sleep paralysis, and hypnagogic hallucinations associated with narcolepsy.
If anyone is interested in participating in this study, you can e-mail me
privately and I can give you more details. I received this information by
mail today.
Joyce in NH
and it coordinates so well. Who do dat?? Karen?? Angela?? C'mon,
now, which one of you is the decorator??
Many PWN, diagnosed or not, are able to keep their jobs by getting a mini nap
while sitting on the washroom throne. Although the seat isn't the most
comfortable, at least it is private. Yeah, I've been known to say the same
thing to someone. Even though I would wish for a bit longer nap, I am able
to get up and go.
Now, I have a question for you Andy and the other PWN on this list.
Consider the function of a cradle--to rock a baby to sleep. Consider the
number of rocking chairs used by mothers for the same purpose.
Put a narcoleptic in the back seat of a car and sleep sets in almost
immediately. Do you think that the motion of the car is sleep inducing? I
would appreciate thoughts and discussion on this item.
Nancy Valencia
Very nice, Karen. And I want to echo your sentiments. I hope this is
a great day for all the dads in our group.
Ray
Welcome new members!!! Feel free to post something about yourself!
Hope everyone has a fantastic day today!
Wind
Ditto Stacy!!!! I couldn't have described myself so eloquently. LOL
To all dads, I sure hope you have a wonderful day...relaxing, or
working, grilling out or eating out...hope the kids call if they live
far away...or you get little home made cards from toddlers...
My dad is gone so I'm sending out a big hug to all dads who need one
today...you guys aren't just the provider...you're special.
Love
wind
Just to put in my two cents worth,
I have an extremely and painfully difficult time getting
up in the a.m. for work. If I did not have to take my
daughter to school, I am afraid i would be late all the
time. It is ;just a part of my life i have learned to
live with because there doesn't seem to be any way
around this problem, because it does not matter how much
sleep i have had. My boyfriend calls me every morning and
this helps to arouse me some, but i usually go back to
sleep for a few snoozes. I have learned that i cannot make
decisions until i have been awake for at least 45 min because
i am always thinking up how to get out of work while i am still
in my precious bed. I think some pwn have this symptom more than
others, we all seem to vary in the frequency and intensity of
symptoms.
Stacy
Here is one for guys who marry into an instant family and an love the
kids as much or more....
You are our knight in shining armor,
Pilgrim of our plea,
The Atlas for our wounded world,
Our rescuer at sea.
You are the pillar of our hopes,
The deep bass of our song,
The strength that underlies our strength,
The calm for which we long.
You came into our house of dreams
And turned it into truth,
Entering at just the point
Where yearning shatters youth.
What could motivate someone
To bear another's load
But that most beautiful of lights,
The inner lamp of love.
The things you taught me I will always know.
How could I not? The roots have sunk so deep:
All lessons of the heart that I will keep
No matter who I am or where I go.
Kids learn from what their parents are, and so
You are my book of life, the thoughts I reap;
Only in your arms I quiet sleep;
Under my words your voice sings soft and slow.
From you I learned the rules of right and wrong
Against which I at times had to rebel,
Though with regret I carry with me still.
How lucky I am to have been loved so well,
Even as I pushed against your will,
Relying on a father fair and strong.
(Taken from a poems for free website)
Fathers can be solitary mountains,
All their love rock-like, steep, and strong.
Though warm and caring, somehow they belong
Halfway home to mothers' bubbling fountains.
Each of us needs love that knows no quarter,
Reminding us of bonds that cross a border,
Strengthening our sense of right and wrong.
Hi there!! I just got back last night. I got a car Tuesday and an
hour after I had it....(hadn't even gotten home yet)...LOL.....well,
you know....test driving it...giggle...I get a call from my boss...she
was so happy I got a good car, because she needed someone to go to
Saginaw in another district to help them out a couple days or
so....told her I would love to!! Give me a chance to test drive the
car some more! Umm, where's Saginaw? My job paid for the hotel room 3
nights! It was a little tiny studio but I loved the whole thing
including work! Still wasn't any "Hi, Huny I'm home" ...but I got
back to my room and everything was clean!!! Clean towels, bed was
made, trash was dumped...was a little too nice...LOL
I miss the truck...it always felt like my husband was keeping me
safe.....kind of the last link I had to him...I cried driving it that
last time....the poor thing was shaking so bad....the entire dash
board looked like it was going to fall off, like all the bolts were
out of the engine....couldn't drive much over 35 MPH...had to have my
flashers on and take the closest route...the expressway...I cried the
whole way there...sort of felt like going to the funereal again...at
least noone saw...never been so attached to something before
I'm sure praying for Rain for you Ray.
Have to get ready for work...so I'll catch everyone later! Have a
fantastic day!
wind
Dear Nancy Valencia,
In your message to lfoley93 archived at:
Karen's job has taken her out of town for the past few days. She'll
probably not be online before the weekend and I'm sure she's missing
it a whole bunch. I hope everyone has a good weekend; it looks to be
a great one here because there are predictions of rain, something
that is sorely needed right now.
Ray
Congrats to you Leslie and your family on the birth of your new little one.
But cant help out with your question sorry.
Peter and Jane
Angelface's pregnancy is going fine....its a healthy baby boy...and
she knows definately the baby doesn't have spina bifida. She wanted to
thank everyone who helped her out with advice and sites to read. She
was so scared when she found out she was pregnant and everyone was a
really big help to her and calmed her fears.
Don't let this club fool you....It might be quiet...not alot of
posts....but the people here really do listen...and they care.
I'm proud to be a member.
Wind
Hello all:
For those of you who experience "typical" cataplexy, I am very curious about
whether, during a cataplectic attack, you experience pain normally, less than
usual or more than usual. I ask this because I gave birth to my son last
week, and during the "first stage" labor I felt I was cataplectic -- the
midwife was stunned at how relaxed I looked, but the truth was I could barely
move -- even breathing between contractions was difficult. But the pain with
this birth was so much more intense than with my first two children (13 and
10 years ago, before I had many symptoms of N). So it made me wonder if the
extra pain was due in part to the cataplexy I believe I was experiencing.
Thanks...
Leslie G. (Mom to beautiful Liam, born 12 days early at 8 lbs 4 oz ... I'm
glad he didn't wait!!)
Dear Kat:
Narcolepsy is known to have exacerbations of its symptoms from
time-to-time.
After your physician has ruled out any other cause, you probably should
conclude that it is the narcolepsy and prepare to be in this mode for some
period of time. I know. I know. It's the pits.
Sue Brockway Carella
"Ignorance is our enemy; information, our most powerful weapon"
Join us in the Can't Sleep Chat Room Thursday evening at 7:30 PM EDT
for a chat with Barbara Heller, author of How to Sleep Soundly
Tonight.
Read the review of her book here:
http://sleepdisorders.about.com/library/weekly/aa041601a.htm
CAN'T SLEEP CHAT ROOM: http://sleepdisorders.about.com/mpchat.htm
I have a question that at first may seem silly to ask a group of people
with sleep disorders, but I have a very good reason for asking, really!
Have any of you been having {this part is very important here--} MORE
than your USUAL problems with sleepiness? Sleeping more hours than you
normally do? Just feel like that truck not only ran over you but
stopped and put it in reverse and backed up over you again?? And this
has been going on the last couple of weeks??
I would really like to hear from anyone that is experiencing this. I
have been feeling this for the last 4-6 weeks, and since I have several
other disorders, have been trying to find out what was wrong, or was I
in a flair up... etc. However, in the last few days I have been hearing
others, especially those with health disorders are also experiencing
this. I just had alot of bloodwork done on last Thursday, so in the
next few days that should be known. With all the talk of Mono, and my
niece recently had it I was begining to wonder if at 46 was that it??
Any opinions??
Kat
Hi there Kathryn!!! Welcome!!! I'm Karen, I live in Michigan...right
across the crick from Sarnia. What part of Ontario are you in? I
have traveled around London, Kitchner, Cambridge, Toronto....and
recently drove to Hull, Quebec. I have found Ontario to be a
beautiful Province. I'm 44, love traveling, photography and
nature...learning how to be a city person, and handling traffic...
(I did a flying trip to Quebec so I didn't get to actually see much
besides all the cool signs in French...it was awesome even tne stop
sign was in French...but it was still red and the same shape so I knew
to stop...LOL)
wind
Maybe one of the two causes of mono triggers our bodies to kill the brain
cells which triggers N. Maybe they don't. But mono naturally occurs most
often in teenagers. N naturally starts showing up most often in teenagers.
They could be completely unrelated. Also, Andy, a natural side-effect of
migraines is to sleep. And I believe that migraines often start in the teen
years (mine did, and were worst then and have slowly gotten better, but my N
has been getting worse...) I know most of us want to find out "why me" -- in
my case my best "hope" of a why? is anesthesia. But it doesn't help anything
get any better (except I'm very likely to avoid general anesthesia in the
future if I can).
And if you want to find something, you will. The poll about Mono is
completely unscientific and designed for the author to get the answer she
wants. Consider it. She asks "have you *ever* experienced the following
symptoms ..."
o Drowsiness -- anyone on this message board will answer yes.
o Loss of Appetite -- ever in my life? of course!!
o Soar throat -- I don't think I'd be human otherwise.
o Fever -- ditto
o Ill feeling -- ditto
o Headache -- I guess I do know a few people who almost never get
headaches...
I'm sorry to throw cold water on this, but all of us need to remember the
difference between correlation and causality, and lets not waste our time on
questions designed to get a particular answer.
Leslie G.
Hi, my name is Kathryn, I am 19, and I live in Ontario!
Tammy, nice to see you again. :)
Hi,
For the benefit of those of us who are new or just not familiar with the acronyms everyone is using, could you perhaps put what the acronym stands for in parenthesis? That would help and make the postings more interesting to know what everyone is talking about. Thanks,
Have a Great Day,
Joyce in NH
Just making some rounds to some clubs I haven't posted in in a long
time. How is everyone doing? Karen, haven't talked to you inawhile.
Things have been kinda hectic for me lately, but I'm trying to get
things settled down so I can relax a bit more! I haven't been
spending as much time online.
Hope all is well!
Tammy
Hi kkoot,
You need to have a sleep study as soon as possible. Click on the following url:
http://www.aasmnet.net to locate the nearest CERTIFIED sleep disorder center and either have your doc make an appointment for an overnight sleep study or make one yourself. It sounds to me like you have a sleep disorder.
You didn't mention if you snore or not. If you snore, you could have sleep apnea. Sleep apnea is life threatening, but it is easy to diagnose and treat.
How do you know you don't have cataplexy?
You could have a combination of sleep disorders. The essential thing right now is to get seen by a real specialist at a certified sleep disorder center. They will find out what is bothering you and treat you for it.
Anyone with four kids isn't lazy! You have serious responsibilities in raising those kids. You don't have to live your life in a fog and be sleepy all the time. Help is available!
Keep in touch with us and let us know how you feel. I urge you to read the archives on this list. Describing symptoms of some sleep disorders is difficult. Perhaps something someone else has said will ring a bell.
Nancy Valencia
Sorry for being so brief. When I got up a little while ago, I didn't intend to do anything go to the bathroom, get a bite to eat, and read my email, but I had to respond to yours before returning to bed.
could somebody please give me some advice on whether i should keep
my drs appointment or not i dont want to go and be told i am just
lazy . Since i was young far back as i can remember i have always
been tired the last few years seems to have become worse i have
been to the drs trying o find out a reason for this and been tested
for iron levels,thyroid conditions,glandual faver etc with still no
idea why i was so tired until i came up on an artical in the paper
listing symptons of narcolepsy.I have read a few of the letters on
the message board and my symptons dont seem as severe . I do get very
tired in the and after i have taken kids to school i come home and go
to
bed for about an hour wake up feel allright for about 1hr then get
very sleepy again i fight this feeling for the rest of the day until
about 8 at night then i seem to wake up properly and cant sleep till
about 11 i also suffer from sleep paralysis and feel that somebody
is in my room and going to kill me this only happens about twice a
month but has become more freqent lately i dont have cataplexy i
also crave sweet food as soon as i wake up from my nap but not
always i have seen a doctor who has organised for me to see a
specialist in about 2 weeks but i dont know whether to keep the
appointment i just want another opinion from somebody that knows what
it feels like sorry for writing all this stuff but i have nobody
else to talk to and my friends just joke about how much i sleep and
make feel lazy thanks
Hi there I hope everyone had a safe and terrific Holliday yesterday!
I just did some cleaning around the apartment, took a nap and relaxed
for a change...It felt good.
I can't hold a chat in the chat room because my computer isn't
cooperating with me but anyone who wants to visit just drop me a
message on messenger...I'll be here until I go to bed tonight messing
around...I love chatting with anyone!
I have a friend dropping in, in a few days who hopefully can figure
out whats wrong, then I want to hold regular chats!
windwhisper42
Hello Karen its angela..sorry I just came in for a peek and was WOWED
by the colors!!!! Tis alittle to bright for me eyes to take! Sorry
so I softened it up alittle... It is a Beautiful picture though of
Tulips... I hope I didnt upset you by changing the colors..
Hope all is well..
Take Care. Luv Angela
Hi there, here are some tulips to brighten your day!!! Me and
Brigitte67 just got back from a flying trip to Hull, Quebec......there
were tulips everywhere, it was very beautiful! We weren't there long
enough to get many photos so we found this on another site....We all
of a sudden got the urge to go meet an online friend :)....fun to do
things on the spur of the moment LOL....
Hope everyone has a wonderful day!
Love,
Wind
Hello. Thanks to all who e-mailed me with suggestions for programs
for Dis"ability" TV. We will be putting these suggestions up on our
web site in a few days. Any more suggestions can be sent to me or
http://upwd.net
THANKS!!!
Diane
Dear Peter and Jane,
Well it's not a silly question, "mono"is short for mononucleosis.
It affects 2 out of 1,000 adolescents and young adults in the United
States. The Epstein-Barr virus and CMV(cytpomegalovirus) cause mono
to occur and both are part of the herpes family. It is mostly
prevalent in high school and college students. It is spread by
person-to-person contact such as kissing and saliva being transfered
from one hand to another during a handshake. The symptoms include
fever, soar throat, enlarged lymph nodes(especially in the neck),
drowsiness, loss of appetite, enlarged spleen, ill feeling, jaundice,
and a headache. These symptoms are very common and mono is often
mistaken for a common cold. A monospot test can help make it easier
to distinguish the difference between mono and just a common cold.
If someone is positive, the spot that is pricked with the needle
tends to have a reaction by blowing up and becoming red. This is how
you test positive for mono. After the patient is diognosed they
should rcover within 4-6 weeks and sometimes longer. There is no
treatment available. Rest is an important necessity in order to
recover. I myself recieved mono at the age of 12, and then at 13 i
began to experience cataplexy before falling asleep. I was conscious
but unable to move my body, and i was extremely scared. I thought
that it was a seizure that i was having. Then sometimes before
falling asleep id feel jolts where my body would just bounce up, i
found it so odd, and i had no idea what it was. Then i was watching
the news one day and a report on narcolepsy came on, i was shocked to
see the women fall down in the supermarket and being completely
conscious but unable to move. I experience the same thing when im
making the transition of falling asleep. I did my research and then
i realized a connection. I hadnt began these episodes untill after
having mono, and i felt that maybe mono might be the environmental
link that causes narcolepsy. This theory is very important to me and
ive been doing whatever possible to find answers. I developed a poll
that asks what symptoms of mono people with narcolepsy have
experienced. If you feel that you had mono, dont be hesitant to take
the poll. And try to spread the word about it. well thanks for
writing me, this also goes for debbie, thanks for responding to me:)
- Elyse M
Dear Elyse,
I too have wondered if there was a connection between Mono and Narcolepsy. I
was diagnosed with Mono at age 18. Although it took many years following the
onset of symptoms to get a correct diagnosis for Narcolepsy, I have often
thought there was a relationship between the two.
Debbie
Hi. My name is Diane. I am a w/c user. I also own a web site called
United People With Dis"abilities." http://upwd.net
We are going to begin doing TV programs on disability subjects and
situations but we need your help. We are looking for program ideas.
That is why I want to join your group.
You will soon be able to watch TV programs concerning disability
subjects and situations from your computer. We are looking for
suggestions on any subjects that would interest you. All suggestions
will be considered!!! More info for Dis"ability" Television is at:
http://UPWD.net
One of our first programs will be on accessible camping and
vacations. We will be featuring a 150 acre property in New York that
offers both camping and vacations. You can go to....
http://CanaanField.com for a sneak peak.
Sincerely,
Diane
hi!, im new to this whole message board thing, but i was conducting
research on the topic "The Effect of Mononucleosis on Narcolepsy in
Teenagers and Young Adults". I was completely surprised when i came
upon this message board, i was looking for surveys on narcolepsy and
i came across this. I was very happy to find that im not the only
one out there to find that they had began to experience narcolepsy
symptoms after having mono. Id really like to look into this and
find out if there truly is a connection between the two. I am all
alone in this right now and i need all the help i can get. Id really
appreciate if you can help me in someway. thank u soo much
ELYSE M
Hi there and welcome to the club!!! We hope you have a fantastic time
here!!! Please feel free to post something about yourself, and visit
with club members......if you have any questions we would be glad to
find the answer for you :)
Have a great day!
Angela, Ray & Wind
hummmmm.........Naaaa...Can't be an age thing....I'm young and frisky
and....wore right out at night....and I'm just a photographer playing
with the kids, passing out balloons.....capturing smiles....driving
all over Detroit...(even when I don't have to....its called getting
lost....great way to see the sights.....(right Brig??? ;) ))
wind (giggle)
well my neurologist told me the results of my MSLT were "on the
fence" so i have to repeat the test and see what kind of results they
get this time...I asked her to make sure I was at least able to take
it in a room free of ringing phones and she agreed that could have
been a problem. She also gave me a scrip for clomipramine to help
with cataplexy....but i'm wondering if it's worth taking it since my
c is still fairly mild (i think it's getting worse though). anyone
familiar with clomipramine? i'm worried about side-effects common to
TCA's (ie drowsiness--as if i need to be any more tired, weight gain,
sexual dysfunction, etc) will it help with SP and HH in addition to
cataplexy?
thanks-
jeff
i had the same problem and what I have to do now is get my sister phone me.
She has to let it ring and ring for ages, she says that sometimes she leaves
it wringing and goes for a shower comes back and it's still ringing,
eventually I answer and she talks to me for several minutes until she is
sure i'm awake this is really important, and after years of living with me
i'm lucky she can tell. We've been doing this for years now coz it's the
only thing that works for me, maybe you could ask a friend to do the same,
just a suggestion from one'inteligent female' to another Ü
I would like to wish a Fantastic Mothers day to all moms!!! I hope
you all have wonderful day you can remember for a long time to come !!!
wind
this might sound goofy.....but I came from a small town in southwest
Wisconsin (sort of in the middle of nowhere) and the country....most
people go to the country for a vacation....and that's cool.....but I
have been finding the beauty around me in these goofy built interstate
highways that go up in the air and twist around and zig zag all over
the place and still get somewhere...I can drive 80 miles to work and
when I'm not sort of half panicked with all the traffic it's
awesome...if I tried driving that far to work around Wisconsin it
would take forever...the tallness of the building in the city make me
breathless and the night lights on the St. Claire River between the
USA and Canada is so beautiful....I still get a kick out of trying to
skip a rock to the Canada side....(nope so far I can't..LOL)....
Hey and something else cool about the city, TV is deceptive.....I've
sit inching my way in traffic, go a couple inches, stop, go, stop,
stop stop, go .....LOL....and noone is blowing horns or yelling...I
see people around me chatting, and having their music up, and singing,
and tapping their fingers to the music, puffing on cigarettes, cell
phones occasionally.....people are basically cool...
windy...lol
Found this photo on my computer......spring has sprung!!! The trees
are getting green, the flowers can be seen everywhere, the sun is
coaxing us outside more....but we still have days where it seems like
we're running around in circles....LOL....
Hope everyone has a chance to slow down a bit for a few minutes and
smell the flowers...and see the beauty all around us...
Have a fantastic day!
wind
to everyone here. Hope you're all ok, and have a good week!
Brig
I am NOT making light of the problems Nacoleptics
face. What ever gave you that idea...I'll never know.
I am simply looking for answers. I thought that
possibly I do have some form of N. Anyone else have
any input???
Thanks
I'd like to see that too, Karen; wish we could figure out what's up
with your computer so you could get into chats again. :(
Ray
Still having Computer trouble, and I can't get in the chat room at
all....I want to get chats going again!!! I miss visiting with
people and getting to know them!
wind
Hello lfoley93,
I have some suggestions for you. As you read, please keep in mind that you asked for suggestions!
1. Buy two electric alarm clocks with loud, buzzing or ringing alarms. Place one across the room for you. Set it for three minutes after the alarm on the clock next to your bed rings. (You have to get out of bed to turn off the racket coming from the clock across the room.) Place the second new clock further from the bed than the other one. Set the second new clock for 5 minutes after the first one rings.
2. Instead of buying two electric alarm clocks, buy two clock radios; set the clocks to different times as above and set the dial on each the radio to different stations with obnoxious music and set the volume on high.
3. Learn as much as you can about DSPS. Put a bright lamp on a timer, place it near your bed and set it to go on when you have to be up.
4 Engage a wake up service--go ahead, spend your money--it's only money! Hire a gong and a gong player from a local orchestra or band. Instruct the player to hit the gong once and if you don't arise, to use the gong mallet on you! LOL!
5. Reset your circadian clock by getting to bed at a decent hour. Don't let yourself sleep late on weekends. Be consistent and persistent
6. Avoid booze--as well as the illegal recreational drugs, drink coffee sparingly, and that goes for chocolate too. They interfere with circadian rhythms. (If you use illegal drugs or drink too much alcohol, my heart will bleed sour vinegar for you.)
7. Vitamins and minerals are certainly beneficial. Do some reading first. Make sure you have adequate calcium and magnesium per day because you are female and need those minerals. The recommended daily amount (RDA) of calcium and magnesium seems to be adequate for most people, but the RDA of vitamins is pitifully low. Do some research first! Calcium and magnesium do seem to be beneficial to some people who have difficulty getting to sleep, but read about them first!
8. A glass of warm milk at bedtime will help you fall asleep providing you get to bed at a consistent, decent hour. (Milk contains tryptophane which is sleep inducing.)
9. Realize that it is still a "daytime world" which doesn't have much tolerance for night owls. Thanks to Ben Franklin we have a saying which reflects the values of our society: "Early to bed, early to rise, makes a man healthy, wealthy and wise." I have a coffee mug which says, "He who hoots with owls at night cannot soar with eagles in the morning." (FYI, no matter the amount nor quality of night time sleep narcoleptics get, we still experience unrelenting, overwhelming sleepiness during the day.)
10. In my opinion, NO pills for you! AVOID MEDICATIONS! Your problem--DSPS--is solveable without taking meds of any sort and that includes stimulants, antidepressants, and downers. You do not have my permission nor blessing to take any kinds of meds. DSPS doesn't require meds; it requires self discipline, some training about good sleep hygiene, and perhaps some help readjusting your internal circadian clock. We narcoleptics should be so lucky.
.
11. Get some therapy with a good clinical psychologist who is knowledgeable about circadian rhythm problems.
A skilled psychologist can help you readjust your sleep cycle and/or help you find out what your real problem is. I don't recommend a psychiatrist.
12. Learn to listen to yourself: You wrote, "I have a really HARD time getting out of bed in the morning. I have lost SEVERAL jobs because of this. I can barely make a living." You have choice. You can continue on the path of failure which will destroy your self esteem and make you impoverished, or your can change your sleep habits. Deep down, you know what the cause of the DSPS is.
You continued, " It is so frustrating because I am an intelligent woman, capable of most anything once I am awake." This indicates to me that you don't have much of a problem staying awake during the day. I have no doubt that you are intelligent, now use your intelligence. Take control and learn how to readjust your sleep pattern.
You state, "I am just NOT DEPENDABLE." To whom are you confessing? Do you want my blessing to continue being not dependable? NO WAY. If you thought that persons with narcolepsy are not dependable and would therefore give you comfort and understanding, you are wrong. Once diagnosed, the majority of persons with narcolepsy are dependable and responsible because we have learned alternative techniques in addition to sacrificing our personal lives and relationships to the world of work. NOT DEPENDABLE? That is a choice you have made.
If you aren't aware of it, DSPS is an insomnia of sorts. I'm curious to know why you would post your message on a narcolepsy list. Narcoleptics do not have insomnia even though you might think otherwise about our "interrupted night time sleep." (It isn't insomnia; it is part and parcel of narcolepsy. It certainly is NOT the cause of our excessive daily sleeping.) I won't elaborate here about the various symptoms of narcolepsy, but I will tell you that persons with narcolepsy are not difficult to arouse from sleep. We respond to alarm clocks and other external stimulii. You have no idea how fortunate you are. Your sleep disorder is "curable;" ours is not.
Here's a url: http://www.geocities.com/HotSprings/1123/dsps.html
Go read!
It is entirely possible that the sleep disorder center where you had your sleep study done has erred. If it wasn't a certified sleep disorder center, the chance for error increases. Be observant; keep a "sleep journal." Talk with your doc and/or a clinical psychologist. You could have another kind of sleep disorder or clinical depression.
I've been straight with you. I sincerely hope this info helps. I wish you sweet dreams.
Nancy Valencia
Old, experienced, knowledgeable, practicing narcoleptic
I have a really HARD time getting out of bed in the morning. I have lost SEVERAL jobs because of this. I can barely make a living. It is so frustrating because I am an intelligent woman, capable of most anything once I am awake. I am just NOT DEPENDABLE. I turn off my alarm and don't even know that I am doing it. My Dr. suggested putting me on ritalin in the a.m. when my alarm goes off. Has anyone ever heard of this?? Any suggestions?? Has anyone had any luck with vitamins? I will try almost anything! I have had a sleep study done and it doesn't show anything other than delayed sleep phase syndrome.
I have a really HARD time getting out of bed in the morning. I have
lost SEVERAL jobs because of this. I can barely make a living. It is
so frustrating because I am an intelligent woman, capable of most
anything once I am awake. I am just NOT DEPENDABLE. I turn off my
alarm and don't even know that I am doing it. My Dr. suggested
putting me on ritalin in the a.m. when my alarm goes off. Has anyone
ever heard of this?? Any suggestions?? Has anyone had any luck with
vitamins? I will try almost anything!
I have had a sleep study done and it doesn't show anything other than
delayed sleep phase syndrome.
Hello everyone,
I've received a newsletter from Sandman at sleepnet.com and I've pasted it here for your information. For those narcoleptics who also have sleep apnea, take note of Sandman's information from the FTC. I encourage anyone with a sleep disorder to to subscribe to this newsletter.
Nancy Valencia
4/20/2001
This is a periodic letter on new developments in sleep and update
information from
Sleepnet.com. Feel free to share it with a friend!
* Sleepnet.com has a new homepage and new features based on your
feedback.
Most importantly each sleep disorder has a dedicated page with direct
links to all
related information on Sleepnet. Restructuring will continue.
* FTC Consumer Alert!
Can Anti-Snoring Claims Be Cause for Alarm?
Remember the adage, "Laugh and the world laughs with you. Snore and you
sleep
alone"? For chronic snorers and anyone who has to listen to them,
anti-snoring
products (sprays etc.) can sound like a dream come true. But before you
start
catching zzzz's, consider this: Ads for some of these products are
making
unsubstantiated claims that the products can cure or treat the symptoms
of sleep
apnea, a serious, potentially life-threatening disorder. The Federal
Trade
Commission is concerned that these misleading claims may keep some
snorers
from getting the medical treatment they need.
If a product stops the snoring you are probably left with silent sleep
apnea,
considered more dangerous.
Go to http://www.ftc.gov/bcp/conline/pubs/alerts/snorealrt.htm for more
information.
* National Sleep Awareness Week keeps growing every year. This year
was a
special year. William C. Dement, M.D. was chosen to receive the very
first Lifetime
Achievement Award. The award was presented by the National Sleep
Foundation
and honors Dr. Dement's lifetime commitment to sleep science, sleep
medicine and
public health.
Go to http://www.sleepfoundation.org/PressArchives/4awards.html for
information on
all awards given.
Thanks again for all your support. If you come across some information
that you think
should go into this newsletter please email sandman@....
Sleep well and sweet dreams,
Sandman
Dear Friends,
I know this is off topic, please forgive me this one time as I feel this
is a very important reason & situation......
I am asking for a favor for the people of Oklahoma. Please remember them
tomorrow, April 19th. It is the 6th anniversity of the bombing of the
Alfred P. Murrah Buildling. So many people were affected, it is almost
impossible to explain the depth of pain this man caused. Now this year,
on May 16th will be his excusion, and as this whole situation has been
so must the ending be as well it seems.
An "Internet Entertainment Company" has filed suit that its "RIGHTS" are
being violated since it WON'T be allowed to film and show the excusion
LIVE!! Timothy McVeigh even has a show all the way to the end! Please
write to your Congressman and Protest this! Only the families that
choose to see this in PRIVATE, not a CIRCUS SHOW, not allow Timothy
McVeigh go out as some kind of cult hero!
Please for the sake of the people that lost their lives, for the ones
that just couldn't bear to live with the pain and since took their
lives, {yes several have!} and for those that continue to have
nightmares of the horror Timothy McVeigh created, Help shut the doors on
the excusion!
And keep the people of Oklahoma in special thought tomarrow and the next
few weeks.
For those that don't know I have made pages of the memorial, I wrote a
poem that I hung on the fence early on, several of my friends restored
many of the stained glass windows that went through the bombing. I
myself have a piece of shattered stained glass that was blown from one
of the church windows. Below are my URL's for these pages.
Thank you all.
Kat
~~~~~
Heartland Healing Memorial:
http://www.angelfire.com/me2/catsNglass/heartlandMem.html
~~~~~~
Heartland Poem:
http://www.angelfire.com/me2/catsNglass/okcpoem.html
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Photo Point Album OKC photos:
http://albums.photopoint.com/j/AlbumIndex?u=569572&a=5081949&f=0
Hi Jeff
Welcome. I am a relatively newly diagnosed pwn (last June)
and can totally relate to your story. Sounds like you are
a positive diagnosis to me. When I took the MSLT, no one was
in the room with me and it definately would have screwed me
up if someone was there watching me and talking on the phone.
That seems wrong. Anyway, I was just talking to my friend
last night about n and how much of a relief it is to know
there is a reason for all this stuff. I still hate the EDS
and am not excited about having to take meds but at the same
time, I am grateful I have the choice to take meds or sleep.
It does help with work no doubt and with my social life and
my mood in general. So hopefully, you will have this kind of
choice soon. Putting a name to what we have does not change
what we have, but it changed how I view myself and changed
how I handle things-and the option of treatment is great.
I like having choices. Before there was no choice but to
suffer with the symptoms. Getting up to go to work in the morning
continues to be a real drag. I just realize now I can't make
any decisions about my day until I have been up for an hour
(I'm always planning how to get out of work, or work in a long
nap right when I wake up). Let us know how your diagnosis path
goes. take care
stacy
Hello all:
Discover Magazine, April 2001 issue, has a 3-page article on dreams and new
research (written by a Stanford Univ. neuroscientist). Overall, I found the
article only mildly interesting, until I got to what the new research shows.
They (researchers at NIH) have discovered, using PET scans of dreaming
people, that while nearly all of the brain "turns on" during REM, the
prefrontal cortex, otherwise known as the part of the brain which regulates
"executive functioning" does *not* turn on.
"Braun and his colleagues found that during REM sleep much of the prefrontal
cortex as off-line, unable to carry out its waking task of censoring
material..."
What's so neat about that? Because that is the part of the brain which
doesn't work right in people with ADD / ADHD! It is the part of the brain
which is most affected by dopamine enhancers (ritalin, etc.) For those of us
who have wondered what is the similarity between N and ADD (given that our
two disorders are treated by the same medication), here is the start of an
answer! The article doesn't say any of this -- I had to connect the dots
myself. But I'd love to see some professionals connect those dots even
further.
Just thought y'all might like something new to wonder about ...
-- Leslie G.
Thanks for that sis, it's great! I'd heard the reason, season or
lifetime bit but I didn't know about what to do for the different
people.
I totally agree with it, and I can put most of the people in my life
into categories, and now I understand why they were/are in my life I
can accept that maybe they won't all be around forever.
Brig
Hi folks-
How cool it is to see that there are so many support and info
resources on the web for pwn's.
As for myself, I have always suffered from EDS as long as I can
remember. Sleep Paralysis and Hypnogogic Hallucinations started in my
early teens...for the longest time I thought they were all unrelated
symptoms...thought i had hypothyroidism (because my mother has it)
and thought the SP and HH might be from recreational drug use...
After many attempts at figuring out why I was so tired all the time
and many years of joking with friends about my "narcolepsy" (I had
become known for falling asleep in movies, at parties, on the bus,
etc.) it finally dawned on me that it was nothing to be joking about
and maybe I should really consider narcolepsy as a serious
possibility. I think the reason this took so long was b/c of the
popular image of narcolepsy, which equates it with severe cataplexy
and sleep attacks (i know that for me my only exposure to narcolepsy
in pop culture was river phoenix's character in My Own Private
Idaho). I didn't realize there were other symptoms and that you
could have narcolepsy without severe cataplexy...
Then I became aware of a mild form of cataplexy that I DO have:
slight buckling of the knees and loss of muscular tension in my face
and neck when I laugh out loud...I remember describing it to a friend
once as feeling like "i fell asleep for a fraction of a second right
when i started to laugh"...eventually i was able to put it all
together (it's amazing how long this can take huh) and started doing
research online...and lo and behold i realize that i have all the
prime symptoms of narcolepsy. so i saw my primary care doctor
thinking she would probably know nothing about it and tell me i was
crazy. much to my surprise (especially since i was dealing with
kaiser permanente!) she was totally on the ball and called a
neurologist immediately to find out the correct work up...she
scheduled a polysomnogram and mslt for me a few weeks later.
i took those but feel like they might not be so helpful...i was so
bugged out by being in the hospital bed, wired from head to toe, that
i barely slept at all during the polysomnogram....and i had similar
problems during the mslt. with the mslt though, i felt like maybe
this was b/c the guy testing me was in the same room, sitting right
next to me, staring at me, AND he was taking phone calls during my
nap attempts! so now i am waiting for a follow up appointment with a
neurologist to see what they think. to be honest i am totally worried
that they will try to tell me there's nothing wrong with me....but
i'm also just as scared that they'll come back and say i do have
narcolepsy! i guess i have to just wait and see...i am also
wondering why they didn't do a blood test...is that not standard
diagnostic procedure for narcolepsy?
i am glad that i finally am starting to figure out what's up with all
of my sleep issues...there's nothing worse than having these symptoms
and feeling like you have to just put up with them. i am a bit
worried though about the consequences for work and driving. i am
having major difficulty staying awake at work and am not sure what to
disclose to my employer and when (obviously i will wait to hear from
my doctor first)....does anybody know how the DMV handles narcolepsy
in Caifornia? i am very afriad of losing my driver's license. even
though i do get very tired while driving sometimes i've never been in
an accident and i hope that any treatment medication i were to go on
would completely rule that out...but i hear that they can take your
license away anyways....
well sorry to ramble but it feels good to share with people who might
understand how simultaneouly nerve-wracking and inspiring this
process of discovery is...any answers to the various above questions
or general words of wisdom would be appreciated.
thanks!
jeff t.
Monday night: 8PM (Sleep Apnea Chat)
Tuesday night: 11PM (Varies - Watch for announcements)
Wednesday afternoon: 2PM (Narcolepsy Talks)
Thursday night: 11PMCPAP problems)
Friday evening: 11PM (Varies - Watch for announcements)
Saturday night: 8 PM (Your choice - Open Chat)
Join tonight's open chat. All chat times are EDT.
Can't Sleep Chat Room
http://sleepdisorders.about.com/mpchat.htm
Florence Cardinal
sleepdisorders.guide@...
http://sleepdisorders.about.com
Hi Karen,
Yes I remember you! :) I havent' been up to much, same old stuff,
surfing the net mostly :)
You probably don't remember me but I'll send you a message. I'd like
to see what you have been up two lately!
wind
I realized I had N when I read the symptoms on a website, I called a neurologist out of the phone book and he saw me the next day, He had me do some mental and physical excercises to find a base point. This way if in the future I do not perform at the same level, then they can tell that something is wrong.
1. Dx 1 is check for physical-neurological weakness.
2. He had me do a ECG to check for any seizure activity. and an MRI to check for brain deformities, I was curious to see as I had never had a Brain scan. (Although he said that it sounded like N) He said he wanted to rule out other possibilities.
3. Both came back negative (for other problems) so he prescribed a sleep study.
4. Filled out a 20 page questionaire (always be honest on this, they have questions that if you are trying to seem more Narcolepticy than you actually are, they will catch you) There was a point during the docs verbal questioning when he asked me if I had ever had sleep paralysis, I said yes, Then they have a follow up question which will verify if you are telling the truth.(I won't tell you what it is, cuz for some strange reason some people want to lie to get the N diagnosis, I guess it is a Disability issue. And any true Narcoleptic would know the answer.)
5. MSLT, (nap test) 4 naps, if you show N signs on 2 of them, then they don't need a 5th nap, but they will add the 5th nap if you show N signs on 1 of the first 4 naps.
6. Polysomnograph (overnight test) lots of wires and buzzers, Looking for REM sleep, Lack of REM sleep, Lack of Deep sleep, signs of Sleep Apnea, Leg Movement, other Arousals. For some reason lots of people have trouble sleeping, Now, if you are a Narcoleptic, I think you can fall asleep anywhere, and I know when I am sleeping, wherever it is, I believe it is the most comfortable place in the world, and all I want is to sleep.
REMEMBER, none of the above are perfect, the MSLT (#5) is the best test, but it does come back with false negatives and false positives. The #1 indicator of Narcolepsy is Cataplexy. If you have Cataplexy, and get a negative on the MSLT, most doctors will offer another chance on the MSLT, if you don't have Cataplexy, and you come back negative on the MSLT, then your doctor will find it difficult to get your insurance to cover the second test.
-Andy