WP Weblog

Hello all. My name is Dustin, 22, male from Iowa. I would like to
chat with someone around my age. Hope to hear from someone soon!
Dustin

In a message dated 4/6/01 4:19:02 AM Central Daylight Time,

Welcome, Dan. I don't have sci either, just an interest in it. I
wanted to share something too that I thought was kind of neat. I
became involved in this and other clubs for the disabled because of
my involvement with a woman who had sci. While I was involved with
her, I told her that I believed that science and medicine could come
up with something that would cure her problem or make it so that she
could get out of her wheelchair and that they would do it in our
lifetime. She didn't hold on to that hope because she was much more
realistic than I. lol ...but recently, I had a chance to visit with
her. She is now married and she is WALKING! Not the kind of normal
walk she once had, but walking nonetheless. She's had one surgery and
is set for a second and I think after that her gait will improve even
more. Right now, she says she walks like she's drunk. But it gave me
chills when she told me of the progress she's made. She still has to
use the chair too, of course, but who knows? Maybe soon she can sell
her chair! I continue to pray for her improvement; she is a special
person in my life.
I've rambled enough, I think. Angela, hope you have a great time with
your honey. Tell your daughter I wish her the best on her b/d.
Ray

I have been out of town a couple days so I sort of slacked off on the
job, but I'm back to cause more trouble in the club now :)
wind

Welcome Dan, hope you enjoy the group.
I've been around, just busy with other things, and then I had a cold,
which I'm now getting over.

Howdy, Miss Groggy.
Turns out that Cataplexy is mostly associated with N, but not always. Here's
what I found on a website:
"Cataplexy is a strange neurologic condition, occasionally confused with
epilepsy. These patients experience sudden loss of muscle tone and fall to
the
floor because of laughter, stress, or frightening experiences. The
cataplectic patient does not lose consciousness but lies without moving for
a few minutes
until normal body tone returns. Cataplexy can exist by itself, or more
commonly, as a feature of Narcolepsy."
I suggest a search of the internet on Cataplexy and look for links that
don't include N. I know it is listed as a stand-alone definition in the
medical dictionaries (meaning that no mention of N is included in the
definition). Hope that helps.
CV

Hi everyone,
I know that C is a symptom of N, but I was wondering if anyone here
has ever heard of someone having C but NOT N?
The reason I ask is because I know someone who says she suffers from
C but believes, along with her Neurologist, that she doesn't have N.
She says her doctor hasn't sent her to a sleep clinic because she doesn't
suffer from a sleeping disorder. Her concern is "why do I have C and not
have N".
I find this strange. I have never heard of someone having C and not
N. I told her see should talk to her doctor and be tested at a sleep clinic,
because you never know what they might find.
Any Thoughts?
Miss Groggy

I asked him to join..its been 25 yrs since we seen each other..
He doesnt have sci..but is here as a friend..
Now by the way..! WHERE THE HECK IS EVERYONE???? NO ONE IS POSTING..
Thats ok,people get busy at times..I should know..lololol
Hope everyone's Easter was wonderful..
I'm not going to be around this weekend..I finally get to spend
sometime with my Sweety.. :)
On mon the 8th is my youngest birthday..she'll be 15 !! WOW how time
passes... anyway..Hope everyone is doing well.
Take Care and God Bless...will talk with you all soon..
Angela

Joe,
Wellbutrin and Wellbutrin SR are fairly new for treating Narcolepsy and
Cataplexy (a year or so I think). They are prescribed like other
antidepressants (Prozac, Zoloft, Paxil) for Cataplexy.
For EDS it produces CNS stimulant effects and is a weak blocker
of the neuronal uptake of serotonin and norepinephrine; just like other
stimulants prescribed.
--- In narcolepsy@y... ---
,
but I know

Sorry Brig, I'll say a prayer for her tonight...
wind

Hello Everyone!!!! I Hope everyones Day is full of sunshine and
smiles today.....doesn't matter if you celibrate Easter or not...I
hope everyone has a truely wonderful feel good sort of day!!!!
Karen Hendricks (aka Wind)

No wonder my email has been overrunning with junk mail...if i were to
get a real email from someone i could easily miss it with all the
garbage I have been getting, Thanks Ray....How did you find out?
wind
--- In angelsscichat@y..., raymo120 <no_reply@y...

She died peacefully in her sleep about 3 hours ago, Saturday
afternoon, at the great age of 101.
Brig

Good thing you looked ray..thanks they did the same to me too!! I
only left 3 items checked..How sneaky they are!! Thanks again.. Have
a Happy Easter And Passover...to All..
God Bless..Angela

Oh, okay, but no baloney from the peanut gallery.
With respect to dreams, it seems like that's all I do is dream all night
long. Sometimes it seems like I'm dreaming that I'm dreaming. My dreams are
so vivid and realistic, that I sometimes have to get up and get something to
eat or drink in the middle of the night. Just sitting up in bed is not
enough, because I have to physically convince myself that I am awake and not
asleep. That's no easy thing to do for night walkers and talkers, lol.
My new tactic to make myself jump to reality is to pull off my bipap mask and
listen to the annoying alarm sound. (sorry about the osa stuff, but it is
relevant this time) Someone once told me that being compliant on IT would
restore REM sleep. OMG, if I had anymore REM sleep and vivid dreams, I'm
afraid I'd call the wagon on myself to please come get me.
So, thinking that my imagination was and is running wild and thinking that
all I do is REM, I decided to look at my overnight studies that I've had in
the past one and a half years (have had six of them plus an mslt, think
that's enough). So, at least the wagon won't come get me for dreaming that
I'm dreaming, wow, I really am. I get no stage 3 or 4 sleep; I'm all REM and
stage 1 and 2.
okay, tired of dream stuff. I need help from you vets out there. Will you
all please tell me in your best descriptive way what your body feels like
when you have c? I'm particularly interested in responses from pwn that have
mild c. I have a sneakin' suspicion that some of the stuff I was blaming on
fibromyalgia just might be c.
Are there others out there whose trigger is anticipation? That's my main
trigger and am wondering if I'm alone with that one. Yes, I read your post
Ms. Nancy, I just want to hear some more, please.
thanks Nancy for the leetle push,
regards,
vickithesleepytennisplayer

Hi there thanks for your help about the disability issue the only problem is i
live in Scotland and the government here (not the scottish parliament but the
westminister one in England) have decreed that N is not a disability so
unfortunately i can't recieve any help but thanks anyway for trying to help..
Lee-Anne
xxx

Ain't dis yar list da strangest! I woz enjoyin' da posts 'n woz
'spectin' more....Iz ever body nappin' or duz da CAT have yer tongue?
LOL!
Hain't no body gonna share yer dreams 'cept da wild 'n wooly ones, I
mean.
Nancy

Meds for Cataplexy & sleep symptoms, I have tried all of them over the
last 20 years and Nothing controlled my C until I tried Zoloft. In time
tho, it didn't control my depression. So my doctor tried me on Celexa.
It controls the C as well as anything ever has, with the least
side-effects. I don't feel like it makes me sleepy or foggy. Also I am
on Ritalin. Nothing else works as well, or else it causes me muscle
pain & cramps since I also have Fibromyalgia.
I know quite a few of other people who are taking Celexa {not PWN} that
find it is helping them alot.
Kat

I'm having trouble posting in several of my groups too, Brig, so it's
not just you, but rather it's Yoohoo!! LOL

post

Hello Jorgi,
<Thanks for such detailed info. I only have EDS but I have the SP, HH, vivid dreams, and have had the AB.
In the last ten years or so a great many people have been diagnosed as having narcolepsy when in fact they do not have narcolepsy, as such, but perhaps have a similar disorder such as IH. It is important that you find out exactly what you do have not because I say so, but because people with IH, as an example, do not respond well to the standard stimulant medications. Perhaps that is the reason why your doc put you on Wellbutrin. IH, although similar to narcolepsy and is often called narcolepsy, it is not narcolepsy because of the lack of C, because naps are not refreshing, because people with IH find it difficult to awaken etc.
The presence of cataplexy is the determining factor, but there is no standardized method of detecting nor measuring cataplexy. If the patient doesn't report cataplexy, doctors are dependent on what is seen in the sleep study charts and the MSLT. The tests are not perfect, but they are better than nothing which was what the situation was when my N was diagnosed (correctly) in 1969. If you haven't had an overnight sleep study, I would recommend that you have one. Much information can be gleaned from the overnight study.

Also, Jorgi, in the last twelve years of constant contact with PWN, I have talked with PWN who said they don't have cataplexy. When they hear or read someone else's descriptions, then they realize they have C but didn't know what to call. (I'm thankful that their C is mild.) C has a wide range in frequency and severity within each person and from person to person. It can be subtle as a drop of the jaw or as gross as total collapse. Dipping, nodding, bobbing, quivering, shaking, quaking, jerking, hobbling, and dropping are some of the descriptions of C. "Jelly legs" and "rubber legs" are also common descriptions of C as it affects the lower body.

Another possibility exists: that your C has not yet manifest. Typically EDS is usually the first symptom. It begins around puberty and becomes progressively worse for years before C shows up "big time." (Usually between 18-25).
And yet another possibility is that the Wellbutrin you've been taking has prevented C attacks.
C or no C, narcolepsy or not, you are entitled to have as much quality in your life as possible.
My first neurologist was certain my condition was just excessive depression.
So many narcoleptics are misdiagnosed because one of the symptoms of clinical depression is excessive sleeping. The neurologist is the proper doctor to treat narcolepsy because it is a physical disorder, not a mental illness.
The second neurologist was much more receptive, thank goodness....I had the MSLT done last November, and was put on Wellbutrin. Unfortunately I've just changed insurance and I'm off to see a NEW neurologist on Monday. I'm finding myself having more and more episodes of closing my eyes because of sleepiness, and I feel like I'm awake and I'm dreaming at the same time. Any idea what THAT is called?
HH, as I mentioned previously, is what I call "dreaming with my eyes open" if I am doing something physical such as driving. When I was young I had a problem with that term "hallucination." I rejected the notion of seeing something which didn't exist in reality during wake state until I had an episode. In real time, I reacted to the scene I was dreaming up! (This is in addition to the fence posts turning into people when I was driving.) In real time, I was driving on US 61 going north. It was a clear, cold winter day in January and I wanted to get home. It was about 9:30 at night and there was very little traffic on the two way road. I noticed there had been an accident on the road ahead. A car pulling a horse trailer had stopped in the road, one person was chasing a horse through the woods while another one was leaning over a horse that was on his side at the back of the horse trailer which had open doors. I decided not to get involved, checked my rear view
mirror for traffic behind me, checked the road ahead for oncoming traffic and went around the scene. When I looked in the rear view mirror, there was NOTHING THERE! No car, no horse trailer--nothing was to be seen except an empty road. I was so stunned by the event that I stopped my car and checked the road. In fact, I turned the car around and drove five miles back and found nothing on the road at all. It was then that I realized that PWN do indeed have hallucinations because we react on them. I believe it quite interesting that it was a mirror that showed reality to me.

Ordinarily, in the bedroom, PWN dream up such stuff and learn, sooner or later, to get validity of reality from the environment, from other people and animals, and from our intellect. Those too are episodes of HH because they are difficult to distinguish between the dream and reality. I believe I should add that the difference between HH and hallucinations suffered by the mentally ill is that once a PWN getd validity from the environment, we don't continue to believe the scene was real. We recognize it for what was: a dream.

Perhaps, Sue Carella, who subscribes to this list, would share her story about Ruth Nebus' HH episode. Oh, yes, the symptoms of narcolepsy make life anything but boring!
One of the characteristics of narcolepsy is called SOREM which is Sleep Onset REM. REM can and does intrude into wakefulness in PWN. One doesn't always have to be paralyzed to have SOREM. The normal population does not have SOREM. SOREM is what shows up on the sleep study charts in persons with narcolepsy.
<I'm just looking for something to provide a more comprehensive attack on the sleepiness. My lifestyle is such that I can't function with all this sleepiness (not like anyone can, but I'm a single mom with a 4 year old son). I appreciate the research you've done - and I'll let you know what the neurologist tells me on Monday! Jorgi

Be sure to tell the doc exactly what you've written here--that your EDS is not sufficiently controlled. Motherhood requires constant vigilance. If you have N, one of the standard narcolepsy medication--stimulants--should give you the control you need. Take a copy of the parameters paper with you. You have the right to try 'em all to see which one works best for you. Until you get control of the EDS with a sufficient amount of appropriate medication, you may want to dispense with the wellbutrin unless, of course, you and your doc determine that wellbutrin is the appropriate medication. It could be that you need more to control the EDS if you have IH. I make no pretense regarding IH. I know only what I've learned from those who have it. I have no experience dealing with it nor the meds which control it. Perhaps someone else can give us information on what people with IH take.

Jorgi, know that you are not alone. Yes, keep in touch and let us know the outcome of the visit to your new neurologist. (You don't have to let your new neurologist know that you are educating him/her! LOL!)
Nancy

Want to see if I can post here. Two of my other groups I can't post

Thats ok, :) Not a problem :)
wind

diden't mean to post that last...oh well!!

Hello,
Response to Lee Anne:
Welcome to the group. I have had problems finding work in the past and
have been fired from many jobs because of N. It can be hard to deal with at
times, especially when people don't understand.
I live in the US and get Social Security Disability and SSI (Supplemental
Security Insurance). Narcolepsy IS covered under the American Disabilities
Act.
The Social Security Administration, defines "disability" as the inability to
engage in any subtantial, gainful activity (Substantial work is defined as:
physical or mental work a person is paid to do, even if it is part-time. Work
is
substanial if gross earnings average over $500 per month after deductions.)
due to physical or mental impairments which can be expected to either result
in death or last for a continuous period of not less than 12 months in a row.
If you can prove the above and are "disabled" under the provisions of Title II
and Title XVI of the Social Sercurity Act, you are disabled and eligible for
benefits. For more info visit, Social Sercurity Online= http://www.ssa.gov/
and Social Security Disability Law = http://www.e-text.com/sslaw/.
For Jorgi:
I have tried several meds including: Provigil, Vivactil, Prozac, Dexedrine, and
Ritalin. I am currently using Cylert, at the maximum dosage. I've been using it
since I was diagnosised in 1992 in conjuction with the the meds I listed
above. Not many people use Cylert for their EDS because it doesn't work as
well as others. I use it because I tolerant better then other meds.
For your research, you can visit my web site Sleepyheads.org
http://www.sleepyheads.org/, click on the Medications link.
As for Neurologists, they don't specialize in sleep disorders, they're not sleep
doctors. My neurologist referred me to a sleep clinic for diagnosis. The sleep
clinic, after diagnosis and treatment, said I could continue seeing them for
treatment or my neurologist. My neurologist said he didn't know much about
sleep disorders, at least not as much as the sleep doctors, and suggested
that I continue treatment with the sleep doctor, but keep him informed. As a
result, I see both; the sleep doc for treatment and the Neurologist for my
annual check ups, blood work etc. Since then my Neurologist took some
classes or something and 'boned-up' on Narcolpesy. So, now if I wanted I
could just see him.
So, Neurologist aren't bad, it's just that sleep disorders isn't their
speciallty.
The problem is finding a good one. I saw two quacks before I found my
current Neurologist.
Regards,
MissGroggy

Welcome to the group, Lee-Anne!
You will find plenty of shared experience here, no doubt! I'm glad you found
us and you should feel free to ask your questions about Narcolepsy here!
There are lots of folks here who have answers!
I know what you mean about the doctor not understanding Narcolepsy and you
having to learn about it on your own. Many of us here have had similar
experiences. I hope you find the answers you need.
I'm not sure what the disability status is here in the US, but that's gotta
be hard...not being able to find a job and yet not being eligible for
disability. I wish you the best of luck and hope to hear from you again!
Clynch
Hi there, my name is Lee-Anne McHugh. I'm 22 and a student
studying Biomedical sciences at Glasgow Caledonian University
(Scotland).
I was diagnosed as having narcolepsy last March after
undergoing several tests and sleep studies..(boy oh boy did the
glue from those electrodes stick to my scalp like nobodys
business)
My consultant or my GP knew practically nothing about
narcolepsy and it was really up to me to find things out about it.
So eventually, a year on I've finally made it to an e-group -
Hooray!!!!!
I've found it really hard to cope with, I lost my part-time job
because of it, I had to take two years away from university, I will
never go on to do Medicine because of it( which is what I've
always wanted to do)....it just makes me sooo mad and
frustrated. I hate it - what about everybody else?
Since losing my job, i have found that nobody really wants to
employ me even though I haven't had a "nap" so to speak in the
waking hours for about 6 months now...(i feel like i'm in AA
*haha* I'm recovering) I'm not even able to get help from the
government because its not "officially" a disability.
My medication took some getting used too, even though I have
been on them for a year now I am still awake for about 4/5 days
at a time then sleep then rest of the week away, Is that the same
for others too? I often want to stop taking them just to get back to
normal but i know this will never be.....ok I'm getting into
depressed mode now but my friends don't know what its really
like - they think its cool because I'm on drugs all the time and i
feel useless...
Anyway, thanks for letting me babble on, I do tend to do this all
the time. It would be nice to hear from other people who go
through the same things as I have been through....although i
wouldn't wish it upon anybody. Y'all catch my drift? Anyway, again
thanks.
Lee-Anne
xxx

I know what you mean, Angel; yesterday we had 62 degrees, nice day;
today, 12 degrees, fog and snow...lol ... tis a crazy year
weatherwise, that's for sure!
Ray

Hi there, my name is Lee-Anne McHugh. I'm 22 and a student
studying Biomedical sciences at Glasgow Caledonian University
(Scotland).
I was diagnosed as having narcolepsy last March after
undergoing several tests and sleep studies..(boy oh boy did the
glue from those electrodes stick to my scalp like nobodys
business)
My consultant or my GP knew practically nothing about
narcolepsy and it was really up to me to find things out about it.
So eventually, a year on I've finally made it to an e-group -
Hooray!!!!!
I've found it really hard to cope with, I lost my part-time job
because of it, I had to take two years away from university, I will
never go on to do Medicine because of it( which is what I've
always wanted to do)....it just makes me sooo mad and
frustrated. I hate it - what about everybody else?
Since losing my job, i have found that nobody really wants to
employ me even though I haven't had a "nap" so to speak in the
waking hours for about 6 months now...(i feel like i'm in AA
*haha* I'm recovering) I'm not even able to get help from the
government because its not "officially" a disability.
My medication took some getting used too, even though I have
been on them for a year now I am still awake for about 4/5 days
at a time then sleep then rest of the week away, Is that the same
for others too? I often want to stop taking them just to get back to
normal but i know this will never be.....ok I'm getting into
depressed mode now but my friends don't know what its really
like - they think its cool because I'm on drugs all the time and i
feel useless...
Anyway, thanks for letting me babble on, I do tend to do this all
the time. It would be nice to hear from other people who go
through the same things as I have been through....although i
wouldn't wish it upon anybody. Y'all catch my drift? Anyway, again
thanks.
Lee-Anne
xxx

In a message dated 3/19/01 5:09:03 PM Central Standard Time,
nanzzz@... writes:

. I would rather deal with C than be foggy headed. .

Nancy,
I agree with you! As much as I hate the C...that awful foggy feeling from
some meds or from not taking adequate stimulants changes my whole outlook on
life. Like most people, I just want to be a contributing member of society
but I will settle most days for just being awake enough to care for my family
and myself. Take Care. Marilyn :)

Was a crazy Day here in CT..Spring didnt know what it wanted to do!!
streets were flooded with snow and rain and mush..lololol
Cant wait for the warm weather to come!! lol
Angela

Hello JorgiAnne,

Welcome to this narcolepsy list.
These are the two prime symptoms of narcolepsy:
Excesive Daily Sleeping (EDS) It isn't fatigue, it is the overwhelming need to sleep characterized by inappropriate sleepiness
during the day no matter how much sleep you've had the night before.
Cataplexy (C) Cataplexy is a lot more than the current medical definition: Sudden rapid loss of muscle tone trigger by emotions such as laughter, elation, surprise, joy, fear, anger, fright etc.
These are the secondary symptoms of narcolepsy:
Sleep Paralysis (SP) Being aware of the inability to move during sleep. In persons with narcolepsy it is misplaced and occurs going into sleep or coming out of sleep. It may be accompanied by HH and Vivid Dreams and can be frightening
Hypnagogic Hallucinations. Dreams which are difficult to distinguish from reality to the extent that the narcoleptic sometimes acts on them believing they are real. For example, a person dreams burglars are in the house, he awakens and calls the police. Although HH usually begins during sleep (and carries over into wakefulness), HH can also occur during wakefulness. Like sleep deprived truck drivers, I've seen more than one fence post turn into a person when I've been driving.
Vivid Dreaming
Automatic Behavior (AB) An awake state quite close to the sleep/wake border in which the narcoleptic is on "auto pilot."
I call it a "low alertness phase" of wakefulness. We can perform things of a routine nature such as driving, but sometimes do some of the most ridiculous things which we discover later.
Amnesia Associated with Automatic Behavior The inability of a person with narcolepsy (PWN) to remember events which occured during AB.
<This past weekend I had two N episodes, and each time it was marked by very vivid, realistic dreams (won't categorize them as nightmares, but I did wake from them feeling out of sorts). My neurologist told me that I would just have to "keep an eye" on my condition and monitor my sleeping to determine how the N was progressing. I'm just curious - I'm on Wellbutrin, and it seemed to be helping, but now I'm not so sure. Is anyone else on medication for N, and if so, what? TIA Jorgi

Jorgi, I listed the symptoms of narcolepsy above for a purpose. Treatment of narcolepsy has a two pronged approached aimed at controlling the two prime symptoms of narcolepsy, EDS and C. To control EDS, stimulants are prescribed. Once the EDS is under control to the level of comfort, then any one of several antidepressants can be prescribed to help control C. In many cases, the antidepressants also control some of the symptoms which occur during sleep. However, the main reason an antidepressant should be used by persons with narcolepsy is to control C. I've heard that Effexor works well in controlling C and the sleep symptoms. GHB, which is still not available except to persons participating in trials, controls C and the secondary symptoms. Clinical trials are continuing for Xyrem. It is undergoing the last of the process of being approved by the FDA.

It seems to me your neurologist doesn't know how to treat narcolepsy. That is not a surprising thing given the lack of training on sleep disorders physicians receive in medical school. Neurologists have less of an excuse and should know how to treat narcolepsy, but the sad state of affairs is that too many don't know. If you have narcolepsy, you will need stimulant meds and possibly an antidepressant to control C. Wellbutrin is a very poor choice to treat any person with narcolepsy although I understand it works well for persons who have another sleep disorder called "Idiopathethic Hypersomnamulence." (IH) (People with IH don't experience C, because C exists only in narcolepsy. For persons with IH, Wellbutrin seems to have a stimulating effect.)

Below I've included a link to information which you should print out and take to your neurologist.
http://www.ngc.gov/guidelines/ngc_1162.html
This "parameters paper" was published by the American Sleep Disorders Association which is now known as the American Academy of Sleep Medicine. It is the certifying agency for sleep disorder centers.
Below is a link to the AASM:
http://www.aasmnet.org
The parameters paper is NOT available (yet) on the AASM website.
Doctors are not likely to prescribe these stimulants unless you have had a sleep study (and MSLT) which indicate narcolepsy.
I have taken Dexedrine (except for a year and a half when I took Ritalin and hated it) since 1969. It still controls my EDS. I haven't built up a tolerance nor am I addicted to it. It gives quality to my life and allows me to choose to nap or not. Because there were no medications given for C control when my N was diagnosed (back in the dark ages), I learned to live with it. When it was discovered that antidepressants could control C, I began using imiprimine, but it made me so sleepy and foggy headed that I dispensed taking it on a daily basis and used it on an "as needed basis" whenever I anticipated being social or in settings conducive to C. It works just as well and does control C, although I have to take a bit more Dexedrine to remain alert as usual. I use it only when I go swimming and when the C is particulary bad. Otherwise, I have moderate to severe cataplexy and have attacks frequently which I control quickly. I would rather deal with C than be foggy
headed.

I hope this information is useful. Keep in touch and let us know how you are doing.

Nancy Valencia

Welcome Back sis!!! I missed you!
wind

I'm on Wellbutrin right now. It seems to be helping, but I'm trying to
research other medications for N because I'm not SURE it's helping. Know
what I mean?

I sure am too, we have grass growing in the back yard, little green
tufts of grass, haven't seen any dandelions yet or little bulbs
growing like I used to In wisconsin....but spring is always
welcome!!! Wish i could see springtime in the Rockyies!
wind

Doesn't take much to get YOU excited, does it?? :))
R
sorry I missed chat last night, but I had a chance to go out to
dinner with my daughter and son, so guess what I chose?? LOL

do me a flavor please godmudder, send at IM to "Apnea" and see the response
you get. I just sent a nice one and got zippo response. Just for a test,
mind you.
shanks,
vic

I put the link to The Club into my aol....and Guess what???
The chat room box is BIGGER !!!!! WOO HOO... I DID IT!!! MUCH BETTER.
Well thats all I had to tell... TeeHee Hee...
angela

I changed the grouping where club should be..
I added it to the spinal cord injuries group. so this way people can
find us a little easier. Hope this brings in more members..If anyone
has trouble with this please let me know..
Your group founder angela a.k.a. wheelsgrl2

Folks, in my Commentary on Service Dogs, it seems I have gremlins at
work. I had a bit of difficulty storing the file and kept getting a
message that the file was corrupted so I copied what I had written to a
clean message template, assigned the email a new name, deleted the
corrupt file and sent the message, but it looks like a couple of
paragraphs have been repeated without my permission or knowledge. I'll
blame the computer gremlin and ask for your patience.
Nancy

Hello Marilyn, Hello Sue and other PWN,

Because of the very nature of narcolepsy, we tend to become reclusive and sedentary. Avoiding social situations and physical activity are the most usual ways of coping with cataplexy. Before anything else gets done, the nap comes first. Even with adequate medication, we have to make concerted efforts to get ordinary chores done. We spend so much energy earning our bread that we find ourselves loafing (bun pun intended!) after work. Post midnight raids on the refrigerator really "broaden one." Add to this mixture, computers and the internet where a lot of us exercise the intellect but not the bod, and up pops one good formula for an early exit--a WBO, the one time "without a body experience." If you don't use it, you loose it.

In times between periods of employment, I gained weight. That was my situation in eleven years ago. I knew I needed to get exercise, but couldn't motivate myself to do so. I needed something to get me off my duff. So I decided to get a dog because I needed companionship in my life and I knew that a dog would have to be walked and that would give me a certain amount of physical exercise. I thought I would be able to select the dog I wanted from a variety of pups, but when I arrived at the Human Society, all the cages were empty except for one which contained a wiggly lively friendly black chow/lab mix pup. This pup was the first arrival after the place had been disinfected due to a distemper outbreak. In September 1990 I adopted the chow/lab pup, eleven weeks old, and named her Lila Belle Da Dawg. Lila's tongue is pink with black spots; she is stocky--thick necked, short legged and shorter than pure bred black labs, and her ears are a longer floppy version of the
short pointed chow ear. She has expressive golden eyes, a trait of black labs.

Now, I knew that chows tend to be one-person dogs, but had I known that they are also willful and independent, I probably would have waited for other pups to arrive at the pound. Her willfulness and stocky build from her chow side, the pleasant, joyful, social disposition from her lab ancestors and innate intelligence make her an excellent choice as a Service Dog. However, from day one her willfulness repeatedly tested my patience during her puppyhood. She is the only dog I've had who did not respond to the command "come." She wanted to investigate everything, everywhere. She knew what "come" meant, but she just ignored me whenever she was off the leash. Additionally, she would bolt from the door almost faster than I could think. I can't recall how many times I've chased her through the neighborhood. You bet, every step I took, I was cussing. When on the leash, she had such strength that she came close to pulling my arm out of socket. Thinking that I needed to get
a harness, I went to the pet supply store and related my problem. The man said that I didn't need a harness. He put a vicious looking chain-like collar on her and walked her around the store. She yelped a couple of times, but she no longer pulled on the leash. He said, "Now, you have power steering!" I bought the prong collar. I had solved one problem, but her willfull disobedience continued to aggravate me until someone suggested that I take her to obedience school. At first, I balked at the idea. After all, I'd had other dogs who were well behaved and came when they were called. I considered my dilemma and decided to take her to obedience school.

The first level (beyond puppy kindergarten) consisted of ten weeks of training. Standard obedience school consists of seven levels of ten weeks per level. (Training is aimed toward accomplishing the "three legs" of the CD--AKC's "Campanion Dog" designation. All show dogs have completed the CD.) The trainer doesn't train the dog; the trainer instructs the owner/handler how to train the dog. Homework is essential. Lila loved going to school. It was an opportunity for her to socialize with other dogs. During the first three levels, our class--12 dogs and their owners--met once a week on a large, well lit parking lot in the back of a pharmacy. Classes were no longer dependent on weather when the trainer's new building was completed. No more "barking lot" for dog education! As I mentioned previously, Lila and I were in school for 70 weeks. Along with other class members, we repeated levels three and five. (Sometimes it's best to hold the kids back!) In December 1991
our class presented the first "Christmas Show." It consisted of an elaborate "drill" to demonstrate all that the dogs had learned. For example, we marched forward with our dogs, put them on a "downstay," circled around in back of 'em and walked over each dog. (I clearly remember having cataplexy but, I focused, am was able to continue walking and stepping over each dog.) Marching forward with the dogs, we formed a circle, left the dogs on a "stand stay" and wove in and out of the ring of dogs. I was so proud of Lila! She was obedient and did every thing correctly. When I saw the video tape of the show, I noticed that Lila was the only dog in the circle who was wagging her tale to the beat of the Christmas music used during the drill. I wish we could have continued to levels six and seven, but I didn't have the money. However, Lila and I have sufficient training so that she is an effective service dog. .

Lila didn't become a "service dog" until I moved into public housing. I live in a specially designated building which houses the disabled and elderly. When I brought her into the building, the housing authority tried to evict me. At that time I was vaguely aware that companion animals (dogs, cats, etc.) had been proved to contribute to the health and well being of their owners. When I did a bit of research, I learned that I could self certify Lila as a service animal. The housing authority refused to believe the regulations in the Code of Federal Regulations and my case was eventually adjudicated by HUD Secretary Andrew Cuomo, himself. He told the housing authority that I had the right to self certify my service dog and that the housing authority had better obey or lose its federal funding. (The housing authority has attempted to evict me five times--I've prevailed five times. It seems that housing authority personnel cannot read what the federal regulations state.)
Beware! Housing Authorities are adversarial to persons with disabilities. That is a fact of life! Wanting to have an ace up my sleeve, during this fiasco Lila and I returned to obedience school in 1997 to go through AKC trial for the Good Canine Citizenship recognition. She passed it with no difficulty. That was some 4 1/2 years after being in obedience school. Dogs don't forget! Although I didn't need the ace up my sleeve, I'm certainly glad she has the recognition. Along with the GCC certificate came an invitation to register Lila as a Therapy Dog. I didn't register her as a Therapy Dog because she gives therapy right here at home. I allow her to be petted by other residents and she has become the sweetheart of the building. Allowing her to be petted does not interfere with what she does for me. In fact it enhances it even though people say hello to Lila before they say hello to me. LOL! You've probably heard that service dogs are not to be petted. That
determination is made by the owner of the dog. There are no official rules about service dogs. Below I've included the url for the Delta Society which provides information. Service dogs are protected under Title II of ADA. You do not have to present anything to anyone to prove you have a service dog.
You can take your service dog almost anywhere you need to go. When some human growls and says, "We don't allow dogs in here," smile and say firmly, "This is my service dog."

Obedience is essential in a service dog. I encourage people with narcolepsy to take their dogs to obedience school yourselves. It will get you off your duff, you will learn a lot, and you will meet new people in addition to having an obedient, loving sentient being to assist you when you need it.

What does Lila do for me as a person with narcolepsy? My original purpose in getting a dog was to get some exercise. Lila takes me for my walk four times a day whether or not I need it! She keeps me from being reclusive. She's a real social butterfly. She retrieves--actually locates--my shoes because I don't remember where I leave them. I've never trained her to locate my keys, but she could, if I would train her. She picks stuff off the floor for me. She is my watch dog and guardian. I don't hear someone knocking at my door when I'm napping. She barks loudly when someone is at my door and if I don't respond to her bark, she comes to get me. She assists me during cataplexy. Inadvertantly I taught her to pull on her leash when we were walking. I took advantage of the natural relationship between dogs and cats. (Lila likes cats, but cats don't understand that Lila wants to play.) She knows what a cat is and certainly recognizes the word. Whenever I saw a cat, I
drew Lila's attention to the cat and said "Cat!" Lila pulled on the leash. It dawned on me one day that she could pull tight when I was having cataplexy which would give me enough support to begin recovering. Now, when I'm having cataplexy, I simply utter "Cat!" as loud as I can and she pulls on the leash. She still looks for a cat. There is probably a better way of teaching a dog to pull on the leash, but "cat-aplexy" works for me. Other times, I have been able to lean on her while I recover. She holds still when I say "Stay." Just the presence of Lila protects me when I'm walking. No one is going to try any monkey business on a woman with a big black dog. Although my sleep paralysis and HH aren't nearly as severe now as they were earlier in my life, when I do have those spells, I can get validation of reality from Lila. If I awaken and see that she is quietly sleeping, I know that the event was a dream and not a real time occurence. For this aspect alone dogs
are a blessing especially for PWN who are younger and regularly experiencing HH.

Lila is sensitive beyond my expectations. I was watching television about one in the morning when I noticed that Lila made a sudden beeline for my door. I heard her sniffing and wondered if my friend Ellen was making a visit at an unusual hour. (She recognizes friends by their odors.) I had just arisen from my chair when Lila came to get me. I followed her to the door where she continued to sniff. Wondering what she was sniffing at, I opened the door and saw that half the hallway was filled with smoke which was drifted toward my side of the building. Immediately I called 911, but the line was busy. So I darted out the door to notify my neighbors. Fortunately, the fire was confined to the dumpster in the basement. The smoke was coming from the trash shoot. Some things a dog does naturally. Another time, I was in the dining room eating lunch and Lila was quietly laying down underneath the table when she suddenly sat up and started barking for no reason. Her behavior
was extremely unusual and I was embarrassed. Not half a minute later, a man seated two tables away had an insulin reaction. Lila was trying to tell me about it when she began to bark. As you know, dogs are sensitive to changes in biochemistry. The dog nose is the

Because of the very nature of narcolepsy, we tend to become reclusive and sedentary. Avoiding social situations and physical activity are the most usual ways of coping with cataplexy. Before anything else gets done, the nap comes first. Even with adequate medication, we have to make concerted efforts to get ordinary chores done. We spend so much energy earning our bread that we find ourselves loafing (bun pun intended!) after work. Post midnight raids on the refrigerator really "broaden one." Add to this mixture, computers and the internet where a lot of us exercise the intellect but not the bod, and up pops one good formula for an early exit--a WBO, the one time "without a body experience." If you don't use it, you loose it.

In times between periods of employment, I gained weight. That was my situation in eleven years ago. I knew I needed to get exercise, but couldn't motivate myself to do so. I needed something to get me off my duff. So I decided to get a dog because I needed companionship in my life and I knew that a dog would have to be walked and that would give me a certain amount of physical exercise. I thought I would be able to select the dog I wanted from a variety of pups, but when I arrived at the Human Society, all the cages were empty except for one which contained a wiggly lively friendly black chow/lab mix pup. This pup was the first arrival after the place had been disinfected due to a distemper outbreak. In September 1990 I adopted the chow/lab pup, eleven weeks old, and named her Lila Belle Da Dawg. Lila's tongue is pink with black spots; she is stocky--thick necked, short legged and shorter than pure bred black labs, and her ears are a longer floppy version of the
short pointed chow ear. She has expressive golden eyes, a trait of black labs.

Now, I knew that chows tend to be one-person dogs, but had I known that they are also willful and independent, I probably would have waited for other pups to arrive at the pound. Her willfulness and stocky build from her chow side, the pleasant, joyful, social disposition from her lab ancestors and innate intelligence make her an excellent choice as a Service Dog. However, from day one her willfulness repeatedly tested my patience during her puppyhood. She is the only dog I've had who did not respond to the command "come." She wanted to investigate everything, everywhere. She knew what "come" meant, but she just ignored me whenever she was off the leash. Additionally, she would bolt from the door almost faster than I could think. I can't recall how many times I've chased her through the neighborhood. You bet, every step I took, I was cussing. When on the leash, she had such strength that she came close to pulling my arm out of socket. Thinking that I needed to get
a harness, I went to the pet supply store and related my problem. The man said that I didn't need a harness. He put a vicious looking chain-like collar on her and walked her around the store. She yelped a couple of times, but she no longer pulled on the leash. He said, "Now, you have power steering!" I bought the prong collar. I had solved one problem, but her willfull disobedience continued to aggravate me until someone suggested that I take her to obedience school. At first, I balked at the idea. After all, I'd had other dogs who were well behaved and came when they were called. I considered my dilemma and decided to take her to obedience school.

The first level (beyond puppy kindergarten) consisted of ten weeks of training. Standard obedience school consists of seven levels of ten weeks per level. (Training is aimed toward accomplishing the "three legs" of the CD--AKC's "Campanion Dog" designation. All show dogs have completed the CD.) The trainer doesn't train the dog; the trainer instructs the owner/handler how to train the dog. Homework is essential. Lila loved going to school. It was an opportunity for her to socialize with other dogs. During the first three levels, our class--12 dogs and their owners--met once a week on a large, well lit parking lot in the back of a pharmacy. Classes were no longer dependent on weather when the trainer's new building was completed. No more "barking lot" for dog education! As I mentioned previously, Lila and I were in school for 70 weeks. Along with other class members, we repeated levels three and five. (Sometimes it's best to hold the kids back!) In December 1991
our class presented the first "Christmas Show." It consisted of an elaborate "drill" to demonstrate all that the dogs had learned. For example, we marched forward with our dogs, put them on a "downstay," circled around in back of 'em and walked over each dog. (I clearly remember having cataplexy but, I focused, am was able to continue walking and stepping over each dog.) Marching forward with the dogs, we formed a circle, left the dogs on a "stand stay" and wove in and out of the ring of dogs. I was so proud of Lila! She was obedient and did every thing correctly. When I saw the video tape of the show, I noticed that Lila was the only dog in the circle who was wagging her tale to the beat of the Christmas music used during the drill. I wish we could have continued to levels six and seven, but I didn't have the money. However, Lila and I have sufficient training so that she is an effective service dog. .

Lila didn't become a "service dog" until I moved into public housing. I live in a specially designated building which houses the disabled and elderly. When I brought her into the building, the housing authority tried to evict me. At that time I was vaguely aware that companion animals (dogs, cats, etc.) had been proved to contribute to the health and well being of their owners. When I did a bit of research, I learned that I could self certify Lila as a service animal. The housing authority refused to believe the regulations in the Code of Federal Regulations and my case was eventually adjudicated by HUD Secretary Andrew Cuomo, himself. He told the housing authority that I had the right to self certify my service dog and that the housing authority had better obey or lose its federal funding. (The housing authority has attempted to evict me five times--I've prevailed five times. It seems that housing authority personnel cannot read what the federal regulations state.)
Beware! Housing Authorities are adversarial to persons with disabilities. That is a fact of life! Wanting to have an ace up my sleeve, during this fiasco Lila and I returned to obedience school in 1997 to go through AKC trial for the Good Canine Citizenship recognition. She passed it with no difficulty. That was some 4 1/2 years after being in obedience school. Dogs don't forget! Although I didn't need the ace up my sleeve, I'm certainly glad she has the recognition. Along with the GCC certificate came an invitation to register Lila as a Therapy Dog. I didn't register her as a Therapy Dog because she gives therapy right here at home. I allow her to be petted by other residents and she has become the sweetheart of the building. Allowing her to be petted does not interfere with what she does for me. In fact it enhances it even though people say hello to Lila before they say hello to me. LOL! You've probably heard that service dogs are not to be petted. That
determination is made by the owner of the dog. There are no official rules about service dogs. Below I've included the url for the Delta Society which provides information. Service dogs are protected under Title II of ADA. You do not have to present anything to anyone to prove you have a service dog.
You can take your service dog almost anywhere you need to go. When some human growls and says, "We don't allow dogs in here," smile and say firmly, "This is my service dog."

Obedience is essential in a service dog. I encourage people with narcolepsy to take their dogs to obedience school yourselves. It will get you off your duff, you will learn a lot, and you will meet new people in addition to having an obedient, loving sentient being to assist you when you need it.

What does Lila do for me as a person with narcolepsy? My original purpose in getting a dog was to get some exercise. Lila takes me for my walk four times a day whether or not I need it! She keeps me from being reclusive. She's a real social butterfly. She retrieves--actually locates--my shoes because I don't remember where I leave them. I've never trained her to locate my keys, but she could, if I would train her. She picks stuff off the floor for me. She is my watch dog and guardian. I don't hear someone knocking at my door when I'm napping. She barks loudly when someone is at my door and if I don't respond to her bark, she comes to get me. She assists me during cataplexy. Inadvertantly I taught her to pull on her leash when we were walking. I took advantage of the natural relationship between dogs and cats. (Lila likes cats, but cats don't understand that Lila wants to play.) She knows what a cat is and certainly recognizes the word. Whenever I saw a cat, I
drew Lila's attention to the cat and said "Cat!" Lila pulled on the leash. It dawned on me one day that she could pull tight when I was having cataplexy which would give me enough support to begin recovering. Now, when I'm having cataplexy, I simply utter "Cat!" as loud as I can and she pulls on the leash. She still looks for a cat. There is probably a better way of teaching a dog to pull on the leash, but "cat-aplexy" works for me. Other times, I have been able to lean on her while I recover. She holds still when I say "Stay." Just the presence of Lila protects me when I'm walking. No one is going to try any monkey business on a woman with a big black dog. Although my sleep paralysis and HH aren't nearly as severe now as they were earlier in my life, when I do have those spells, I can get validation of reality from Lila. If I awaken and see that she is quietly sleeping, I know that the event was a dream and not a real time occurence. For this aspect alone dogs
are a blessing especially for PWN who are younger and regularly experiencing HH.

Lila is sensitive beyond my expectations. I was watching television about one in the morning when I noticed that Lila made a sudden beeline for my door. I heard her sniffing and wondered if my friend Ellen was making a visit at an unusual hour. (She recognizes friends by their odors.) I had just arisen from my chair when Lila came to get me. I followed her to the door where she continued to sniff. Wondering what she was sniffing at, I opened the door and saw that half the hallway was filled with smoke which was drifted toward my side of the building. Immediately I called 911, but the line was busy. So I darted out the door to notify my neighbors. Fortunately, the fire was confined to the dumpster in the basement. The smoke was coming from the trash shoot. Some things a dog does naturally. Another time, I was in the dining room eating lunch and Lila was quietly laying down underneath the table when she suddenly sat up and started barking for no reason. Her behavior
was extremely unusual and I was embarrassed. Not half a minute later, a man seated two tables away had an insulin reaction. Lila was trying to tell me about it when she began to bark. Both these incidents illustrate how sensitive dogs are to smell. Although they can pick up pitches in higher frequencies which humans do not hear, their sense of hearing isn't particularly keen, but their sense of smell is highly developed. Dogs who assist epileptics use their sense of smell to let the epileptic know when a seizure is coming on.

As I've mentioned above, I encourage persons with narcolepsy to train their own service dogs by taking the dog to obedience school. You can train your dog to be alert and to assist you for many aspects of narcolepsy--more than I trained Lila. That isn't the only way to get a dog trained to assist a narcoleptic. You can pay a professional trainer to train your dog for you. I'm glad you have the bucks to do that, but you will miss out on a lot of fun. Or you can lease a professionally trained service dog from a professional dog training outfit. Those dogs are very expensive and you will never own the dog. Those dogs usually retire at about age eight and are sent to live with the original foster parents where they lived as puppies before training began. If you use a professional trainer to train your dog or lease one, you will need to inform the trainer about the aspects of narcolepsy for which you want the dog trained. Dogs can be trained to break hypnagogic spells, to
keep you alert. and to assist you with cataplexy. Instead of you having to educate the trainer about narcolepsy, I believe you can do a much better job in training the dog to assist you once you take the dog through, at least, basic obedience training--the first three levels. If you have a dog who is already obedient, contact a professional trainer about training the dog to assist you. Many good books on all aspects of dog training are available.

Regarding breeds and sizes of dogs which are suitable as service dogs for persons with narcolepsy, it is probably a personal preference. The labrador, golden, black, and "chocolate" (Chesapeake Bay) make good service dogs because of their natural retrieving abilities. German Shepherds are well known for their service to the blind. Most service dogs are big dogs. Service dogs live in doors. If you get a puppy, you will have to constantly vigilant for at least six months but they learn a lot during that period of time. You will too. Plan on having your service dog neutered or spayed before they are five months old. Mixed breeds make good service dogs. Older dogs can and do respond to training. In this disposable society, people send dogs to the pound believing a good home will be found for their pet. They are wrong. In this county alone, over 2500 dogs are euthanized each year for the lack of adoption. Puppies are always adopted, but older dogs are put to
sleep. I personally do not understand how anyone could dispose of a family member.
I know of two other narcoleptics who use service dogs. One is Joan Bennett who lives in Ontario, Canada. She is a member of Sleep/Wake Disorders Canada and another is a man who lives in Kansas. He brought his dog to the Narcolepsy Network annual conference which was held last October in St. Louis. I had thought about taking Lila, but I don't have my own transportation. I couldn't handle my luggage and her stuff too. Otherwise, I wouldn't hesitate to take Lila. I don't like leaving her behind, but I can do without her for a few days. I depend on a cane to keep me on my feet. It isn't as much fun, but it does the job. I left Lila with a responsible person who knows Lila. When I returned I went to my friend's apartment to get Lila. She was so overjoyed to see me! I saw deep emotion in her eyes--something I had never observed in a dog before. In daylight I saw her eyes being reflective (as though it were dark). I knew she had missed me. Seeing her reflective eyes
almost brought tears to mine. I might have to try to handle my luggage along with her stuff so that she can go with me on the next trip I take.

I'll certainly be glad to assist anyone who wants to get a service dog. By the way, the leased service dogs are often paid for by grants from the local service organizations such as the Lions Clubs.

This is the url for the Delta Society a part of which is the National Service Dog Center: http://www.deltasociety.org

Nancy and Lila

Hi there I am going into chat now!
wind

EVERYONE IS INVITED..SHARE (IF YOU CAN) WHAT YOU DID TODAY FOR
ST.PATRICKS DAY...WE WOULD LIKE TO KNOW HOW EVERYONE CELEBRATES THIS
DAY.. COME ON LETS HAVE FUN!!!!!!!!
DRUNK OR NOT...LOLOLOLOL LETS GET THIS CLUB ROLLING!!!
THANKS
ANGELA RAY AND KAREN

I want to wish the entire group an awesome weekend!!! I'm not sure
how long this will be working so I wanted to drop in and post quick

I hope everyone has a fun day today. Dont over do it! :)
I'll be at home :( But be safe..
angela

Hello Everyone,
I am writing in regards to Lucid Dreams. I have N and experience
lucid dreams all the time. I have also had hypnagogic hallucinations and
automatic behavior, but they have decreased over the past few years.
I've had two sleep studies done at Stanford Sleep Clinic and both
times they asked me if I had lucid dreams. They told me it's common among
people with N, and not everyone with N have them, everyone is different.
None of my hypnagogic hallucinations or dreams have been nightmares.
Although when I was around 9 or 10 I dreamt that my bedroom was full
of snakes and when I woke up I still saw them. So, I went to my parents
room to try and sleep and the snakes followed me. Some of them even had
wings and were flying after me! Very scary.
I have also woken up from a dream and when I went back to sleep it
continued like movie, it's really cool. Especially if it's a good
one!
Hey, I was wondering if anyone here has ever tried Wellbutrin SR
(sorry if I misspelled it). It's mostly given for C . I'm curious because my
doctor wants me to try it. He doesn't know what else to do with me because
I'vetried everything else.
Have a Happy St. Patrick's Day!
MissGroggy

Hi Karen,
Thanks for sending me the invite. I didn't stay on to long last
night, fell asleep. When are the chats? Maybe I'll try and drop in
sometime.
I see some familiar faces and some new faces, hope to get to know all
of you.
Tammy

Maybe on a Friday night I could do something like that, Wind, but I
really didn't get much sleep last night, as you know, and tonight I
must sleep! Hope you all have a good chat though!
For the email settings:
Go to My Groups (at the top right of the page)
Then go to Edit My Groups (near the top left of that page)
Then you have options of getting immediate email, a daily digest,
special notices, or no email, from a drop-down menu for each of your
groups.
If you have several groups and want the same email settings for them
all, scroll down to the bottom of your groups and you should see an
option to 'set all of the above to:' whatever options you want.
Hope this helps.
Brig

Hi there! Come join me, I'm heading into the chat room now!
wind

I didn't think she'd managed to pass much urine, but the vet said she
had as her bladder was down to a normal size. Maybe there's a puddle
somewhere but I think I probably underestimated how much she'd passed.
So that's ok, but she has something called a torovirus, which is a
bit like a head cold in humans, it just makes you feel lousy but will
go away eventually by itself.
Can't do anything about the third eyelid appearing, but she sort of
has diarrhoea, and I have powder to put in her water bowl for that,
along with a few cans of chicken and rice catfood, to give her
digestive system a bit of a break. She doesn't drink much, so I
might put it in some kitty milk for her instead, and hope she doesn't
notice it!
She already picked up a lot by last night, she was playing and
jumping up on my lap, so I think the injections of antibiotic and
anti-inflammatory drugs helped too.
So, she's ok, I will certainly sleep well tonight, we don't need to
go back, unless Shelley deteriorates again, and I want to thank all
of you for thinking of us.......you're a wonderful bunch of people!
*Hugs from both me and Shelley*
Brig

Hi there!!! Come join me for chat tonight at 9pm eastern, 8pm
central, 7pm for you in Colorado, Ray! Brig, take a nap this
afternoon and you can make it...its only 2am for you in England!
Angel, What time zone are you in? You can drop in only if your
feeling better. :)
I promice to get some early in the day chats but so far my days off
haven't been days off, I have been getting called in. LOL. I really
don't mind but I get tired out sometimes and sure could use a day to
relax and get things in the house done.
{Any one not wanting this send in their email: Go to preferences and
change your settings not to receive this...I'm not exactaly sure how
to do this myself but our Founders Angella and Ray can tell you.}
Thanks, have a fantastic day!
wind

Moderator:
Can you please delete this person from the list? The last thing we need here
is SPAM!
CV

No need to apologise Angela, we all get ill from time to time. From
what I've seen, this is a club where we all lead together, sometimes
one individual needs to take a back seat and let others take the
lead - I know there have been times when you've supported the others.
I haven't been to the doctors today but I did take my cat to the vet,
she's got to go back tomorrow, because she has a full bladder and
can't pee. That wasn't actually why I took her, but I'm quite
worried, about some of the things the vet said could be wrong with
her. She's only 9 and I've had her since she was a few weeks old.
I didn't get to chat last night either so I can't tell you what
happened there! I'm sure Karen will be able to tell you though!
Take care of yourself Angela, hope the medicine works fast.
Brig

Im such a bad leader.. But I'm not feeling well..My ears have water
behind them and they hurt like heck!! Just went to the Dr's today and
got medicine for it.. I Cant stay up passed a certain time with this
my head spins!! Again I'm so sorry for missing it.
If I was to chat I wouldnt have been any fun. :(
Hopefully I would be able to do the next one!
Was there a big turn out?? Hopefully it was!
Thanks for running the chat Karen. Im glad your loving your job!! Not
many people can say that!! Your one of the lucky ones!
Take Care going to rest again.
Talk to you all later.. Angela

Hey everyone, I have been getting a steady supply of samples of Provigil from my sleep doc. It allows me to supplement my 'script with an extra 1 or 200 mg on bad sleepy days. Don't worry the doc has OK'd self dosing. The samples keep me from having to refill every 3 weeks, which is great because my insurance only pays for one refill a month. Also since Provigil is still not prescribed in large numbers at his office, (i'm the only one) he has cases of samples available. So don't be afraid to ASK if your doc has any samples sitting around getting stale.

-Andy

This is a list of my recorded C triggers, see if any of yours concur with mine; (% of total collapse)

1. I just hooked a fish (70% collapse)
2. I just made a great play in softball (60%)
3a. I just made a great catch in football (35%)
3b. I just made a three pointer (
4. Watching Theres Something about Mary (first known C happened during this) (80%)
5. I just dropped my keys, my brother bends over to pick them up for me and I fart in his face. (100%)

Kinda like the mastercard commercials.

Dear Clynch,
I definitely have narcolepsy. I have had all the tests etc
and until recently have been on the usual medication for it. I wonder
if you are correct in saying that you'd be hard pressed in finding a
connection between lucid dreaming and narcoleptics. Maybe we should
ask everyone out there to give their opinion. I have been reading
about and trying to do such things since and early age, so perhaps I
have an early start. Nevertheless it is possible to learn how to
lucid dream (there are books out there on the subject LaBerge I think
has a book called 'Lucid Dreaming') and I think that narcoleptics are
the perfect people who would benefit by learning such techniques.
Think of the incredible vividness most narcoleptics describe their
dreams as being like, and imagine how great it would be to actually
control and be awake within such a vivid realm. Narcoleptics
typically go straight into REM sleep and it goes on virtually all
night - better than the average person who may have a single 'lucid
dream' early in the morning. I have got to the stage where the
narcoleptic "attack" comes on me while I meditate and am sitting
cross legged, taking me fully conscious into visions and "lucid
dreams". This is where I think we need to talk about whether what
narcoleptics experience is the typical "dream" of a normal person. I
feel that it is more akin when experienced at a lucid level to astral
projection or something maybe in between the two. In my posting OOBE
was a typo. I meant OBE. ASP refers to some jargon term I read on the
narcolepsy site which has to do with awareness during sleep
paralysis. What I meant was that in order to successfully induce an
OBE (out of body experience) the person has to get themselves into a
state akin to sleep paralysis. It is only when in this state that a
person can disengage from the physical. It is thus a prerequisite.
Robert Monroe (author of 'Journeys Out of the Body' and 'Far
Journeys') calls it the Mind Awake/Body Asleep phase, and it is the
first thing he trains people to do in his program. A lot of people
out there try really hard to bring about this state of consiousness.
Narcoleptics who are interested, instead of reacting with fear and
trying to break out of such an experience, could instead try
exploring what they can do within it. One suggestion would be what I
think Monroe calls the roll-out method - this being where you roll
over like a log in water (within your astral body - not physical)Then
you can roll out and exit the physical to find yourself standing
either next to your body or in my experiences in a different dimesion
altogether. When I first started experimenting with such spaces, I
would lift my astral hands out of the physical and feel my astral
torso, face, and body - my physical body being under the sffects of
sleep paralysis lying under the covers).This is a great technique
actually, because it grounds your awareness within the senses of the
astral body, particularly the sense of touch. It involves at first a
bit of visualization to get the knack of switching awareness to the
non-physical standpoint, but once you can do it it becomes pretty
easy then to do a lot more. I would be interested to hear if people
could try this out with successful results. Does anyone else out
there support anything that I am saying, or am I some kind of freak?
Best Wishes and happy 'lucid dreaming'. Chif.

Looks like I'm too late. It's 9:20 central time. :(
I sure do miss chatting the way we use to in wheelin on.
Huggs to all.
Here's the updated web site for Chris, bigdoggizz.
http://www.geocities.com/clehman_1/index.html
Nancy

Hi Chifley,
Your email really struck a chord with me, these are areas I too would dearly
love to discuss, but it seems the list hasn't been a place where I feel free
to wax philosophical. I am very hard pressed for time at the moment, and
this email is uncharacteristically short for me :) but i just had to send
you a quick note to let you know how much I would love to discuss all of
this with you in greater detail. Oh and I love Buffy too :) and yes Tuesday
nights are routinely inclusive of vampire themes. Ok I will sign off now,
but I hope to speak with you soon.
Ceri
on a mild autumn evening
Fremantle, Western Australia.

I'm in the chatroom now come on in! :)
wind

Can anyone please tell me why 95% of these posts are about the 'improper' content of other people's posts? I am getting sick of seeing a dozen posts about the previous dozen posts about the content of someones APNEA post. There was a time 5 or 6 months ago when a dozen posts on the N group would brighten my day. But now I just delete because I know that 95% of them are whiney garbage. (Unless its Nancy of course)

I'll stick it out a couple of weeks to see if people here want to communicate about Narcolepsy, or if they want to whine about the content of someones post. If you see a post which does not agree with your belief of what the content of this list should be then delete it. Criminy you'd think everyone in here is forced to read these posts, If I see a post on exactly what I'm writing about right now, I DELETE IT, which is what I will do when I recieve my letter, And hopefully all of you will delete it too, So I don't have to delete any responses to this (already deleted) post I have written for the sole purpose of everyone to delete it.

DELETE THIS!

I'm Out!

-Andy

Hello everyone,

I've read all the email but haven't had much opportunity to respond to requests and answers regrading service dogs for persons with narcolepsy. I will respond in a couple of days. I'm delighted you asked. I have lots of info I'll share with you.

I'm taking some intensive training in a three day "school" to become a lobbyist for persons with disabilities in Jefferson City, Missouri's capitol. Yesterday was particularly exhausting for this narcoleptic. I managed to stay awake because my feet hurt from all the walking and activity. My brain is saturated and now I have to find some thing decent to wear for today's sessions. I'll get back to you all in a day or so.

Nancy

Sis, did you get that 'invite' to Shay's alternative group that I

Hi All,

Hi there Everyone!!! I hope you're having a fantastic morning!!! The
last few days have been kind of crazy for me...so I'm ready to sit
back relax and chat with EVERYONE....LOL ! So please drop in a
little while in the chat room and say "Hi!" to me. I'll be in at 9pm
Eastern Time...and I plan to stay there 2 hours at least...and if we
get yaking might be there longer LOL!
Yikes....winter showed up in Michigan finally...LOL...I'll have the
heater on for ya!
wind

Would love to join you in chat but 2am is a bit late for me!
Brig

Hi there and welcome to Angels d_akira, arbiter_de, Dingleberry32, &
brc5909 !!! Feel free to check out the messages, photos, and chat
with other members!! And post often on the message board, about
thoughts, questions, maybe a little about yourself....kick off your
shoes, pull up a chair and relax!
Angel, Ray & wind

I agree, Brig, and thank you for letting us know. May I send my best
wishes to all the UK moms also? Have a great day, mothers. :)
Ray

Why do you have to start the testing all over again? Ive only just been tested and I know it would suck to have to do it again. Why cant you have caffeine for two weeks? They only told me not to have caffeine the day before and the day of the test. I wonder if I should have gone without for 2 weeks.

I feel for you. I will keep you in my prayers!

Clynch

I'd like to wish all Mothers in the UK a Happy Mothers Day tomorrow
(Sunday).
I realise it's in May for you folks across the pond, but it's nice to
recognise special days in different countries and cultures, don't you
think?
Brig

Nancy and Marilyn,

What a great idea! Companion animals are such a help, especially to people who have some disability or other. As we well know, at times N can be disabling. IMHO it is not a good idea for PWN to be alone for long periods of time. I am able to work, but I fear that there may come a time when I cannot. One of my concerns is that if the C gets worse I might be alone at home and collapse and seriously hurt myself. That thought frightens me. A companion animal would be a great help in that situation, if for no other reason than the animal would be there to keep me company until I was able to get to a phone.

I like that your dog helps wake you. That is just so neat!

Marilyn,

I can look on the internet, but dont know if Ill have time. I would suggest that you simply search on companion animals and Im sure you will find lots of info.

Clynch

Go to the home page of this group. Look at the title of this group. This is a group about Narcolepsy. Nobody is being pedantic or mean in asking that we keep the focus of this group on its stated purpose. People who have N need a place to go to talk about N. When you signed up for this list, it was made clear that this list is for N. Not for Apnea. Not for other sleep disorders. While I understand that occasionally a person needs to mention other sleep disorders so he/she can get help, and I have no problem with that at all, we do need to keep this boards focus on N. That is the purpose of this board. I didnt sign up to learn how to adjust my CPAP machine. If someone says I need help adjusting my CPAP that person should be told, in _private_ email, where to go to find help with CPAP. Most of us here do not have CPAP and never will, so we arent experts and we will likely never need to know that. That information will help only one person and should be given privately. Many of
us dont have a lot of time in the day and cant afford to wade through a bunch of off-topic emails in order to ferret out information that is useful from among the non-N related stuff posted.

Those are the reasons to keep this group focused on the topic of N.

Yes, sometimes a person needs help. But I know that every single day I need help and I get a lot of help from this list when it stays focused on its stated topic. Sufferers of Apnea, those using CPAP, etc all have topic boards which focus on their problem and, as I stated before, I promise never to go on those boards and talk about N. I wasnt being facetious. I would not go to another topical board and start talking about N for the same reasons I mentioned above.

If someone needs help with a non-N related topic, I will be glad to see them post and ask. But answers to those posts should always be done privately, as they clutter up this fine board and take the focus off of N.

These topical boards started on local BBSs. Ive been hanging around BBSs and the like since the early 1980s and I can tell you that a group only remains successful and helpful if the group is kept to its specific topic.

For what its worth, I havent seen any situation here where someone asked for help and got judged and Im not sure what you mean when you say that.

You make the nonsensical statement In the giving of another web site or group was only for the other person to get help to fix the problem. I assume you mean that the posting of a website or link was only to help the other person get help. I agree 100%. Nothing wrong with that. Would you please tell me why its wrong for me to ask that that information be given to that person in _private_ email rather than posted on the board? I suspect youll ignore this very reasonable question, and thats OK, too.

This group wants to help people, and I think I speak for the group when I say that we will help people. Im only asking that non-topical threads be taken to private email.

CV

Hi Nancy and all,
Nancy I just had to respond to your analogy of of man's/womens's best
friend as being a dog person in a fur suit. This seems so true. Who else
loves us no matter how we look or whether we can work or not or even if we
have N!
Would you explain some of what your dog was trained to do in obedience
school? I'm asking because even though I'm married, I could really use a
companion in the daytime with all of the serious illness I deal with. I could
never train a dog myself as I wouldn't know where to begin. Also, what breed
of dogs are best for this?
Until I read your post, it had never occured to me the value of having a
dog that was trained to help me. I love animals and feel this could possibly
be a good solution for me. I would appreciate any information you could send
me. Thanks and take care. Marilyn :)

Hi, Angel!
I'm sure Karen would agree with your pic change... it's fun to come
in here not knowing what picture will be up. And as long as it isn't
the Old Coot in the scout uniform, they are sure not going to scare
anyone off! LOL
Ray

You have to unsubscribe yourself. The moderator of this list needs to set it
so that sub and unsub commands are posted on each email.
Anyway, long and short of it is this:

The only way I knowe of is by going in the member list, the little
yellow faces works now.....I never seen it work before. It works now,
but it was nicer to have the list of people online showing I think
too.
windy wind

Can anyone tell me how to get off this rude and insulting list I have tried
several times sending a request!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks Nancy for the compliment. My website is at: Southpawcats.....
http://www.angelfire.com/me2/catsNglass/
on the index page is a link to my photo point albums where I more
photos of my artwork in glass beads, marbles, clay & quilts.
purrs,
Kat

Goodmorning alllw33 Welcome to the club!!! Go ahead and post a
little about yourself if you like :) We hope you have a terrifica
time here!!!
Anbgela, Ray & wind

Hiya Kat and fellow narcoleptics,
Your technique of focusing on the air flowing over your upper lip to break the spell of sleep paralysis is a new one to me. However, I have no doubt that it does work.

Because I lived alone when my N was diagnosed, I had no one but myself to depend on. I learned to break the spell of sleep paralysis using the same thing I used to earn my living--my voice. (My profession is teaching vocal and instrumental music K-12.) I taught myself to moan. Moaning makes the vocal cords vibrate. The movement of little muscles stimulates bigger muscles. Sometimes I just thought I was moaning, but I kept concentrating and eventually, my moan helped break the spell and soon I was able to "jerk" myself up to a sitting position. When I married, I taught Valencia to be alert for sounds of moaning. I asked him to take hold of my hands and pull me to a sitting position and give me a bit of bodily support momentarily whenever he heard me moaning. Having another person help break the spell of sleep paralysis was certainly a blessing because it shortened the length of time I had to concentrate and to moan while enduring the fright. Since Valencia and I
parted ways, I've had to rely on myself. again.

Years later, I learned of another technique to break the spell. Concentrate on moving the eyes! Remember that the eyeballs are NOT paralyzed during sleep paralysis. REM sleep occurs during sleep paralysis. The eyes move back and forth rapidly following the action of dreams which occur during Rapid Eye Movement sleep. When concentrating on moving the eyes, try to move them up and down instead of side to side. (Deliberate side to side movement works too but is slower than up and down movements.) Take advantage of the only voluntary muscles which are not paralyzed and make them work for you to snap you out of the spells of sleep paralysis.
Yes, Kat, I agree totally with you that sleep paralysis can be broken by outside stimulus. Many times before I could begin to moan, my German Shepherd, Denver, carefully put her nose under mine. I could feel the soft hair on her nose which quickly awakened me. For years I thought that I breathed so quietly during my naps that Denver was checking to see if I was breathing. However, since learning that dogs are sensitive to our needs, I wonder if she wasn't tuned into my dilemma of the spell of SP. Having a dog is a wonderful blessing for persons with narcolepsy. When we can't determine if we were dreaming or if an event occured in real time, checking the dog gives us validation of our environment. If the dog is quiet, a person can be assured there are no intruders in the house. Also, if there was something unusual going on, the dog barks which awakens and alerts the person. My dog, Lila Belle, is my service dog and takes me for my walk four times a day whether or not
I need it. She thinks I'm a real couch potato and reminds me of it frequently. She always wants to go--anytime, anywhere. Yeah, my hound hounds me when I'm seated at the computer. She's insistent and keeps nosing me with her cold wet nose. She keeps me on my feet when I have cataplexy by pulling on the lead. I raised her from a pup of eleven weeks. We have seventy weeks of obedience school training. This dog loved school and would go back if she could. She's now 10 1/2 years old and is still going strong. She's developed a bit of arthritis, but she's still hounding her Ma. Would you believe that she sometimes gives me a sigh of disgust when I head to the bed for a nap! She's a fur person in a dog suit!

Although my EDS and C are about the same as when I was young, my other symptoms--what I call "the bedroom symptoms" have become much milder.

Thanks for the post and excellent suggestions, Kat. People sharing their experiences and knowledge is what this list is all about.
Nancy Valencia
PS. You all take a look at the glass ball at the end of Kat's post. Kat is the artist. She is a first class glass artisan. We narcs are truly a talented and creative lot. Kat, you should post your website for all to see your other creations in glass.

Thanks Angel!!!! Your sweet!! I'm collecting gif files for you and
I'll start sending them to you soon......I forgot when I put the
photo on that Ray was supposed to do the colors...Sorry about that
Ray!!! I'll behave from now on ok? I'm a beginner co-founder....Hey
I never got a co-founder handbook....how do I know the rules....and
ediquit....????...gosh I hope being a good speller isn't part of the
job description ....LOL.....yikes it will be the shortest co-
foundership in history if that is the case (giggle).
I had an awesome day at work today!!! Gosh it is so cool working at a
job I love getting up in the morning for....I never expected to have
one like that....LOL....Its ok, Angel your forgiven for missing
chat...I probably would too if I had a sweetie to cuddle :)
I hope everyone has an awesome night!!!
wind

I cant see which members are online!! Remember the old setup?? You
seen members of the club right ontop of the club page!! Now you don't!
Is there a way to see our members??? Let me know please.
Thanks Angela

Hi all just dropped in to checkup on club..couldnt get in to save my
life yesterday!! They were working on something. But Karen yes you
can post a message to bring more people in club, thanks for asking!
Sorry I couldnt make the chat on Sat. I wasnt home.Was away with my
sweetie!! (chuckle :) ) would have loved to been there! Things are
looking good in here so far. I know we lost some members,but also got
new ones too!! Welcome All to our little club..at times it gets quite
then you cant shut people up! lolololol just teasing. Lots of sweet
and friendly people in here. So if there is anything you need or just
want to talk, drop us a line! We will try our darnest to help you.
OK? Take Care to you all.. Oh by the way Love the pic you posted
Karen thanks a bunch for that! Wish we were all going thru our riches
like that!! lololololol
Bye for now
Angela a.k.a. wheelsgrl2

Dear All,
many years ago I read about some research that was going to create this
machine that would set off an alarm when you had sleep paralysis,
because an outside stimulus {other than yourself} would bring you out of
sleep paralysis.
For example, if someone would touch you or start talking to you.
However that is where the problem lies.......IF someone is in the same
bed &/or room how do you let them know you need this?? Basically you
can't.
This gave me 2 ideas that I have used for years and have helped me to
decrease the SP and to help bring myself out quicker when it does
happen.
1. I listen to a radio on very low by my bedside. I know this helps to
decrease, because when the power has gone off to my house or the radio
station I almost always wake up with SP.
2. When I do have it, and I am able to realize this is what is going on,
I focus on feeling the air of my breathing on my upper lip.... thus my
"outside stimulus" it really does work! It is the same as if another
person would touch you on your arm. You do have control of your
breathing / focus of feeling your breathe.
Another fact: In my 20's I had SP & HH very severe! I almost HATED to
go to sleep many nights, as I have gotten older, some is possible
learning to manage the symptoms, some maybe finally a medication that
helps, but also I read many years ago that when each symptom develops it
usually is more severe at that time and levels off as you get older. I
think this is true, and I have been told I have a severe case of N.
Just my experience and opinions :-)
purrs,
Kat

Hi there seatingmann, and mncflores!!!! Please don't be afraid to
post a little about yourself here on the messaage board!! We love
chatting with people from all over! I hope you have a terific day!
wind

Not me - I'm still getting just around enough space for 6 lines of
text in my chat window, with no way of expanding it! Anyone else