Another cool week here.

2008-03-31 16:10:48

Hi everyone, hate to say I was right but the buffalo got hit one
night and totaled a pick
up truck and broke its leg. They said that they butchered the buffalo
after they had to put it down. Luckily the guy driving the truck
wasn't badly hurt!
Went up and watched the parade Sat. morning. It's hard to believe how
much candy gets thrown out during these events. Where was all of that
when I was little? There were quite a few entries this year. They
shut down Main Street and parade both ways at this one. I watched the
garden tractor pulls that afternoon and saw the entertainment that
night. With all of the class reunions going on the annual Lions pork
chop supper attendance was low but boy were they good. I didn't go to
any of the other entertainment but they say it was all right. We did
go up Sat. morning for breakfast and was sorry for that because the
pancakes were cold and hard around the edges. My second disappointing
breakfast out 2 weeks running.
We still have quite a few turtledoves, finches and rabbits coming
around to feed. There are also a couple of quail families that come
up. There are over 10 young ones in each bunch. I sure never thought
I'd see much wildlife around here again. Our neighbor putting the
ground across from us into a tree program sure is helping with that.
But with that also comes with a big mess of unwanted weeds since he
doesn't mow or spray any of it. The good with the bad I guess.
I hope that you all have a great week! Take care.
Bill

Another question for Spinner

2008-03-31 15:52:27

Do you ever not take Ritalin to give your body a
break? Has it always worked for you? Ok, that was two
questions.
Thanks!
Sandi R.

Re: Top of the world

2008-03-31 08:18:33

Hey Karen, that is some picture you got there! Sure makes me remember
my time out there with my ex-inlaws. The last time I was there I took
a week off from work and went by myself and had a good time. They
just moved into the mountains and I climbed to the top of the
mountain where thery lived and it was a beautiful site to see. They
said that there were mountain lions around so you had to keep an eye
out and keep you pets secured. I took a load of firewood out to them
that was cut, split and seasoned so they did good also.
We are having unseasonable temps again here but it is supposed to
warm back up into the 90's next week, all week. The yards are drying
up again. The gut who rents our pasture has opened up the gates and I
get to see the cattle out a grazing tonight.
We have been eating a lot of corn on the cob lately. Boy does it
taste good. My uncle how just lives about a block away supplies us
with fresh garden produce. We froze 31 pints of corn last weekend.
The only thing that I will eat out of the garden is potatoes, carrots
and sweet corn. I take after my mom when it comes to eating things.
Very picky.
Have any of you heard about the musical, The City of Joesph, in
Nauvoo Illinois? This is going to be its last year of production. We
have went several times and it is a beautiful production to watch. It
takes place outside and has an all volunteer cast of over 200 people.
Any one have big plans for the weekend? Next weekend will be a big
one for me. First off is the Old Threshers in Hamilton, IL. and a big
car show in LaHarpe, IL., The Fred Gibb Car Show who was responsible
for Z 28 camaros becoming so popular. It should be a good one. The
week after that is the towns annual celebration
I hope you have a great weekend! Take care.
Bill

Cold here again.

2008-03-31 07:40:26

Hi everyone,we might break the record low here tonight. I don't think
that it got up to 70 today. Our annual towns celebration starts
tonight and it will be chilly sitting out and watching the local
talent show. I will definately be wearing a sweatshirt tonight. Boy I
hate the cool weather anymore.
You will never believe what is roaming around our neighborhood. There
is a buffalo farm a couple of mile away and one got out and is making
a home for it self down a waterway in a corn field. We heard about it
at church sunday and yesterday on the way home we saw it lying down a
ways from the road. They said that it has been seen on the road. That
would be a site going down the road at night and dangerous since its
black. I remember almost hitting some cows in our car when I was very
little on the highway late at night.
Last weekend LaHarpe had its annual Fred Gibb car show with about 500
cars showing up. They have allowed them to do some big burn outs
after the show and this year they had one get out of control and
crash into a yard along main street. Guess it tore it up pretty bad.
I have never stayed to watch them do that.
I hope that your week goes well. Take care!
Bill

Top of the world

2008-03-31 01:46:20

Here is a photo that is like the top of the world....Finally, I feel
like I snuck a peek to see whats on the "other side" of the
mountain...Ever since I can remember I wanted to do that...
Karen

RE: [narcolepsy] Jerome

2008-03-30 14:25:38

Hi Sandi,
I've read about developing med tolerance
in the two books and several articles I've
gone through recently. My doctor also
mentioned that concern.
I'm no expert on this. The literature
and doctors are saying that it can happen,
although I do not know how commonly.
At this time I have appointments with
my neurologist every 6 months. He talks
to me about taking "drug holidays" on the
weekends or on vacation, but I don't think
that is a good strategy for me. I still
need to be functional on those days, so
I've been taking Provigil every day.
Jerome

Good response to Ritalin for...

2008-03-30 10:46:44

Good response to Ritalin for ADHD adult (not narcolepsy).
For your info, there have been a number of posts at the following
ADHD site by a woman who appears to respond quite well to the ADHD
medicine Ritalin. You might wish to take at look at some of her
informative comments. Her name is: Anja van Weeszenberg. She's
from Europe.
Here's the site where the comments are:

Unseasonably cool temps again.

2008-03-30 05:38:33

Hi everyone, here it is the end of July and we have had the windows
closed because it's to cool to have them open. The normal temp is
close to 90 and it was in te 70's over the weekend. We froze 31 pints
of corn and still had the windows closed in the house without having
the air conditioner on which is great. Dad had a guy come and cut
lumber out of some logs that he cut out of our timber over last
winter and this spring. Now he has to let it dry for a year or so
before he can work with it. He's got cherry, walnut, a couple
different oaks, and a couple of others that I can't think of now. My
uncle helped and it about wore them both out as there not used to
being on their feet all day working like they did. He will have
enough lumber to keep him busy for a year or two.
I got out and wheeled around the house the other day and I couldn't
believe how bad the moles have been in the yard. There were tunnels
everywhere. We have been getting little showers every now and then
which keeps the bugs close to the surface which the moles hunt for.
Dad is going to start setting traps for them. They are sometimes hard
to get.
I hope you all had a nice weekend and have a great week. Take care!
Bill

Draught

2008-03-29 22:54:28

I'm Still new in Colorado, so the draught doesn't make much sense to
me at all. Last year it was all brown and dry, and I could see the
damage by the draught...this year its still green and prety looking
all around the parts of the state I have been traveling to at least,
and they are still talking about being in a draught on the news.
In Wisconsin where I grew up the draught was over soon as it rained,
kinda like on tv shows where they show the draught out west and then
everyone rejoices because it rains. I had some unrealistic Ideas, and
never researched what it is like out here, so I'm learning everyday.
I've heard it called a semi arid state too. So maybe its not a
draught right now but the potential is still there so they want people
to continue to conserve water, maybe?
I'm trying to get as much mountain traveling done before the snow
flies out here....Take care
Karen

Jerome

2008-03-29 10:43:26

Thanks for the info Jerome.
Is it common to develope a tolerance for the different
meds to treat N?

Re: How was your weekend?

2008-03-29 04:03:53

Hi, Bill,
Don't know if we're in a 100-year drought session, but it IS very
dry. We get some nice storms that drop lots of moisture, but then it
warms right up again and dryness returns. Had a good storm yesterday
so if today and tomorrow can stay in the 80's, maybe some of it will
soak in.
What DID happen to the guys in those pit crews that had the fight? I
saw the story of the incident when it happened, but I've heard
nothing since then.
How's the van riding now? Smoother?
Ray

How was your weekend?

2008-03-29 00:31:28

Hi all, I had a decent weekend. Watched a lot of NASCAR as they are
not running next weekend. They were in Chicago and had to deal with
some rain. During qualifying they had a strong wind come up and blew
a air inflated orange with a straw sticking out the top onto the
track and it blew quite a ways down the track before it got caught in
the fence. One of those once in a lifetime deals. Had a pit crew
fight during the Nextel race. Be interesting to see what fines and
anything else happens with that.
I had to get a new set of tires for my van today. The ones I had were
out of round and my van vibrated going down smooth roads which we
don't have to many of but enough to make it annoying. I think he
belts got twisted or something like that. I got a six ply tire hoping
that will keep me from having so much trouble with them. The weight
of my van since its adapted for me we think is the problem for that.
They cost $95 a piece so I really hope it fixes the problem.
We still have a lot of finches, turtle doves, quail and of course
sparrows feeding daily. The humming birds have moved on somewhere.
Haven't seen one of those for quite a while. The deer still come up
but later at night so I don't get to see them.
We are having some warm temps now. Up in the 90's today and tomorrow,
then cool down some but get back in the 90's for next weekend. We
have been getting some rain. Enough to get us by but still could use
some more. There has been big storms around us so I'm glad that we
missed the bad ones. There is always something to complain about.
That would have been neat driving home and seeing all those
fireworks. Kind of heaven sent I think. Glad you got to enjoy them. A
guy in the tire shop said that Colorado is like in a 100 year
drought. Said things are really dry. I miss being able to go out
there and spending some time. It is beautiful country. I hope your
guard shack is air conditioned!
I hope everyone has a great week! Take care.
Bill

Quotes For The Day

2008-03-28 21:34:41

Sometimes, the only thing standing in your way is your own shadow.
____
Ask Yourself "What if?" and prety soon you'll be answering, "Why not?"
Both of these quotes are labeled -Anonymous

Words Of Wisdom

2008-03-28 10:48:23

Energy: Energy is our capacity for action, powered by passion.

Justices Narrow Breadth of Law on Disabilities

2008-03-28 09:31:06

January 9, 2002
NATIONAL
Justices Narrow Breadth of Law on Disabilities
By LINDA GREENHOUSE
WASHINGTON, Jan. 8 The Supreme Court ruled today that to qualify as
disabled, and therefore to be protected by the Americans With
Disabilities Act, a person must have substantial limitations on
abilities that are "central to daily life," and not only to life in the
workplace.
The unanimous ruling was the latest and one of the most important in a
series of Supreme Court decisions that have interpreted and, for the
most part, narrowed the broad terms of the 1990 law, which obligates
employers to make reasonable accommodations for disabled workers.
As a result, plaintiffs are finding it much more difficult than the
law's advocates expected to win their cases, or even to get into court
in the first place under increasingly stringent definitions of
disability.
Employers viewed the opinion today, by Justice Sandra Day O'Connor, as a
major victory. It overturned a lower federal court's finding that an
assembly line worker at a Toyota plant who suffered from carpal tunnel
syndrome, an ailment involving muscle and tendon injuries from highly
repetitive activities, was disabled in the "major life activity of
performing manual tasks."
The justices' ruling was not conclusive, leaving open the possibility
that the woman, Ella Williams, who worked for six years at the Toyota
plant in Georgetown, Ky., might still win her case when it goes back to
the United States Court of Appeals for the Sixth Circuit, in Cincinnati.
The appeals court had granted summary judgment to Mrs. Williams,
finding her disabled as a matter of law based on her inability to meet
the demands of her assembly line job and of other jobs that require
gripping tools and working with arms elevated and outstretched.
That was too narrow a focus on which to base a finding of disability,
Justice O'Connor said, because it ignored the question of whether the
limitations affected Mrs. Williams's daily life outside the factory.
"The central inquiry must be whether the claimant is unable to perform
the variety of tasks central to most people's daily lives," not just
those of a particular job, Justice O'Connor said, adding that "household
chores, bathing and brushing one's teeth are among the types of manual
tasks of central importance to people's daily lives" and should have
been part of that inquiry.
The repetitive work that caused Mrs. Williams's problem "is not an
important part of most people's daily lives," Justice O'Connor said.
Mrs. Williams had testified that while she needed help in dressing and
had given up such activities as sweeping and dancing, she could still
take care of her personal hygiene, cooking and some housework and
gardening. But the appeals court disregarded all the non-workplace
evidence. Without an evaluation of the full effect of Mrs. Williams's
impairment, summary judgment in her favor was inappropriate, Justice
O'Connor said.
"These changes in her life did not amount to such severe restrictions in
the activities that are of central importance to most people's daily
lives that they establish a manual-task disability as a matter of law,"
the opinion said.
While Mrs. Williams is not likely to prevail back in the lower court,
the decision could be helpful to plaintiffs whose limitations have more
effect outside the workplace than within it, said Prof. Chai Feldblum of
the Georgetown University Law Center.
"If brushing your teeth qualifies as an essential activity, then so do
other things like taking out the garbage" or lifting things around the
house, Professor Feldblum, a leading authority on the statute, said in
an interview.
Nonetheless, she said, the court's approach today is likely to pose new
problems for some plaintiffs, many of whom have already been shut out of
court by the Supreme Court's earlier rulings and by lower courts'
responses to those rulings.
In three decisions in 1999, the Supreme Court considered whether people
qualified as disabled if their conditions could be corrected or
controlled by medication or devices like eyeglasses. Corrective measures
must be taken into account in assessing disability, the court ruled.
Professor Feldblum said lower courts had interpreted the 1999 decisions
to hold that people with diabetes, epilepsy, prosthetic limbs and even
schizophrenia were not disabled.
As in 1999, the court today, in Toyota Motor Manufacturing Inc. v.
Williams, No. 00-1089, stressed a need for an individual, case-by-case
determination of disability rather than a conclusion based on a medical
diagnosis.
The adoption of the Americans With Disabilities Act in 1990 followed a
decade of debate over how discrimination on the basis of disability
should be treated legally. In enacting what many people regard as the
most important civil rights law of the last 25 years, Congress wrote in
very broad and general language, leaving much uncertainty about how the
law would be carried out in the real world of the workplace. In the
continuing legal battle, the courts are just now beginning to give
precision and content to the open-ended phrases of the statute.
The law defines disability as "a physical or mental impairment that
substantially limits one or more of the major life activities."
Disability can also be established by having "a record of such an
impairment" or "being regarded as having such an impairment,"
definitions that were not at issue in this case.
Justice O'Connor said the law's essential definitional terms
"substantially limits" and "major life activities" "need to be
interpreted strictly to create a demanding standard for qualifying as
disabled."
Congress made that clear, she said, by its reference in the law's
preamble to 43 million Americans who "have one or more physical or
mental disabilities." With 100 million people wearing corrective lenses,
she said, Congress obviously did not mean to include everyone with some
type of limitation.
The decision put off until another day answering the question of whether
"working" can be considered a "major life activity" under the statute.
Earlier Supreme Court decisions have suggested that it cannot be, but
Justice O'Connor said, "We need not decide this difficult question
today."
Although the court limited its discussion to the activity of "performing
manual tasks," disability law specialists agreed that the decision
extended beyond that category to create a kind of template for assessing
limitations on other "major life activities" as well.
"The message is clear that claims of disability status will be looked at
very closely," said Peter Susser, a lawyer with the firm of Littler
Mendelson who filed a brief for the National Association of
Manufacturers.
Stephen Bokat, executive vice president of the National Chamber
Litigation Center, the legal arm of the United States Chamber of
Commerce, called the decision a major victory for employers.
"The court understood," Mr. Bokat said, "that the A.D.A. was not meant
to create a loophole for people with routine limitations or minor
injuries, but was intended for people with significant limitations."
After Mrs. Williams, who is now 42, developed her repetitive motion
injury, Toyota at first accommodated her by assigning her to inspect the
paint on finished cars as they moved along a conveyor belt at the rate
of one a minute. That job involved minimal use of her arms.
But then Toyota required her to use a sponge to wipe oil on the cars.
Her physical problems returned. When Toyota refused to change her
assignment, she stopped coming to work. The company dismissed her, and
she sued.
The Toyota case is one of three cases involving the disability act that
are on the court's calendar for the current term.
US Airways v. Barnett, No. 00-1250, which was argued last month, poses
the question of whether employers must accommodate the needs of disabled
workers even if the accommodation overrides the seniority rights of
other workers.
Chevron v. Echazabal, No. 00-1406, to be argued next month, asks whether
an employer can refuse to hire someone whose disability would make the
job a threat to his own health or life.
E-mail Linda Greenhouse your questions at scotuswb@... with
"Supreme Court Q & A" in the subject line. Please include your name and
town in the message.
Copyright 2002 The New York Times Company | Privacy Information
article from:
http://www.nytimes.com/2002/01/09/national/09SCOT.html?ex=1011600161&ei=1&en=43f\
3cba9f2c2fcfd

Re: The 4th, of July

2008-03-27 21:15:38

that was driving through all merged to the far left lane, beautiful
colorfull bursts of red, white, blue, orange, and alot of different
colors were lighting up the sky like the end of a long battle at that
second and the whole world was rejoycing and singing in the
streets....the line of cars was VERY long, and the traffic quickly
increased....I could see a long line of cars driving slowly in both
directions as far as I could see....and with the flat land moving off
from the foothills it was a long ways.
And still there were fireworks in all directions from time to time,
but things were winding down and the traffic continued to grow in size
as the celibrating masses gradually started for home...The heavier the
traffic this night the more Happy inside I became...It was an awesome
feeling, something like I never felt before, not even when I was a
little kid and we were sitting right next to where we could watch our
dad out lighting the fireworks in a field near the Wisconsin, and
Grant Rivers. I used to sit on the banks of the Mississippi River and
watch the reflection of the fireworks in the glistening water After I
got my lisence...but that doesn't come close to what I had before me
at that moment. I've never seen anything like it in my life, and I
felt like I was on a cloud, without even a touch of alcohol, lol.
The traffic was like the rush hour during the busiest part of the day,
but different, the traffic was moving lol.....I even saw a big red
burst right behind a tall skyscraper, that gave me the immpression of
what it could be like bursting behind the Statue Of Liberty, it was so
awesome, and that was when I thought they were all done for the night.
By the time I got to that last stop light before I turned in for my
apartment I waited through 3 green lights since the raffic was so
congested...and I was smiling feeling awesome inside, still awestruck
by the displays that had been all around me and the endless line of
traffic still in both directions of me now....
It was a wonderful evening for me!
Karen
(Sorry, my computer crashed after the goofy thing started typing
invisible while I was trying to post, so I posted it half done and
tried to continue it and lost everything the first time and had to
reboot....maybe the computer is hinting I talk to much LOL....ya
think? (giggle))

NYT article: A Quiet Revolution for Those Prone to Nodding Off

2008-03-27 20:23:37

Hi,
This is my first posting. I'm a 44 year old male.
My N was diagnosed last August from a sleep study.
I have had symptoms for 25+ years.
I take 200mg Provigil, which I find helpful.
I am looking for information on N support groups
in New Jersey in case anyone can help me.
Here's a link to an article on N in today's NY Times
Health section (might need free registration to view it).
January 8, 2002
A Quiet Revolution for Those Prone to Nodding Off
By DAVID TULLER
http://www.nytimes.com/2002/01/08/health/anatomy/08SLEE.html
Regards,
Jerome S.

The 4th, of July

2008-03-27 17:39:30

I had a really awesome 4th of July this year. I didn't really expect
it, because I was working the weekend. I work in security in the
foothills until 10pm. Way in the distance I could see a few things,
looked like it was right in Denver a long way off from where I was.
The day went fast because it was a busy night with barbeques and lots
of guests checking in.
The little fox did show up and trotted down the wrong way on the one
way street, but he is a regular. My relief came and it was time to go
home. I started down the mountain passing the first guard shack and
as I got out of the trees, big bursts or red and yellow lit up the
sky. It was beautiful, I never expected the fireworks to still be
going. It had been dark over an hours already.
Drove down a hill and over another, then wound down again and as I
topped the last hill I could see the panaramic veiw of the city and
there were fireworks in about 4 or 5 different directions, some were
farely close and some were far in the distance, but the view took my
breath away.
I continued on my course for home, deciding the interstate shouldn't still
be having construction tonight. I couldn't remember anything so nice
before and tried to remember where I was last year on this night. I
guess a year ago this night I was in Colorado, but things were
different, I was almost constantly lost and brave only to a certain
extent....lol....and since I have been working for pay I have always
worked every holliday.
The farther I drove into the city the more spectacular the firework
display became. I turned onto the interstate and at first i thought
there was a traffic jam from a wreck or something. Cars were lined up
along the right side of the shoulder of the road and all the traffic

Palo Alto Group

2008-03-27 09:12:05

In a message dated 1/8/02 1:09:54 AM Pacific Standard Time, WakeUpSue@... writes:
Dear Sue:
I did ask the techs when I went to the meeting you mentioned. They only know about apnea related meetings. I asked the person who answers the phone at the clinic and she said she doesn't know about anything Mali is organizing. Guess I'd hoped Mali would respond to this request.
Regards,
Vicki

com

Re: Palo Alto Group

2008-03-27 01:54:52

Dear Vicki:
As I think we've discussed over the last two years, there are no groups
in Palo Alto at this time except I think that Mali Einen is trying to
organize one. You attended the AWAKE group just the other evening at the
Stanford clinic and could have asked the technician that organizes that
group. What is this all about anyway?
Sue Carella
"Ignorance is our enemy; information, our most important weapon."

Re: Happy Birthday Ray!!!!!!!!!!!!!!!!!!!!

2008-03-26 19:20:39

Thank you, Karen, I really appreciate that.
Twas a great day!
Ray

Re: [narcolepsy] N Support Groups in the Palo Alto Area

2008-03-26 14:30:09

Go ahead and call , the doctors are really nice and so are the workers,
they are really good about answering questions, and really you are not
bothering them , I thought so and told them how I felt about calling
them , they told me no no that is what we are here for. Good luck and I
hope you find a group , I know I sure miss not going to a group anymore
, I am the only in this town that has N and C.
bye for now
Spinner

Happy 4th of July!

2008-03-26 12:11:20

I hope that you all are able to get together with friends or family
this weekend and celebrate our independence. We are having a cookout
and fireworks here at the house. Should be a good time as its not
supposed to be too hot like last year. Have a safe and fun weekend
and hopefully you will get monday off to recouperate as well. Take
care!
Bill

N Support Groups in the Palo Alto Area

2008-03-26 06:11:26

Hi Everyone:
Does anyone know of any support groups for pwn that might meet at the
Stnford Campus? I thought someone might have mentioned that one of
the members here runs one, but not sure.
Guess, if worse comes to worse, I can call the clinic and ask, but
hate to bother them with a bunch of questions. Maybe someone can
email me or post the support group information about the particulars.
Thank you.
vic

Happy Birthday Ray!!!!!!!!!!!!!!!!!!!!

2008-03-26 03:01:19

I hope this special day is the best yet!! Have a wonderful Birthday Ray!
Karen

New Forum - Life Experiences

2008-03-25 13:43:07

Hi all,
I've just updated my forum area with some new area's.
If you think you can add some of your life experiences as a disabled
wheelchair user, I'd be really grateful if you could share them with our
readers.
You may think you have nothing to offer, but any advice, big or small, can be
invaluable to someone who is new to a disability or wheelchair.
I have always found this group helpful, and am grateful for your comments.
Thankyou
Simon
http://www.apparelyzed.com/forums/index.php?act=SC&c=4

Re: A cool hello.

2008-03-25 08:26:04

Bill,
Your posts are wonderful...the words paint such a lovely picture in
my head of the wildlife around you!
I hope you find something you like to occupy your time, it's sad that
the job didn't work out.
Brigitte

Unseasonable cool here.

2008-03-25 03:53:14

Hello everybody, we have about a ten degree difference in our temps
from what is normal. That's good for our air conditioners but not as
good for our crops. We have field corn tasseling around us already
and it used to be if your corn was knee high by the 4th of July you
were doing good. Also saw some wheat combined today which is a week
and a half early for that. The seasons seem to different than what
they used to be.
We still have several bunnies around. Thought I counted at least 7 or
8 last night. Dad puts out a suiet block for the woodpecker type of
birds. The sparrows and black birds have taken a liking to it and are
hitting it pretty hard now. He got a salt block today for the
critters to lick or chew on. We see the rabbits along the edge of the
road trying to get the salt left over from the winter snow removeal.
We have had deer licking the driveway where mom has dumped the ice
and salt from making home made ice cream.
Does anyone have big plans for the 4th? I guess we are going to have
a cookout and some fireworks Sunday. My moms mom is getting older and
she wants to have her out like last year because she doesn't know how
many more chances she'll have to be able to get out and do this kind
of thing.
I hope you all have a great week! Take care.
Bill

Re: [narcolepsy] To All Participants

2008-03-24 23:52:52

Ok Trent , I will forgive you , but you might be hearing from
snowhitedove , I sent her an e-mail saying ""go ahead and let him know i
will be one of his studies. Just let me know when and how you want it
done .
Norma

Re: Group picture......Giving Daddy a hug :)

2008-03-24 15:27:38

I went to have lunch with my parents at their home, then we all went
up to see my sister who's just moved home. They're now a little
closer to us, but not much. It's a beautiful converted barn though,
with a lovely garden.
Other than that I didn't do very much, after seeing Elton John in
concert last week I was still quite tired, and still debating with
myself whether to go to my first-ever soccer match to see if the guy
I met was for real!
Brig

To All Participants

2008-03-24 10:59:40

I know, I know Spinner...believe me I am trying. Once the draft was
completed for the study, my advisor thought that it would be a good
idea to also run a small pilot test run with it to make sure the
formating and questioning were ok. I expect to have those back very
soon, so I can actually get the main part of the study rolling. I
apoligize for the delay, it was just something I could not have and
did not plan for.
Trent

A cool hello.

2008-03-24 08:38:17

Hi everyone, the temps are below normal here for a couple of days. We
don't have to run the air conditioner and keep the windows closed
because of the cool temps. That's all right though. We have about 120
acres that was put into a tree program a couple of years ago that has
been good for the wildlife around here. We have quite a few rabbits
that have been playing around in the yard and a couple pair of quail
that come and eat feed that dad puts out for the birds. Only bad part
is a blacktop road that runs right by our house gets a rabbit every
now and then. We have quite a few finches that feed here as well as
some humming birds that like to fight every now and then keeping the
others from feeding. Dad said he heard a wren also but they haven't
nested in our wren house yet. He thinks they found a fence post to
use as their house. I see a blue bird every now and then bathing or
drinking from the birdbath. Still have a deer or two that come up and
eat the leftovers.
We have missed all the sever storms that has been going through our
area the last couple of weeks. We still could use some extra rain for
the crops to produce good at the end of the season. Our neighbor
planted 80 acres of peas and has mowed them off and big round baled
them because it was to warm and didn't rain enough to get them to
grow very well. This was the first time he has tried to grow them.
More and more farmers are growing specialty crops to help with their
incomes.
The paper that I did an internship for and was helping on my own time
closed down. It got started with a grant several years ago and didn't
get another one with all the cuts it couldn't support itself. A small
town just didn't have enough subscribers to make it pay. I am working
with an employment agency to try and find a job somewhere close.
That's a hard thing to do with the economy the way it is. I have
thought about trying that SMC thing that advertises on TV. They have
100's of items and you can sell them at flee markets, the internet,
send out brochures or have like Home Interior parties. I am not sure
what to do with myself yet. I'd love to have a great job but am
worried about losing my benefits that I am receiving right now.
I still like to watch all of the NASCAR events every weekend. I like
the 360 show where they follow some drivers around and show what goes
on in their daily lives. It was neat to see how Dale Jr. started
dating his girlfriend. I'm also trying to set up a web page for our
church. I know how to design it but we weren't taught how to upload
it to a server so that's what I'm working on now. I'm using Adobe
GoLive to design it since that's what I learned to use.
The sun is setting lower as I write this and looks like we will have
a nice sunset to watch. I hope everyone is doing well and all the
fathers had a great day! Take care and have a good week ahead.
Bill

Group picture......Giving Daddy a hug :)

2008-03-23 23:34:13

HAPPY FATHER'S DAY!!!!
Hope all the dads out there are really having a nice day. My dads
gone now but the boyfriend is a daddy so I'm going to get him out to
do something today...lol. His idea of fun is sleeping in front of the
tv or going to the casino.
I want to explore the mountains and have him sleep in the
car....lol...but he grew up in Colorado and thinks "mountains
smountains, try driving a semi threw them in a blizard and see how
much you like them" But ya got ta love him, he just doesn't see them
the way I do...they still take my breath away...but I'm itching to get
in them so far that I can turn all the way around and they are all
around me in all directions...lately work is giving me 3 days in a row
off. Boy what a trip if i could pack some clothes and go to work on
Saturday, and after work start driving west...and just see how far I
could go in three days. :)
I get a day off and he can't reach me on the cell he knows where I'm
at...but I do have this goofy ear problem I never expected caused by
the altitude...and I spend the night being sick after getting to high
in the mountains....he keeps asking if I'm sick of them
yet...nope...LOL....I only wish I would have had the nerve to move out
here earlier in my life...but I was living a safe life, never took a
risk of any kind...my idea of doing something risky was buying a motor
cycle, but there was noone to ride with and I was "afraid of
traffic"....lol...omgosh if anyone told me back then I would be
driving all over Denver back then I would think they belonged in a
looney bin, LOLOL...and everyone I knew would have had a big belly laugh.
Brig, Ray, Angella.....what did you do for Fathers day? Anyone do
something out of the ordinary, something special? or maybe had a
relaxing day when all you seem to do is busy things normally? What
about you Bill, any thing happening in your life?
Karen

I'm New

2008-03-23 20:16:56

Hi snowwhite, I love that e-mail name
hahahah
We all answered the guy who ask people to answer questions for him on a
term paper or study he was doing . I for one never heard from him ,
And I think he has everybody he wants, I've been reading my e-mail and
he has talk to alot of the other's .
anyway glad you are on our list to e-mail and talk to everyone. It
really dose help .
talk ;to you soon .....SPinner

Re: [angel's sci chat] OT-REQ: Your Suggestions

2008-03-23 06:09:24

Hi,
I see one problem with your site.
Some weeks before I sent you an
email via your site with my office
address. Till now I got no replay.
I expect from a good web service
an answer to a no-nonsense
question.
Cheers,
Albrecht
--
Albrecht Marignoni
orthoPoint Network
http://www.orthopoint.net

Re: I'm New

2008-03-23 05:06:52

I'm new - what are the questions?
I was replying to someone who was asking for people willing to answer his
survey on Narcolepsy for a paper he is writing.

Re: adderall

2008-03-22 20:26:55

Hello once again,I seem to have forgotten about this group.My apology
to all.About adderall,I have been on it now almost 4 years with
better than average results.I am on an extremely high dose(300 mg per
day)to acheive a reasonable amount of alertness.But as anyone with N
knows,I have good days and not so good days.If I don't keep moving I
will fall asleep regardless how much stimulent I take.I "chair nap"
on and off all day and this helps.My C is usually an overall feeling
of weakness especially in my legs with an intense need to sleep
following the attack.Rarely do I go all the way down,but have injured
myself when I have.I guess this is because I usually can ease my self
down but when I have a major attack it hits me like a brick!!Well
good luck to and God bless.............

OT-REQ: Your Suggestions

2008-03-22 19:59:02

Hi all,
I'm writing to this group and a few others to see if there's a section you would
like to see added to my website which would be of use to others. My site is for
disabled wheelchair users and different aspects of their lives.
I have already had some good feedback which has helped me develop my
site from these groups, so I thought I'd stick my neck out and ask for any
comments or suggestions for improvements.
Any suggestions would be appreciated.
Simon
http://www.apparelyzed.com

Problems with disability

2008-03-22 11:18:54

Hi all,

We have started the disability process have filled out all the paper work for his SS and LTD. He works for a nationwide AutoParts company and they consider his short term the 13 weeks they alot him for being an employee over 12 years.

We feel like we are chasing our tails and a LOT of his problems were misdiagnosed "shock". He actually had a cataplexy (complete shutdown) in front of a Physycians Assistant couldnt see the doctor because he was booked and the PA wrote down he fell asleep. When he went out I looked at the PA and told him he is having a problem now PA said Oh No he is asleep I stated again he is having a problem if he was asleep he would be snoring. I almost lost my complete cool at this point. Then when I was looking through my husbands records the stupid PA put he went to sleep.

The pulmonologist wanted to put my husband on a sinus nasal spray he cant stand nasal spray so he told the doc that at that point he was labeled non-compliant. The doctor put in his chart that he hadnt been seen for 2 years it had actually been 2 months even with the evidence in the chart we cant get that one changed.

It has been one big mess. Now because of him being on unpaid leave he has no health insurance so we are going through the New Orleans Charity Hospital system. So it is a hurry up and wait ordeal.

Thanks

Vicky

Researching the following Surnames in WV, VA, PA, KY, OH
Adkins, Cummings, Daugherty, Egnor, Evans, Hinkle (with all variations), Henderson, Linville, Mann, Perdue (with all variations), Roark, Sansom, Spurlock, Thompson, Vannatter

Also researching the following Surnames in MS, AL, La
Carter and Norwood

Re: [narcolepsy] survey and newbie

2008-03-22 08:04:36

Hello Vicky and Husband,
First of all let me thank you for your amazingly quick response...I
really wasn't sure if I would get any or not! To inform you a little
more as to the detail of my study here goes. The project will start out
as five smaller papers: Symptoms and Diagnosis, Treatment Options,
Research (Human, Canine, and Mice), Quality of Life, and finally the
Inventory of surveys that I will be taking. Eventually it will
culminate in a large paper (roughly 50 to 100 pages long). The quality
of life and survey section is where you come in. While I don't quite
yet have my complete survey questionnaire finalized, it should be done
within the next couple of weeks. I will add your name to my list and
you should be on the lookout for another e-mail from me then. The
survey will have some very basic parts and some parts that I will leave
in for you to share life examples and such. What you decide to share
with me is completely optional, and like I said, no one other than
myself will ever view your answers to the question. I appreciate you
taking the time to do this for me. It means a great deal to me to see
this project through both for my own personal knowledge, but also to
inform others about this relatively unknown and misunderstood disorder.
As a small token of my thanks, I am going to be sending out a finalized
copy of the paper to those who want one, again that will be included in
the survey. Thanks again for your time and be on the lookout for the
Survey E-mail!Trent

upcoming EXPO for people with disabilities.

2008-03-22 00:19:56

Hello to the group. Just a reminder about the upcoming EXPO for
people with disabilities.
Free booth space for Artists (any medium)
Wheelchair accessible hot air balloon. (free rides)
plus a lot more!
http://upwd.net
Thanks,
Diane

Vicky

2008-03-21 13:48:43

Vicky
You need to or your husband needs to go to the personal person at his
employment and demand the paper work
for short-term disability (if they have it) and/or long term disability papers.
You can fill them out yourself and file with that insurance company.
Then you must go down to your social security office or get them on-line
www.ssa.gov or call them
and get the paper work started with that.
The faster that you get this done and you are granted disability, your
disability date will be sooner, your husband will
not loose any work credits that he has collected over the years.
Be precise in filling out the paper work and make sure that you list every
doctor that he has seen for his
conditions. The more documentation that they can collect for the
disability the better.
rin

stem cell research..read...very important..

2008-03-21 12:20:29

Big..News. Big Events..
Please know the facts:
I just attended the first Stem Cell Conference. Leaders in the field of
research, patients, advocates and many more.
Do you want a CURE.....GET INVOLVED NOW.....THIS IS YOUR LIFE.
Know These FACTS:
Stem Cell research is the most promising path to curing many severe diseases
and disabling medical conditions such as Parkinson's Juvenile Diabetes, M.S.,
Alzheimer's, Spinal Cord Injury and certain forms of cancer and heart disease..
DO YOU OR YOUR FAMILY, OR FRIENDS HAVE ANY OF THESE...!!!!
Facts:
Two kinds of Stem cells; Adult and embryonic
Adult Cells are hard to extract in adequate quanties and are less plastic
than embryonic.
Embryonic Stem cells are delivered From Microscopic embryos developed for
IVF, in vitro fertilization which are in excess and destined to be destroyed.
SCNT(Somatic Cell Nuclear Transfer) Scientisit can use therapeutic cloning to
generate stem cells for research to find CURES. Scientists remove the nucleus
of the unfertilized egg cell and replace it with genetic material (like a
skin cell) Then they stimulate so that it divides. No Sperm is involved...No
embryo is created to be implanted in a womans..womb.....
WHO SUPPORTS STEM CELL RESEARCH
Nancy Reagan
Senator Orin Hatch of Utah
Gerald Ford President
40 Nobel Laureates,
2/3 of the American Population
Research Professionals at Harvard, Columbia, John Hopkins
and Stanford Universities
Support Stem Cell Research..We need help in your state..we need funds to
fight legislation......
You can email me to find out more and I will get you in touch with your state
people.
We won at the United Nations..We are on the Ballot in California.
YOU NEED TO HAVE YOUR VOICE HEARD TO BE CURED..IT IS UP TO YOU
Thank you for Reading this.
Madonna Long
Spinal Cord Injury 1981 and Lobbyist For you and others..

survey and newbie

2008-03-21 05:01:15

Hi

My husband has Narcolepsy complicated with sleep apnea, diabetes, depression, an enlarged heart and other minor complications or so the medical professionals tell us. All I can say is I thank god that we have a strong marriage.

He isnt supposed to take the normal meds for Narcolepsy because of his enlarged heart. He has had symptoms of what I now know is Cataplexy and the hallucinations. We cant get anyone to fill out the paperwork to help us get his Disability insurance through work (you know the one that they tell you is optional but it kicks in when your sick leave runs out) well it doesnt automatically kick in you have to prove you need it. I mean he has horrendous headaches, his mood changes quicker than mine and I am menopausal, dont get me started on his attention span.

Has anyone had to deal with these symptoms. Also is there anyone out there that cant take the meds for Narcolepsy how do they handle it.

We would love to be included in the survey.

Thanks

Vicky

Researching the following Surnames in WV, VA, PA, KY, OH
Adkins, Cummings, Daugherty, Egnor, Evans, Hinkle (with all variations), Henderson, Linville, Mann, Perdue (with all variations), Roark, Sansom, Spurlock, Thompson, Vannatter

Also researching the following Surnames in MS, AL, La
Carter and Norwood

Done moving - back online

2008-03-20 18:01:39

Well I'm finally back online, been unpacking like crazy. Diggers
daughter and grandson Cody came up to get in the pool yesterday. he
had to get in it around nine am, and he couldn't get past the steps
cause it was to cold yet and he was to short to be in it witout it
being up to his neck....
A trip to Walmart, some arm floaties, and a swim suit for "papa's
girlfriend" and we were back in the pool again...and it was warmer
this time....but to me the water was freezing...but you know little
kids they hop right in and haven't ever tried the floaties before, and
real soon got out of reach and started panicking, me and mom got wet
fast grabbing him...he was fine he just couldn't touch the bottom
anymore at all.
I have Sunday, Monday and Tuesday off so it will give me time to catch
up on my Assignments in transcription, I have been taking online.
Whats everyone been up to lately?

Re: [narcolepsy] Digest Number 314

2008-03-20 12:11:48

Hello Trent,
I do not have narcolepsy. My brother does. I'd be interested to be on your
mailing list of your finalized copy of the letter.
As my help, are you aware of www.drkoop.com ? It has lots of health info.
Good luck with your paper,
Kham Mai Nguyen (UWM-SOIS Graduate Student) <mailto:kmnguyen@...
"I am a moon following the Star."
Wisdom (Proverbs 4-13):
"Hold on to instruction, do not let it go; Guard it well, for it is your life."
Wisdom of the Buddha (edited by F. Max Muller):
"One ought to follow the wise, the intelligent, the learned, the dutiful, the
much enduring, the elect; one ought to follow such a good and wise Lord, as the
moon follows the path of the Star."

Re: My past few days...

2008-03-20 07:41:17

AAAAhhh, thats why Shelly was hiding....my cat Russell hated the box
too...lol...

Re: Moving to a new place

2008-03-19 22:07:26

Hope the move went smoothly and that you'll be back online with us
very soon! Missing you!
Brig

My past few days...

2008-03-19 17:24:24

I am home now from my parents, have been for a few days. I was later
leaving for the airport as the flight was delayed considerably -
thanks to the internet for that information! Then my Canadian
brother-in-law had to go through a different customs/immigration
channel to the rest of the family, and that took a long time. My dad
came through and stopped to let me know what was happening then he
went to take the bus to the long-term carpark to get his car.
Eventually the rest of my family came out and we all walked to the
other end of the terminal to wait for my dad to get my sister, niece
and nephew and most of the baggage. Dad took a long time and we
thought it might have been that his car had problems starting as that
has happened before. He did turn up finally, we got everyone and
everything loaded and wandered back to my car, via the toilets! It
was past 1am and there were a lot of people sleeping at the airport,
I don't know what was happening there. Uneventful drive back, my Mum
and brother-in-law were telling me what they had done, and a bit
about the burglary that day (from their place in Spain), and we got
back to their place at around 2.15am.
What was taken - mobile phone, credit card, video camera, quite a
large amount of cash in Euros, cigarettes bought for a friend's son.
Thankfully no travel documents were stolen. And my dad's car keys
too...he thought they were gone but he found them. Things could have
been a lot worse.
I had cleared the bed in the 'junk' room where my cat eats and
drinks. I put her litter tray in there and shut us both in for the
night. I knew she'd be ok as long as I was in there with her.
Got up when I heard the kids up and about. Went downstairs and had
coffee and later breakfast, then played with the children. The older
one is a real livewire! Shelley was hiding in her usual hiding place
in 'her' room, so I took her food away while I shut her in that room
and went to help with the computer. My dad and brother-in-law were
trying to figure out how to use the digital camera software to reduce
the size of pictures to send by email.
Went back to see if Shelley had emerged and yes, she was looking for
her food! I put the dish down, let her eat, then scooped her up
before she could get back to her hiding place and put her in her
box/carrier. Then a quick goodbye to everyone and we were on our way
home, where I let her outside for a while and then I slept for most
of the afternoon.
Since then I've been trying to get through the backlog of group's
digests from all the groups I'm in, and I'm getting there, slowly!

Moving to a new place

2008-03-19 10:46:15

Hi there this is the last morning I'll be online....moving into a new
appartment, and the phone can't be connected until next friday...I'll
most likely need a phone jack in my new office, and everything takes
time i guess...so everyone take care and stay safe....Talk to you all
very soon :)
Wind

Re: Bear photo in albums

2008-03-19 08:31:36

Karen/wind - cute bear, but I bet he could still be dangerous if he
wanted! How big do you think he was? Big-dog size or bigger?
Ray - you should have told us that the front page pics were ones you
had taken! They're very good!
Everyone else - I'm probably not going to be available online too
much the next week or so, I'm house-sitting for my folks again.
Brigitte

Bear photo in albums

2008-03-19 01:42:08

Anyone want to see the bear I saw at work yesterday? I put him in the
photo section :)
Wind

Hi there

2008-03-18 15:57:36

Hello everyone, sorry I was away so long. Haven't been online very
much at all....my wind name was getting swamped with junk mail and
spam in my mail box, and i couldn't seem to do anything about it....so
I made this name, but people on my friends list still call me wind.
I got out of the photography business and started a couple new things,
doing a transcription class and got a security job. Had 2 in fact.
The first one was nice, drove into town and did security for a
business parking lot, kind of nice but tiring working 6 days a week,
looking at the mountains in the distance and around behind the
building could see the light rail coming and going....mostly watching
for vandalism and dreaming about the mountains....and being very
tempted to hop the fence and see where the light rail goes.
Then I got a desperate call froom Diggers boss needing me right
away...higher wages and more hours. I didn't know what to do I hadn't
been to this place very long. I ended up going for it. They sent me
to the foothills in a guard shack as an entry guard, in a nice
residential area right in the mountains...I guess it is still
foothills but my ears feel like its mountains...lol...and I drove
around some of the side streets and they are mountain-like :)
This job is almost better than photographing kids, I'm in the
mountains, have to drive right to the mountains instead of look at
them like I have mostly done since I moved out here....the only
problem with this job so far is the residents are always bringing
guards snacks....and I don't quite know how to say "no thankyou, I'm
dieting"....I don't want to be rude...they are just trying to show us
they appreciate what we do.
Another cool thing working there is the wildlife....a lady asked me
one day if anyone complained about a mountain lion there Friday
night...I hadn't heard anything and there was no report made....then
she showed me a picture she blew up of the mountain lion snacking on a
deer in her back yard....she said a guy was walking a dog not to far
away and she warned him it was there...he didn't seem to worried but
he kept his eye on it until he got out of sight of it. I might be a
greenhorn but I'm not sure i would walk a dog past a mountain lion
having dinner.
I have seen 3 foxes though.....one is so taim he thinks he is a puppy,
my captain up there has had the darn thing sit right by her while she
is watering the lawn wanting handouts. And the deer are thick around
there, they seen tame too, I don't think they hunt the ones around
there because we're so near a couple of parks, where they're protected.
I was a little dissapointed yesterday because I worked the early
morning shift and was hoping to get some pictures with my zoom lens
camera. Right before I left yesterday a guy (with a resident sticker)
checked in and told me there is a baby bear up on the hillside about
200 yards away...my releaf was already there and he let me go up and
get a photo....oh it was so awesome, he was a little black bear and he
looked shiny and happy and healthy....the only real bear i ever saw
was in a zoo and the thing was dirty kinda and looked so sad...looking
in his eyes was very sad. This little guy on the hillside was
playfull and kind of pranced away when there got to be several cars
stopping to watch him, but I did get several good photos.
I've read through some of the messages I missed while I was away and
I'll Try to help Ray Keep the spam under control, and post more often.
Wind (aka Colorado)
I love it in Colorado

Re: [narcolepsy] Any willing volunteers?

2008-03-18 09:30:27

i would be willing to answer any questions... however, you may be looking for the more "classic" narcoleptic...? i was diagnosed just recently, but my only symptom is EDS. it does affect my life enormously. i am 24, married female, on adderall for treatment.

if you want, email me personally.

Wheelchair Humor T-Shirt Competition

2008-03-18 08:43:17

Hi all,
I thought I'd let you know that I have just opened a competition to win one of
my T-Shirts.
The winner will be drawn from all the applicants, and asked which design
they would like from the portfolio of designs. Following the first draw, this
will
be a monthly competition.
Good Luck
Simon
http://www.apparelyzed.com/portfolio.html

Any willing volunteers?

2008-03-18 06:10:08

Hello everyone-
I am a 21 year old college senior at a small college in Indiana. I
was diagnosed with Narcolepsy during the first part of my sophomore
year in college and have lived a changed life ever since. As part of
my senior project in college I am writing a research paper on the
disorder. In it I am wanting to investigate not only the the
disorder and its basics, but I also want to interview people and
discuss with them the effects the disorder has had on their life and
the changes they have had to make. Everything will be completely
confidential and only the results that I recieve will enter the final
paper. I have lived with this disorder for many years so I
understand what life is like, and can relate to you. If you could
only spare a few moments of your time to answer a few of the
questions I have it would be most appriciated.

Re: [narcolepsy] Hello all!! - Provigil Saga

2008-03-17 19:26:51

Dear Everyone:
My script is 90 200 mg. caplets per month. I pay $10.00 for this, it's my co-pay. If I had to pay out of pocket for this med., it would be $450.00. Yes, they cost $5.00 a piece.
I will reserve comment on the effectiveness of this medication. IMHO, this medication works for people with light cases of eds or those who do not have multiple sleep disorders that result in eds.
This medication, along with a stimulant works well. Gosh, I sure did not mean to start a provigil controversy, I was just telling you all about the show, lol.
I completely agree that studies are necessary, but $5.00 for one 200 mg. caplet? According to the show I sent a link to on ABC, this med will work well for "normal" folks. If this was the "wonder drug" for narcoleptics, why is it now being marketed and solicited for pwon. Is there a message there or a hidden agenda? Will everyone and their uncle be abusing this drug too and cause it to be a schedule II? Before long, pwn and people with ADD will have nothing to use that isn't being fiended on by abusers.
Sounds like time for a poll folks. How many have used provigil alone and have had success with it? IMHO, when a medication is offered or even considered for regulars, lol, pwon, what's the message? Read my lips. Another question I have is this: I just wonder if compounding dex. or adderal with provigil would be an option for pwn who have eeds, (made up a new one) extreme excessive
daytime sleepiness.
As to the issue of losing weight while taking adderal, I'm still waiting. Dang, that's one side effect I'd sell my bridge for (oh, don't own a bridge). I'm one of the lucky ones: no side effects period - no anorexic effect, no high bp (a steady 110/70 even after running in place and laughing) pulse barely there at rest 62, can still fall asleep while watching tv or reading lying down, and still can go to bed at a normal adult time.
Nitey nite all, time for this blabberer to go to bed.
vicki

Re: [narcolepsy] Hello all!!

2008-03-17 14:40:11

One question to you , What did Provigil cost
or did your insurance pay for it. I'm trying to find out if anyone in
another state pays more or less
California is 360.00 dollars a month.
Spinner

Re: [angel's sci chat] Hi All - New Member

2008-03-17 05:08:11

Dear Simon,
are you sure that you are the
owner of this website
http://www.apparelyzed.com ?
Regards
Albrecht
--
Albrecht Marignoni
orthoPoint Network
http://www.orthopoint.net

Hello all!!

2008-03-16 23:46:01

Hello everyone! I'm a 29 y/o guy with Narcolepsy that was diagnosed
about 12 years ago. As with every fall/winter, I'm having difficulty
with EDS...yawn..yawn. I had stopped all meds a few years back in an
attempt to address my problem naturally (herbs) and lifestyle
changes. It helped, but not as much as the meds. This year I
started taking Provigil, but not on a regular basis. I recently
started taking Effexor and was told not to take it with Provigil.
Now I'm feeling really sleepy during the day. Any suggestions?
G

RE: [narcolepsy] Check out ABCNEWS.com : Could Nightly SleepBecome Optional?

2008-03-16 19:13:34

That's great to say that it's only money that these companies care about.
You're right it IS great that they care about only money.
I guess the pill would have magically appeared on our pharmacist's shelves.
Not too many companies are going to research new drugs if they can't make a
return on an investment. The only way to attract the high risk dollars
which drug companies use to do research is to promise a high return on
investment to the investor.
We have to make a decision, either we can get New Drugs which are going to
cost a lot of money, OR we can Not get new drugs and buy that new car we've
all been wishing for. $360/month is a car payment.
I vote for new drugs. Everyday I thank the drug companies for taking risks
and trying new ideas, for every profitable drug that comes out, you will
find several losers which cost these companies Billions of dollars. If the
drug companies weren't in it for the money we'd still be bleeding each other
with leeches
trying force the evil spirits out of our souls.
-Andy

Re: Hi

2008-03-16 16:34:13

Hi Dawn and welcome!
I don't have a spinal cord injury either, and I'm here!
My name is Brigitte, I'm 37 years old and I live in England.
I just wanted to reassure you that you would be welcome here, and
hopefully you'll post from time to time?
Brig

Re: [narcolepsy] Check out ABCNEWS.com : Could Nightly Sleep Become Optional?

2008-03-16 05:16:23

Hi Vickie
Provigil is great , I wish I could afford it , As of today it is 360.00
dollars for one month. And my insurance will not pay for it . I got to
take a 2 month supply from my doctor to see if it would work for me,
When it did and I was really awake I had so much fun doing things I
couldn't do before , Well that's over back on my Rittlan, and taking my
naps.
Hopefully They will bring down the cost , There is a number to the
company that you can get it cheaper if you don't make any money , Well
my husband works so it is still out for me.
What a shame, I guess it's only money that the company's care about.
Spinner

Check out ABCNEWS.com : Could Nightly Sleep Become Optional?

2008-03-16 02:33:13

Click here: ABCNEWS.com : Could Nightly Sleep Become Optional?
I know this is old news for most of us, but hope it might help someone. This show is going to be on tonight, don't know what time though.
Didn't want to leave anyone out, so that's why the "Send To" is loaded, lol. I hope I didn't send a link to any of the groups where it is now allowed.
regards,
vickithesleepytennisplayer

Re: Hi All - New Member

2008-03-15 20:12:29

Hi Simon,
Welcome to this group! Please don't lurk, it's too quiet in here
with everyone else who also lurks! I'm Brigitte, from England too,
but over in Suffolk...great to have a fellow Brit on here.
Sorry to hear about the car crash. Cars and motorbikes can be lethal
machines. I know, because my little brother (aged 20) died from a
motorbike accident 11 years ago tomorrow.
Love your website by the way!
Brigitte

Hi All - New Member

2008-03-15 19:56:47

Hi There
Just thought I'd say hello as I've just joined the group.
I am a C5/6 Quad, sensory incomplete following a car crash in 1992.
I'll probably lurk for a while, to see what's going on.
Regards
Simon
http://www.apparelyzed.com

Re: [narcolepsy] adderall

2008-03-15 04:12:37

Dear Joanna:
If you like email me privately or IM.
vicki

Re: This is the

2008-03-15 01:25:25

Dear Group:
This attachment (download) has a virus. Unless you have virus
protection and the repair mode can be activated, don't download this
file.
vicki

Re: The grass is getting greener.

2008-03-15 00:33:00

Hi Bill,
I had a very good quiet and restful time, just what I needed. Life
is starting to get busy again, with people giving me little jobs to
do to help them out, and spending time with friends, and for the next
couple of months, my family. My sister and her family are here in
the UK from Canada 'on the way' back to their mission school in the
Philippines. They teach there. This will be our last chance in
possibly 4 years to see them all. It will be good to see my neice
(now 3 years old) and nephew (now 16 months old). My parents are
going to take them all to Spain - no room for me and someone has to
look after the dog - for a week, so me and my cat will be moving in
for that week! I'll need to keep the cat inside though as there are
so many wild birds nesting in some very accessible places and it's
not fair on those defenceless birds. The cat will have plenty enough
space to roam inside anyway.
So that's enough from me - the final episode of Friends will be shown
here in two weeks or so, so please do not tell me what happened!!!
return.

This is the

2008-03-14 19:45:44

- ipf.ini
(optional, found in \bin directory under the directory where
you installed IPF)
This is IPF private profile for setting colors for IPF windows
and text.
IPF for Windows will search for libipfx.dll in the following order:
1. current directory
2. Windows directory (the directory containing WIN.COM)
3. The Windows system directory (the directory containing
windows system files such as GDI.EXE)
4. The directory containing the executable file for the
current task.

Re: Looking for People

2008-03-14 08:28:32

Sorry I can't help. I am in England, but don't use a wheelchair.
Brigitte

New Member

2008-03-14 03:05:11

I've just been diagnosed with N and started on Provigil. Today was the
first alert day I've had in 15 years. It's weird.
I have seizures as well and am on several meds for that, for high blood
pressure, and for migraines, and I have a pacemaker. Other than that,
I'm doing just fine!
Anyone in a similar situation -- especially with regard to the
epilepsy?
I am a farmer -- sheep dairy, Icelandic Sheep in New York State.
Harry

Re: NO SPAM, PLEASE

2008-03-13 23:34:34

THANK YOU RAY!!! I did mention the first message to Karen in offline
IM yesterday but I think she must be busy...and I now see she is no
longer a moderator anyway.
Brigitte

NO SPAM, PLEASE

2008-03-13 21:05:02

No spam in here, folks.
Spam messages will be deleted and a second offense will get the
author deleted too.
Sorry, but we have enough of that garbage in regular email; we don't
need it here too.
Ray

RE: [narcolepsy] Alpha Intrusion

2008-03-13 05:31:06

Right I don't think it is a disorder in itself, But rather a symptom of
several different sleep problems. i.e. Fibromyalgia, APNEA, and probably N.
On of the links was a speech by a doctor who said that before she tries to
treat the Alpha Intrusion with drugs, she usually make an in depth search
for some kind of pain somewhere in the body.

Looking for People

2008-03-12 21:59:35

Hi,
I am looking for people who are interested
in helping me to offer wheelchair mobility
training courses in the North of England.
Actually I am starting a new company
in that field.
The North West Development Agency
help me to locate to the North.
People who are working for this courses
will get money.
First I will offer this courses for childs,
later for younger adults too.
You need some skills using your wheelchair...
My Website is
http://www.orthopoint.com
My address is
orthoPoint
Albrecht Marignoni
Weststrassee 49
D - 59065 Hamm
Fon: +49 02381 - 49 20 12
Fax: +49 02381 - 49 20 13
Email: marignoni@...
Thank you in advance and ask questions
please.
Kind Regards,
Albrecht
--
Albrecht Marignoni
orthoPoint Network
http://www.orthopoint.net

Alpha Intrusion

2008-03-12 21:46:47

Dear Andy,
I could not unzip the files you sent. It would have been interesting
to read what you sent. Just a coincidence, but yesterday I asked one
of the Stanford lab techs about alpha intrusion. She told me that it
is common with pwn. I already knew that it is symptomatic of
fibromyalgia (said so on my first sleep test). On that test I had 3
early onset rems, but later was told that one was for sure and the
other two were hard to read because of alpha intrusion.
I've never heard of alpha intrusion being an actual sleep disorder;
but that doesn't mean anything, just never heard of it. As far as I
know, alpha intrusion is awful because it keeps people from going into
the deeper stages of sleep. For pwn, I am certain it does not keep
them from REM sleep first. The REMs are just more difficult to
determine and read.
One of the techs at Stanford told me (back in August), that alpha
intrusion is very common with pwn and explains the disrupted night's
sleep pwn get.
I hope I did not give out wrong info, don't want the wrong info police
to get me, lol.
r

RE: [narcolepsy] any help for "alpha intrusion" condition?

2008-03-12 12:50:28

Here are a couple links on Alpha Intrusion

The grass is getting greener.

2008-03-12 10:38:29

Hi everyone, we are back to normal temps, which seem pretty chilly.
It could possibly frost in the next couple of days that wouldn't be
good for the flowers or corn that's up. This last week I saw 2
turkeys and a group of 7 deer one night and 5 deer tonight. The deer
don't come into the yard but eat what must be salt leftover from the
winter along the blacktop. I even saw one scratching along the grass
to get fresh dirt I guess.
Hey Brigitte, how was your vacation? I bet it came to a close sooner
that you wished it would. They never seem to last long enough, huh? I
hope that it all went well and you are doing well since your return.
Well, another weekend of NASCAR. Anyone else a fan of NASCAR? The
wood brothers got the pole for this Nextel race with Ricky Rudd. It's
been 20 years since they have achieved that goal. I found that hard
to believe.
Is anyone interested in 3rd Watch on Friday nights? I really like
this show. I was disappointed that they moved it to Friday nights. I
liked it better on Monday nights but then again I like CSI on Monday
nights. Tuesday nights I like NYPD Blue. Wednesday has nothing that I
care for. Thursday nights I like Friends and ER.
I hope that you all have a great weekend!
Bill

Re: What a great group...

2008-03-12 02:07:52

I'll check it out!
Ray

any help for "alpha intrusion" condition?

2008-03-11 17:07:20

A sleep doctor diagnosed my brother with "alpha intrusion" condition
when in sleep test they found he gets no REM sleep and therefore he
is always tired during the day. I looked at www.drkoop.com, a
normally good health info site, and found nothing there on this.
Has anybody found a good way to alleviate the problem and/or a good
medication for that?
If we keep researching and corresponding on this, maybe we can find
help for this condition.

Re: Hello everyone

2008-03-11 11:32:20

I wish you good luck in the job search.
And you won't know what you can and can't do until you try things.
When you do, focus on your 'cans' and forget the 'can'ts'.
Ray

What a great group...

2008-03-11 10:36:08

hey, Great group..My name is Madonna I am a t-4 para..I have a site
called Paramom.com check it out. Let me know if you would like to
add to it. Thank you..Please anyone can email and ask any questions
of me
Madonna
Paramom.com

RE: [narcolepsy] Vic

2008-03-11 06:23:15

It seems like Rinn has tried to help you. What more do you want from her?
FYI, EDS is a symptom of Narcolepsy. Idiopathic Daytime Insomnia is a term
for people who are suffering from a symptom called Excessive daytime
sleepiness. Idiopathic means they don't know the cause of the Daytime
Sleepiness. With Narcolepsy, The cause of the EDS is traced to the lack of
Deep NonREM sleep. Unlike IDI, Narcolepsy has other distinct symptoms
including Cataplexy, Sleep Paralysis amongst others.

Vic

2008-03-11 02:39:05

Vicki
Once again I ask you to show me these email's.
I am not trying to convince the universe that I have N.
If you would read my last post, you would see what my
diagnosis was.
6 months ago when I was first diagnosed, I was trying to
figure out what the difference between N and EDS/IDI.
I guess in here you have to be part of the click that Sue, Dave
Andy, and yourself to fit in or get some help.
There is a big big difference between CSA and OSA and the
treatment of each.
A person cant even get a straight answer in this forum.
Keep chasing them away Vic, then you will be happy.
rin

Hello everyone

2008-03-10 17:56:15

A new week is starting and so far we haven't received any rain.
Things are getting pretty dry here. We have had the windows open
enjoying the fresh air for a couple of days now. The wind has been
blowing pretty hard today. I'm glad that we have a blacktop road by
the house instead of the gravel road of several years ago. Still get
dust in the house but near as bad. People like to fly by our house,
which isn't a good thing, but luckily there have been no accidents so
far. We live on top of a hill and there has been some close calls
especially now that there are big farm tractors and implements
driving by. A lot of farmers are getting close to done planting corn,
which is way ahead of schedule. Once we get a good rain it should all
come up as the ground worked up in beautiful shape.
I went over to Macomb Thursday and am going to have Bridgway (a job
placement company) to have them find me a job. My ORS counselor set
up the meeting with them to help me out at finding a job. They are
coming to my house Tuesday to get a more personal interview of me to
help them place me. I am a little nervous about getting a job and not
being able to do a good job at it. Being a manual labor before my
accident and now not being able to pick up a pen or paper with my
hands without a splint really has me worried about working in an
office. It will be nice if I can find a part time job and get some
experience to find out what I can and cannot do. I think if I had
done some kind of work like that before my accident I would have a
better mind set at working in this situation. With the way employment
is around here it might be a while before anything shows up.
I hope that everyone has a good week! Take care.
Bill

Re: Hope you had a Great Easter!

2008-03-10 11:15:45

Good to hear you got a job!!! Great news! What are you doing? I
guess with the course and the job you're not getting much time to
chat online huh? I miss being back in the states when I could at
least chat with you most days...! LOL...
How are your Mom and the rest of the family? And how is the new
addition? Got any photos sent to you yet? ;-)
I know how you must have felt when you went back to your old
workplace...I miss the kids I used to work with too, even now. Once
you're settled in a new longterm job, you'll be fine.
Brigitte

Andy

2008-03-10 00:55:54

Who said that I have not been to Apnea sites?
I have plenty of them book marked and visit frequently.
The trouble is that there is not alot of information on
Central Apnea and Obstructive apnea for your information.
The reason that I belong to this list, for your information is
that people can have muti diagnosis.
I really cant see the harm I am doing by asking questions.
rin

Hope you had a Great Easter!

2008-03-09 18:03:35

Hi there, Hope everyone had a fantastic day for Easter! I got another
Job now but not in photography. I'm also taking an online course, so
my present job is hopefully a temp job to sort of fill in until I get
going on other things...its sort of an odd job for me, in alot of ways.
Made it back to Olan Mills for the first time Yesterday since I left.
Nothing has changed. Oh a new girl was sitting around looking bored
while Martha was photographing some kids in their finest Easter
Clothes. And I missed the kids, Didn't miss all the hassel the
management dished out. Sort of wished I could give the Girls the day
off and walk back in and take up where I left off....curious what
happened to Jackie, if she got her drivers license, and Karina, if she
became Manager of the Federal Studio. Never thought I would miss Olan
Mills...knew I would miss the kids.
Wind

Easter wishes.

2008-03-09 18:02:59

Hello everyone, just wanted to wish you all a Happy and Joyful
Easter! We are having dinner here at the folks house with several
family members coming from both sides of the family. Its nice that we
all get along so well. Take care and Happy Easter.
Bill

Re: TGIF

2008-03-09 03:52:16

I'm going for two weeks, Bill.

Special price on ebay for Automotive Portable Hand Controls!

2008-03-09 03:36:41

Spring special on portable hand controls on ebay. Check it out.
Do an advanced search for user and type in p-d-enterprises
or do a standard search for hand controls. You will find them either
way.
Best price for a set of new controls in the World!
$150.00 plus shipping.

Re: A new month is here.

2008-03-08 16:46:18

Yes, Bill, I didn't know what to think. I had to make myself focus
on the drive back and put everything else to the back of my mind
until I got back safe.
I'm now preparing for my vacation so any work plans I had are on hold
until I get back. Still got a few options open to me.
Brigitte

Re: [narcolepsy - the spiritual side]

2008-03-08 12:11:47

Hi Rin
When I read about pain like yours I feel a sense of wonder and awe at the
strength of the human spirit and its seemingly endless capacity for enduring
suffering. I've known many people who've thrown in the towel long before
reaching the levels you describe. I must confess that I'm a bit at a loss as
to what a lot of the technical stuff means but I can sense your pain...
especially that which is associated with trying to raise children in the
same breathe.... and I know that I have been changed because I care.
My heart goes out to you. I'm grateful to the Father who has made it
possible for me to reach out to Him on your behalf otherwise I would be
helpless. I want you to know that at this point in my letter, it is 02h15
(GMT +02h00) on the 13th November. I went to bed earlier with a prayer in my
heart for you and for others on this list. I was woken up by a missed call
at
2 am on my cell phone. I noticed that the caller was my friend Margi who is
in pain because her husband has gone off with someone. So I called her back
knowing she needed to talk to me. She said she was angry with God and that
he was a sadist for putting her through this. However she was grateful that
I had called her back and she felt it was at least a miracle of sorts. Why
I'm telling you this is because I didn't have any real words for her. This
msg was in front of me on the computer and I decided to read her some of
your situation. She didn't respond for a while and then suddenly started to
pray for you ... right there on the phone. So I joined in. For about 10
minutes we prayed. She asked God to take her feelings as a sacrifice for
your peace and that He should attend to you and not worry about her . After
that she said she felt like a baby that had been sung to and was ready to
sleep. Please tell me what has happened since then on your side. It reminds
me in a small way of the true story of the old fashioned preacher on a
sinking
ship who gave up his place on a lifeboat for an 'unsaved' person. His
parting words to him were that he should use the extra time to get to know
the
Father. He did indeed and since has reached out to many in unwavering
commitment and gratitude. And what about the twin brother of a person who
murdered
someone, came home to discard his blood-stained clothing and then fled. When
the police arrived his 'saved' brother had put on the discarded clothing.
Naturally they assumed him to be the guilty party and he was duly tried and
found guilty. The brother then returned in remorse but was unable to stop
him from being hanged. The parting words ... very similar ... 'I want you
to take over my life and discard your old ways.' It had the desired effect.
I have no doubt that they met again in heaven. It is written 'Greater love
has
no man than this, that he lay down his life for his friend'. That is why
Jesus paid the
price for all of our sins. Are we at least grateful ?
I'm not sure why it is that He hasn't given you a wake up call yet as He has
me and many others, but I know it will come. I know it seems crazy, scary,
outrageous and even infuriating, but if you could just let go of all the
reasons you have for not being able to trust in God, things would fall into
place. It happens for huge intellects like Sir Lionel Luckhoo (get his book
from Amazon) and it happens for simple people like me. Whenever it happens,
it always brings inner peace and the realisation that He cares about you
enough to have suffered unspeakable agony to make a way for you to know Him
intimately and to prepare a place for you in heaven. Those who 'have no need
of Him' will always scoff and ridicule those who choose to turn to Him.
Those who turn to Him but refuse to let go of their old way of thinking will
always set a bad example and be a stumbling block for those who are still
thinking about it but need more time. (Hence inquisitions, Crusaders, etc,
etc)
I can't agree with Nancy that N/C/? is something to be grateful for in any
sense other than that it IS an opportunity for us to find Him who is able
to turn darkness into light, pain into peace and sleep into rest.
There are so many tricky bits. One would naturally be inclined to be angry
with God for knowing our pain and not taking it away if He really is as in
control as He says He is. It helps to see God as a good parent who is more
concerned with showing us the source of our pain and how to avoid more, than
just removing the struggle. Our eternity is far more important to Him than
whether we live 'happily' ever after or not. The notes we make on our souls
in this life determine whether we will enjoy eternity or not.
Another thing I have learned is that speaking the problem only grows the
problem. When I started speaking that which I hoped for as if it already was
and thanking God that He was making it happen, guess what ... ? it started
happening. Real slow OK I agree .. but fast enough to force me to
acknowledge that it was happening. My ex-wife who I worshipped once, still
intends marrying the wealthy professor and taking my children off to
Scotland .. I still haven't found out who my parents were ... and as of
yesterday I still fell over with C ... and yet I have many reasons to
celebrate. I can remember things again .. I have no more fear .. I am
loved .. I don't have to pretend anymore. Good things are happening.
Its been worth handing over my old ways and I know that things can only
improve. When I'm threatened with death by my old enemy slewfoot, I can
laugh and say thank you for the offer of promotion. YOU can too You
will get to understand and know how to resist the enemy of your soul and all
his tricks and deception if you seek first the Kingdom of God. Don't be
offended....it works and its for free because Jesus has already paid for us.
I paid dearly for foraging in the dustbins of deception to learn this but
then He showed me that the truth will outshine false religion every time if
you keep digging.
May the peace which passes understanding come to you and may you
be returned to health and bring up your children in the knowledge of the
Lord, through the promises of God and for the sake of His glory in this
dying world.
love from peter
did you know that Z means 'He lives' ... ZZZZZ is a celebration

A new month is here.

2008-03-08 04:23:46

Hello everyone, March is coming in like a lion. We are expecting
temps close to 65 today. The wind is blowing pretty hard so that
makes it a little less desirable outside but we will take it. Went
and ate at Pizza Hut yesterday and had some delicious pizza. I love
the pan crust with ham and extra cheese. Glad that I'm not on a diet
because we had homemade ice cream, both vanilla and chocolate and
cake at my nieces birthday party. Of course I had two helpings. They
also fed us sub sandwiches with chips and dip. I ate a small ham sub,
don't like cheese on my sandwiches and some chips and dip. We all had
a good time there. It's the first time my grandma missed coming to
birthday party that I can remember. Going over tonight to see her. I
can't remember if I said that she fell and broke her arm and is now
in a nursing home. So, I get to eat at Burger King tonight. I have my
mothers finicky eating. I get just catsup on my hamburgers. Dad has
been getting the veggie burger and says he likes them. I'll stay with
the real thing thank you.
Hey Brigitte, sorry to hear about you're scare with your parents
taking a later flight. Can't imagine your thoughts when they didn't
come through the gate as expected. Thankfully they turned up unharmed
and no broken bones this time. Did that teaching job you talked about
not work out?
I forgot to mention that on our way to town we saw 30 to 40 wild
turkeys out feeding on a soybean field Sunday afternoon. They sure