WP Weblog

Thank you.
I appreciate the sentiments.
Raymond

Hi there Ray! I hope you have a fantastic day today for your
birthday. I'm glad your family is home, I hope they take you out and
you get to REALLY enjoy yourself....birthdays aren't just for
kids.....A big Hug for my friend!
Karen (wind)

Hope you have a wonderful day......dooo
http://www.angelfire.com/mo3/pigpen0/rays_birthday.html

Hi Bill, Thanks for the compliment. I've been developing my own 35 mm
film on and off for over 20 years...done newspaper photography, did
weddings, photographed kids for graduation, developed color
film...done alot of trick photography in the darkroom, taught cameras,
and publications, and designed yearbook covers for over 10 years....
I notice alot of little things and am always designing how things
should be photographed...I shoot things from the best angle even in
the mountains....up hills over railings...I don't do anything unsafe
but I never let fear stop me from getting a shot...
But the last couple years I've decided to go digital....sold my 35mm
camera...that was hard for me because it like part of my body...and
the digital ones only do just so much, but maybe I'm getting lazy...LOL
I had my own darkroom or access to one half my life....I don't do
change very well, but starting to become more flexable. The photos on
the club are digital....kind of cool, instant photos....I've been in
the chemicals so many years I'm kind of alergic to the fixer. Of
course it never stopped me but its a good thing, digital.
Hey thats cool about the rain....
Oh, I painted a waterfall and finally finished it today...I was at the
social security office, my boyfriend needed a new card, and i was
touching up some places on the painting and a lady looked in the truck
and told me she wanted to buy it LOL. I gave her my business card and
sounds like she might buy it from me friday....kind of like to keep it
since its the first one I did in Colorado, and i need something to put
on my bare walls, but I guess I'll have to see. I'll take a picture
of it and post it in the photo section soon.
You have an awesome weekend!
Wind

THIS ATTACHMENT HAS A VIRUS, DON'T OPEN.

Hi Bill.....I change the photos right now....I just find cool looking
ones of funny animal ones.....been photographing flowers in Colorado
recently and putting up some of those over the next few days or so.
If you have any requests or would like to see a certain kind of thing
let me know :)
I found some real live cactus growing all around the Aurora Colorado
Resevour, today while I was bike riding....I never expected Cactus
growing wild in Colorado.....I guess I won't be able to go barefoot,
in the grass...they were so Beautiful I would like to share these photos.
wind

I don't have any plans yet for the 4th....but I do have 3 days
off...the 2nd, 3rd, and 4th...hope to paint, bike ride, sneak into the
mountains somehow....been grilling out a few times...that might be fun
too...but no plans as of yet....I have to give it some thought....not
even sure where to go to watch fireworks around Colorado....
wind

Hi everyone, I was wondering if someone manually changes the pictures
or if they are done automatically on the home page. I'm not to
educated on how that works but they are nice to look at. Another hot
day here as temps are in the low 90's. A good day to stay in the
airconditioning.
Is there anyone who is interested in tennis? There has been a few
upsets with the top contenders already this week. I got into watching
it when I was confinded to the living room floor with a ruptured disk
in my lower back. That was not a fun time. Just glad my ex-wife had
good insurance then. It hurt just to get up and pee.
Hope that your week is going along nicely!
Bill

Hi all, it's good to see everyone posting here. Sorry I haven't been
doing my part. I'm lucky I guess because anywhere I go I always have
a place to sit as I have a powerchair to guide me around. I usually
use a manual chair around the house and a powerchair when go out.
I've foung a few places that are not wheelchair friendly and have had
to get a helping hand to get out. I glad that you all are doing what
it takes to be mobile. I used to do a lot of pushing around outside
on our patio and gravel drive but I'm just not able to get in and out
of my van in my manual chair so I depend on the power when I go out.
I have a workout machine to help keep what muscles I can use in
shape. The weather here has gotten into the right mode as it get near
90 and maybe over that tomorrow and I don't get along with that warm
of temps because of my level of injury. I don't sweat and can get
overheated easily.
Does anyone have plans for the 4th? We went fireworks shopping
yesterday and got our supply. We've been having a cookout and
fireworks for about 3 years now. Hopefully we will get some rain
before that so we don't have a fire hazard to deal with. They are fun
to watch but I miss being able to light them myself.
Hope you all have a good week!
Bill

You do an awesome job with your walker.....and running that thing
clear across the USA would wear anything out...LOL....that was some
trip you took. I've gone distances of only a 12 hour drive or once a
4 state plane trip to meet online friend...so you still have me
beat......well, you do awesome except when we're in the mall guy
watching and I get you laughing to hard LOL....I'm bad....
Wish I could get up enough nerve to fly to England someday, but it
would be cool to have you drop into Colorado sometime, I have a mall
not 10 minutes from me....won't be getting lost driving to the one in
Sarnia Canada.....do sort of miss driving up into Canada....and I
miss Canadian "poutine".....good greif that was awesome....If I can
get Digger talked into it, Might just try a road trip north and see
if I'm out of Ontario this far west.....Ontario is one BIG
provence...going to tell Digger (my fella) "lets go out for supper"
LOL.....and when he says ok, I'll start packing an over night
bag....lol......in the mood to do something spontanious again LOL.
wind
aka colorado_karen58

Well, it sure wore me out....LOL....but it was an opportunity too
good to miss, going across the country and meeting up with many of my
internet friends. <sigh
You know you need to be careful when you invite me to drop into CO
sometime....I might just do it! I haven't had any vacation at all
this year and have no plans for one - that's very unusual as I like
to have something to look forward to. Any good stores in that mall
near you? I miss being able to go with you into Sarnia too, I sure
do miss Tim Horton's too....LOL....hey...I just miss Canada!!! I bet
you know what I mean wind....<sigh
Need to go guy watching soon, or I'll forget how to do
it....hehehehehe.
I think you might need more than an overnight bag if you went from CO
to Canada....but try it.....let us know if your plan works....LOL

Hi Colleen, and welcome to the group!
I hope your surgery goes well and is successful, it sounds like
you're doing great with using a chair. I use a walker sometimes, not
even a wheelchair and that can be difficult enough!
A good attitude and a sense of humour are what we all need, I think!
BTW I'm a single female, 36, no kids, located in England. Not
working.
Brig

Hi group!
New member here. I am an BK left leg amputee (traumatic accident)who
is having knee surgery on the 'real' leg in a week. So I find myself
pretty well confined to a chair at the moment.
It certainly presents challanges in corporate america! But, for the
most part, I am dealing with them.
Just for general information, I am a single female, Kalamazoo MI., 50
year old redhead, mother of 3, grandmother of 7 ... computer
professional.
Thanks for letting me join your group! Colleen/Sayyadena

Hi there everyone! I hope all the guys had an awesome Fathers day
Yesterday! The studio was a bit slow yesterday, hopefully everyone
was out having fun, the weather was great.....lots of people dressed
up looking awesome....my guy Digger got phone calls from his kids but
we couldn't go visiting because I had to work and he wouldn't go
alone, but I made it up to him by bringing cookout stuff back with me
and we had a nice cookout.....surprised him with a cupcake too lol....
He's not my dad but he is a father too. Anyone else want to share
what they did for fathers day? Please feel free to post.
Have a great week!
Karen (wind)

OOOPS, thanks Bill......Fathers Day seems to be sneaking up on me this
year....have to get some pictures posted soon....My dad's gone now,
time gets away from me but I think its been about 3 years now....my
husband died February 19th, 1999.....my dad died soon after that, a
year later I think....I think thats part of the reason I moved out of
Wisconsin, been going to way to many funerals, and alot of other things.
Thanks for the comment on the paintings and photos, Colorado is the
most beautiful place I have ever seen....I'm still awestruck by its
beauty, and tears still come to my eyes when I get close to them and
start driving up into the foothills....its like I see something new
every time I'm in or near them....Glad you got to go up on that
mountain before your accident.....those kind of things stay with you
all your life....the breath taking beauty all around you....that
feeling of awe.
I'm on my way up there tomorrow morning, and right now it 1am the
night before LOL.....gosh, can't sleep for thinking about it...it
seems like forever since I was up in them....I seem to go in
streaks....I paint like a wild woman and then stop, the last time i
painted 7 I think, And Now Where I work, the photo Studio is talking
like they want me to paint some backgrounds.....I can't believe we
Live in Colorado and there is no Mountain Backgrounds for the
kids....all the backgrounds are exactally like the ones in Michigan.
What Part of Illinois are you from? I'm originally from a desolate
part of south west Wisconsin.....well sort of....I guess not by
Colorado Standards....I've seen places here where it seems like miles
and miles with no houses or trees....
Better try to get some sleep....excited about painting......and the
mountains.....I hope to find a waterfall....lol
Wind

Hi wind, I was looking at the photo album and forgot how pretty the
landscape was in Colorado. My ex-brother inlaw lived out there and we
visited them several times before my divorce and enjoyed it quite a
bit. They moved up in the mountains the last two times I was there.
The first time was to help them move which didn't leave any time for
pleasure. I left Illinois on a Friday and came back on Monday. The
second time I was by myself and spent a week there lounging around.
They lived near the peak of their mountain and I was able to climb to
the top and take a good look around. Awful glad I was able to
experience that before my accident. I also enjoyed the pictures you
painted. I think you do a very good job with them!
Hope all is well for you and your having a great week. Don't forget
Sunday's fathers day. Take care.
Bill

Hello to all subscribers,
The University of Nevada, Reno is conducting a study sponsored by CDC
to examine social support in adults with paralysis. People with
paralysis report lower levels of support compared to the general
population. For this study, we are interested in exploring factors
that might explain this difference and how we can improve support.
In order to do this we need to hear from you! Participation in the
study is completely voluntary and all information is strictly
confidential. If you are interested, please visit our website at
www.supportandparalysis.org or call us toll-free at 1-866-317-8431.
Thank you!
Michail Kyriakou

Hello to all. It has been a while since I posted. I came across the
following info and thought some of you may be interested in it. There
is a non profit org that is offering to pay you $20.00 to take their
survey. I copied this off the web site where I saw it....
Eligible subjects will receive $20.00 for their time and effort.
Seeking individuals who use wheelchairs or scooters as their primary
means of mobility to participate in a research study conducted by
researchers at the University of Pittsburgh.
This study is designed to investigate different aspects of
transportation use and the risk and nature of injuries to wheelchair
users involved in motor vehicle accidents. However, it is not
necessary to have been involved in an accident to participate.
I did not take the survey so if anyone did or plans to, please let
the group know about it. I copied the info from... http://upwd.net at
the bottom of the page.
by by,
Diane

AAAAWWWWWW, cute puppy Mike.....I took a look at your photos.
Wind

I have posted the pictures of the portable hand controls in the photo gallery
in a folder I created. email me if you have any questions or comments. Also if
there is newly injured paraplegics that havve questions or concerns about
there new injury I would be glad to tal with them.
mikedixon@...

Hi Mike,
The photo did not appear, as this group does not allow attachments.
But if you could post it to the photos or links section here at the
group, I for one would be very interested to see what your hand
controls look like.
I'm not in the US, but I do use hand controls, and mine are
transferrable/portable too. Would like to see if yours are similar
to mine.
If you have problems posting in the photos or links sections, I'm
sure Karen or Ray can help you. Just let them know.
Brig

Some of you may get this twice. Please DO NOT download any attachments that
come from me in the next couple days!!! I got a worm virus from somebody and
it sends out an attachment email with the virus. DO NOT download my
attachments for a couple days until I get it out of my system. Thanks and I'm
sorry for any inconvenience!!!
Denise
Ashley-9
Conner-4
Destiny-5 Months

Not for me... yardwork is all, and I find that WAY less than
exciting!!! lol
Ray

Hi Group,
My name is Michael Dixon I am a T-12 para. I live in the piedmont section of
NC. I will soon be 33 and also 10 years in the chair. If you are in the market
for
a set of hand controls or thinking about purchasing a portable backup set of
hand controls please look at our controls before you buy. Our controls are a
great way to keep driving if your fixed position control breaks or malfunction,
our controls are great for traveling and using them to drive your rental car. I
have the controls on ebay and will have them on all the time if you want to
purchase a set email me and I will sell to group members at a discounted
price of $175.00 per set plus a flat rate of $12.00 shipping. I challenge you to
find a control that is even close to our controls in price, you will not find a
better built safer control anywhere in the world. I build the controls to fit
you
and your car, so that you have the best driving experience possible. I started
building the controls 7 years ago after two sets of fixed controls failed on me.
I take PayPal and Bidpay, cashiers check, money order and personal checks
*Personal checks will result in an 18-day clearing time before shipment will
be sent.
I am attaching a picture of the controls to this post if you have any questions
or
comments please feel free to email me at either
Mowingman24@... or
Mikedixon@...
Sincerely
Michael Dixon

I was just wondering if anyone had any exciting plans for the weekend
or do you just do the same thing on your weekends. Usually we go and
buy household supplies and grocery items every other weekend. I like
to watch NASCAR so that takes up part of the weekend too. Enjoy your
weekend!
Bill

Way to go wind!!!!!
Bill

Just a quick note to let you know that Wind is moving and will be
offline for a few days. She's found a bigger apt for the same money.
Yippeee

I like the picture on the home page.
Bill

Here's a preliminary petition about SPECT scans and ADHD/other known
neurological challenges. Please visit the site and consider voting.
http://www.petitiononline.com/adhd/
Thank you.

Wind, I know what you mean when you talk about climbing mountains and
looking over areas back down in the mountain. My ex-wifes brother
lived in Denver and bought a house in the mountains which I helped
them move into and it was beautiful up there. They didn't live on the
highest mountain but still to climb up to the top of where they lived
was cool. I enjoyed all the places they took us to go site seeing.
But in a way the mountains are getting to setteled down as like a lot
of places. Killing a lot of natural habitat for animals. After taking
photography last fall I have a more appreciation for things like
that. I'm glad I got to experience that before I couldn't walk
anymore due to my auto accident. Have a good day!
Bill

I was schedualled to work in Nebraska over the weekend.....I was
excited to go and see more of the countryside on this side of the
United States....I grew up in a tiny town in Wisconsin, and up until
my second husband died I never got more than a 7 hour drive from
home.....I NEVER traveled before, but always dreamed of going places.
The photographers told me there is nothing to see in Nebraska, just a
bare flat desolate peice of earth.....I thought it was
beautiful....there were cattle grazing.....horses running and dancing
around the prairie.....and I saw......buffalos.....out on the prairie
grazing lazily....and little baby bufalos wandering around close to
momma....it took my breath away......they weren't in the zoo being
stared at by wide eyed kids......I doubt many cars took much
notice...is it a normal thing to see in Nebraska?
I saw fat little prairie dogs running and playing and wrestling with
each other sort of like puppies and almost like squirrels.....and the
land isn't flat like out in north central Iowa.....everyonce in a
while you look out across the land and its like seeing miles and
miles of flat earth, no trees no buildings.....but what the eye sees
is deceptive, a few miles farther down the road the trees return and
there are houses, little rolling hills.....then everything seems to
disappear again.....
Reminds me of the first trip in the mountains.....for some reason i
was suprised the mountains....or at least the foot hills had a back
side to them.....sounds funny now but photographs are flat....I guess
I expected the foothills to be small, and you start driveing up and
up until you get to the top, but you go up a foothill and there is a
go down part LOLOLOLOL.....oh my gosh there is a down part.....I
always wanted to get on top a mountain and see what was on the other
side.....I guess I'm niave....but I'm learning....
Nebraska was prety, the kids I photographed at work were
awesome....the studio had problems....so much has changed From
working in Michigan.....and to much is the same.
Wind

Awwww thanks Ray, you're a sweet friend.....
.....but Waldo?.....LOL.....Angela doesn't look anything like Waldo
LOL.....but that should get her attention if she pops in.....she did
tell me she was going to post an update on whats going on in her
life, but I haven't seen anything either....and I haven't heard
anything from her in a long time again....did get a couple jokes a

I mean Angela... whatcha doin', Angel? Things going well in your
life? Let me hear from you. Karen, thanks for the job you do in
here. You're a doll. :)
Ray

Happy Mothers Day to All Moms in the club!!!! We hope you have a
super day!!!
Angela, Ray & Karen

thank you so much for your reply - my acupuncture doctor has recommended
herbs too and I am taking them in addition to the medication. However, I am
hopeful - lets see. So far, my body seems to be responding positively and it
keeps me more alert than I would be without the acupuncture sessions - so
although it does get expensive - it is worth it for a while at least! I
don't know what else to do.....

I used acupuncture during the first 5 months of my pregnancy (only once a
week). I too felt better on the day it was done. The acupuncture doc
diagnosed me as "low chi" ... I don't really know what you are asking for
when you ask "does anyone know more" ... why acupuncture might work on N is
as vague as why it works on just about anything. I suspect that due to the
cause of N symptoms (dead brain cells), the acupuncture sessions would have
to go on forever (just like taking pills goes on forever). In other words,
it wouldn't cure you. It certainly costs more than pills, but it feels
safer. Did your acupuncture doc recommend herbs too? Mine did, but I
wouldn't take them while pregnant. Oh, I also went to a doc who teaches at
the local acupuncture school -- I wanted to get someone very experienced
because I didn't have a "normal" problem.

Hi to everyone:
I just joined the group. I am new to the wheelchair world. I need
advice from people who understand about wheelchairs and the need for
as much independence as possible.
I have severe neuropathy, perhaps RSD?, in both feet. I started using
a wheelchair about 6 months ago, based on my physical therapist's
strong recommendation. He admits I may not walk again, as I have a
genetic problem with the bottom of my forefoot that prevents much
pressure in that area. Lifting is also a problem.
So, being in denial about the possibility of long-term wheelchair
need, I purchased a very heavy dinosaur rental wheelchair for $100.00
and started using it 6 months ago. As I am very tall, this thing is
all wrong and is now causing more problems. Also, I have had to
depend on others to haul me around. Bummer!
I am currently looking for a "J5" rated wheelchair. I will be
purchasing it out of my own pocket, as Medicare will not help. It
must have a swing away foot rest. I have looked into Quickie2--then a
salesman said to look into Quickie GP---then another salesman told me
to look into TiLite...I have gotten many conflicting ideas from
salesmen, (who may be biased as they will benefit by my purchase), so
I decided to go to the experts--You! I would appreciate any sharing
of what works for you. Also, where did you purchase your wheelchair
(especially if it was on the internet!) and were you happy with the
service?
In addition, I would welcome the idea of being able to drive again,
even though I am in a wheelchair. What hand controls have worked for
you? Is the response time of starting and (more important) stopping
your vehicle with the hand controls the same as if you were using
your feet? I cannot use my feet except for a few sideway flat-footed
steps. So, does anyone know if there is a "lift" helper that could
absorb most of the weight of the chair as I am loading and unloading
it from the rear of my vehicle? I am not thrilled with the price tag
of the fancy hydrolic lifts used for vans, nor do I think I need
something that elaborate. I currently have a Jeep Grand Cherokee,
with the rear door opening upward toward the sky.
I realize that there are a lot of questions. Any and all help would
be greatly appreciated in my quest to find answers...Thanks in
advance.
Lynn

Hi there Brig! Hi Ray! I've been really sluffing off lately, spending
less time online and more time exploring and working and trips to
Pueblo, been seeing alot of Colorado....itching to go sneak a peek at
New Mexico.....Pueblo is only a short hop from there....I can't
believe how diferent looking the land is out here....everytime i go a
diferent direction I see something new...and animals wandering around
that are supposed to be in a zoo...loose....lol...its so cool...I
could post photos in the club if anyone wants to see Colorado...:)
wind (aka colorado_karen58)
{i hardly ever get lost now...and if i do i see cool things and don't
care if i'm lost lol}

Hi everyone,
I am new to the group and wanted to ask a question about natural remedies -
I have been trying acupuncture and so far have found positive results - I
have been going twice a week for these acupuncture sessions and find that
the days I go are the best days - I am more alert and the cataplexy is less.
Does anyone know more about this?
thanks everyone
Shibani

Hi everyone, another weekend is upon us. Where did the week go? I
always heard that time passes by quickly as you grow older and boy do
I believe that now. Couldn't wait to turn 16 so I could drive, then
get out of high school, turn 21 so I could go to bars, then get
married and so on. Now I could stand for time to pass by more
slowely.
We finally got some rain this morning. I heard that a semi got blown
over not far from the town that we live near. I knew that the wind
blew pretty strong here but not that strong. We even had some pea
size hail with it. Now we have some sticks to pick up in the yard.
There were quite a few farmers working their fields the last couple
of days. That is one part that I miss most since my accident, working
at night in a tractor.
I hope that you all have a great weekend! Take care,
Bill

Does anyone ever get any inner ear pain? I get inner ear pain off and
on and none of my doctors can find anything wrong.
One problem I have is my doctor's are stuck on the belief that "N" is
found in older obese men. After my sleep study, in which showed I
have "N", really floored them because I am in my later 30's and I am
a thin female. So I am not getting much help from them. I am tring to
get to the University of Wisconsin but that is becoming a struggle.
If anyone feels they can help me get some answers to some questions,
I would appreciate it very much.
Thanks,
Lori

We would like to remind you of this upcoming event.
Early Bird Chat
Date: Tuesday, August 7, 2001
Time: 8:00AM - 11:00AM PDT (GMT-07:00)
Rise and shine and come chat with fellow members of the
Narcolepsy Group.
Share your stories, jokes and tricks to get through a 'sleepy'
day.

My Mum is actually on vacation at their home in Spain right now,
though she and my father return tomorrow, so I won't see them until
then. But I did go and tend to her beloved plants, watering them,
and put some birdfood out for the 'resident' birds!
The weather here is wonderful - warm, sunny day, beautiful
for spring! Even in Spain the weather is not so good as here...<grin
Hope we catch up on messenger soon sis, need to have a long girly
chat.....LOL
Brig

Just a note to my american friends to let you know that we are now on
British Summer Time, we have changed our clocks. So there is one
extra hour time difference until you change your clocks - next
weekend?
Brig

Happy Mothers Day To All in the UK!!!!
I hope you have a fantastic day today with family!
Awesome you get to be early on the time change, I think ours in
Colorado is next sunday :)
Wind

-Vicki,
Thank you for your suggestion about the tyrosine. Right now, I am
willing to try just about anything. And thank you for your advice
about what to take/stay away from at certain times of the day. I
have recieved a few responses to the message that I posted, and the
common factor in all of them seems to be physical activity. Thank
you for taking the time to share your thoughts, I was begining to
think that I was the only crazy person who ever considered trying to
deal with this "the other way" Thanks again, and I will let you know
what happens.
Amie

Hi everyone, it has been quiet in here. We are supposed to get some
snow flurries tomorrow morning and then warm back up into the 60's
again next week. We finally got some rain last night and today. A
half an inch but its better than nothing. We are dry here in West
Central Illinois and could use a couple of inches of rain. Farmers
are starting to do field work and gearing up for the planting season.
How I miss those days. We have seen a few turkeys this week. There
are getting to be a lot of them around this area. There also has been
a few deer running around.
I hope that the war doesn't have to go on for to long but it doesn't
look to good for that hope now. I believe in what they are doing over
there but wish we wouldn't have waited so long to start. That gave
them to much time to plan how they were going to react and defend
themselves using our uniforms and such. I can't imagine the things
they have to deal with. I just hope that we can end this quickly!
Hope everyone has a nice weekend!
Bill

My, my, what a quiet week it's been in here !!

In a message dated 8/5/01 8:21:48 PM Eastern Daylight Time,
donka@... writes:

When someone is taking the Povigil is it acceptable to still have
sporatic periods of sleepiness? Does adjusting the dose ( increasing )
help to stop these sleepy periods?

Even on the Provigil, I would have periods of sleepiness. It just depends on
how much and how good I sleep the night before. My dose couldn't be adjusted
cause I was on the highest possible does from the start cause my N is so
severe. You doc needs to adjust the meds if it needs to be.
Denise
Diagnosed with Narcolepsy June 1998

Thank goodness it's FRIDAY.......ooops missed
Friday......SATURDAY!!!! We're already relaxed, sleeping late and
enjoying the day!!!!
I hope everyone has a fantastic Weekend!
Wind

When someone is taking the Povigil is it acceptable to still have
sporatic periods of sleepiness? Does adjusting the dose ( increasing )
help to stop these sleepy periods?
I will be in contact with the doctor tomorrow and I will be reporting
how the weekend went.
My concern is giving him/her this drug if he/she is not responding to
it as well as the the majority of users do. He/she doesn't seem to
have any adverse side effects at this time.
Although he/she has only been taking the drug since Aug 2nd there has
been a sharp decrease in the sleepiness.
The current dose is 100mg each morning. Thanks! Donna

Hi guys and gals, in a mad crazy attemp to permote myself I've
started a fan club. Please feel free to join and check it out. I'v
posted some of my songs MP3s in the file section of my club.. Please
help out this poor broken down Folk singer lol. Take care Wayne....
Subscribe: Wayne_Linger_Fan_Club_and_mailing_list-

I can't believe the weather out here...it can't be normal, but its
like summer most the time...I have never in my life been warm in the
winter, I honestly had the air conditioner on in the car a couple of
days...what a kick LOL...
As to why I moved out here, I would like to expand my personal
business, always loved the mountains...in fact I paint and almost
everything I paint has mountains in them....and not one of them has a
foothill LOL, and I finally had a day job that allowed me to transfer,
so a job was waiting for me....and thats awesome....it will give me
more time for my business and painting...LOL....I have an internet
based business of my own, but the living is from photography....for
now :)...my day job is photographing kids in a portrait studio....I
finally have a fun job I like getting up and going to...once i can
make a living from my personal business I think I'll still do the
studio photography for fun part time...as a volunteer...:)
wind

Hi wind, thanks for replying to my post too. My art appreciation
class is a requirement to get a certificate in Desktop Publihing. I
will be able to design ads and newspaper articles for a newspaper or
do some things like that at home. We got some more snow this week and
a little ice too. My art appreciation class got canceled on Tuesday
night because of that and we were supposed to have a midterm test
that night. I would have liked to gotten it over with that night
because we have spring break this next week and it will be two weeks
before we have class again. Bummer....
So, you enjoy Colorado's weather more than Wisconsin's, your home
town? I know that I enjoyed my visits out there. My exwifes brother
lived there and it was a great place to take a vacation. Especially
when they knew all the good places to see and eat! I really liked it
out there. How did you end up moving out there and what is it that
you do for a living? I think I read it somewhere but don't remember.
I hope that you have a great weekend and an even better next week!
Bill

HI! Anyone in the southern California area interested in going to a
fashion show in Los Angeles (on Sunday March 23rd) raising money for
improving the lives of people with SCI please read the following
announcement. If you know any businesses who would like to place an
advertisement in the program please call Wendy Turnbull ASAP (818-
703-0397).
Kim
Fashion In Motion 2003
March 23, 2003
Join WYNGS in supporting people who are rebuilding their lives after
spinal cord injury. Do it while having a fantastic afternoon at a
unique fund-raising event on March 23, 2003 at The Omni Los Angeles
Hotel.
WYNGS is a non-profit organization assisting people whose lives have
been changed by spinal cord injury. As the Official L.A. Chapter of
the National Spinal Cord Injury Association, WYNGS has been active
in the community for over 10 years, with a variety of programs that
provide vital assistance to people who are coping with paralysis.
Fashion In Motion 2003 is WYNGS annual fashion show/luncheon/silent
auction. It is an upbeat social event, a fashion show that combines
the talents of wheelchair-using models and professional, able-bodied
models. Honorees include Susan Tartakoff, a wheelchair user who has
been making a difference in the community for many years, and Dr.
Sam Britten who has used his talents to make a difference for
wheelchair-users through the creation of the Western Center for
Adaptive Aquatic Therapy in Northridge. The keynote speaker at this
event will be Marcie Roth, Executive Director of the National Spinal
Cord Injury Association. Event MC is David Cruz of NBC4.
Come to celebrate achievements, come to learn, enjoy the music and
great atmosphere. Come to make friends. Shop the boutique and the
silent auction for unique gifts for your friends. Take a chance on
a few raffle tickets and door prizes and you could win a prize of
$1,000. This event is a terrific way to have fun and support WYNGS.
Call the WYNGS office at 818-267-3031 to purchase tickets. The
silent auction opens at 10:30 am, Luncheon and fashion show begin at
1:00. We are looking forward to seeing you at Fashion In Motion
2003.

Hi Bill thanks for posting....you have art appreciation class? Are
you an artist? If so what kind of things do you do? I like sketching
and painting....I got a book about drawing faces, never was good at
that...but its fun.....its a relaxing distraction for me.
I grew up north of you in Wisconsin....but in Colorado now and its
sure getting easey to be spoiled by the nice weather here....this is
the first winter I can remember not freezing all the
time...lol...been really dry this winter here too,
but we are getting snow tonight :)
Wind

Hi everyone, sorry to have not posted for a bit but I've been busy
with school work. One more week till spring break. Yeeeaaaaa! Art
Appreciation...This is the hardest class I've had yet. Trying to
appreciate how paintings and such were were done way back when. It is
interesting in some parts and others are no so. It would also help if
class wasn't from 7:00 to 10:00 at night. But at least it's only one
night a week.
It's been colder here than normal so I am all for spring to get here.
My body likes it above 50 or more. We had one snow that gave us about
6 inches and the wind blew pretty hard for a couple of days but were
never drifted in. Here in the Mid-West Illinois we could use some
moisture be it rain or snow. Its been a dry fall and winter.
I pasted my anniversary of my accident that left me in a wheelchair.
February 18, 1996. Sometimes it seems longer ago than it is. After a
hundred and three days in the hosiptal I got to get out and start my
new life at home.
I hope that everyone is doing well in these trying times that the
United States is going through. I wish we would go do what we should
have done the first time over there and pray that there will be
minimal loss of life.
Take care and have a nice weekend!!!!!!
Bill

Thought I would post a spring looking picture....careful spring is in
the air.....ok, stop looking out side at the wind howling and the
snow swirling.....LOL....Spring is under that snow someplace....yes
it is LOL......don't worry Spring always gets here :)....it won't be
long now.
Karen

Oh, I see now!! I was just curious. :)
Denise
Diagnosed with Narcolepsy June 1998

No, I just had an idea. The owner/moderator lets us have access to the
calendar and add our own events, some groups don't.
I've never seen the owner or moderator posts any messages, where are
they? As for my chat idea, I guess I'm responsible for it, since I came up with
it and the owner/moderators of the group haven't said anything.......
M. Sleepy

Hello all,
My name is Lori and I was just recently (after months of confusion)
diagnosed with "N". It's a relief at least to know what has been
going on. I've had the problem for most of my life, but it appeares
that it has "peaked" in the past 8 months. My immediate family is
understanding and supportive, though my mother and sisters are in the
usual state of denial. No matter how much information I give them,
they always know better. Fortunetly, I'm in my late 30's and have a
husband and adult children (that can be debateable :) ). It's nice to
find that there is a group like this that I can come too and feel
right at home. I've read through the past postings and can relate
completely. I too have found that the more rigorous the physical
activity, the more likely I am to stay awake and remain so for a
couple of hours afterwards. My kids think I'm nuts, but I just
discovered that paintballing really keeps me going. Other activities
that keep me going are activities that stimulate the mind. I build
models (yeah, strange lady) and have found that when I am absorbed in
the model, I can keep going without a "nap attack" far longer than
usual. I have even gone an entire day without a problem.
Almost "normal". Other than that, not much else seems to work.
Anyhey, nice to meet you all.
Regards,
Lori

Was wondering where you were yesterday sis...it's a holiday there
today is it?
Tomorrow night/afternoon is great for me.....I'll be around! (You're
right 3pm where you are is 10pm here......)

I would love to have chats every Sunday morning, kinda early, or
Tuesdays in the afternoon, my Sunday morning got messed up yesterday
opening a studio early, and working a 10-5 day. :( I was just getting
lined up to have chats and be able to go to church on Sundays....
I have to get things done after work around here and wont be able to
get in the chat room until tonight, but tomorrow we could have one in
the afternoon, I close at 2 and am home around 3.....I think that is
10pm your time, how would that be?
Karen

In a message dated 8/4/01 12:40:30 AM Eastern Daylight Time,
sleepy@... writes:

MissGroggy

Are you the list owner on here? Just wondering. :)
Denise
Diagnosed with Narcolepsy June 1998

In a message dated 8/4/01 12:29:30 AM Eastern Daylight Time,
sleepy@... writes:

Sorry, but it will take a little while to catch on. Probably have to give
it a
week or so, I doubt everybody has seen the calendar or read the posts.

Completely understandable!!! Thanks!!
Denise
Diagnosed with Narcolepsy June 1998

Loved the chat we had a couple weeks ago...is there going to be
another one planned soon?
Brig

Chris,
I have Thursdays listed as, Night Owls Evening Chat 7pm-11pm PST.
Like I said earlier, the schedule is tenative at the moment. I only posted the
chat idea and schedule yesterday, so I'll makes changes as we go and after I
gather everyone's opinions.
MissGroggy

I hope everyone has a Terrific day today!!!
Wind

For all of you who have 'sweeties', I hope you have a happy and
romantic day!
And for all of us who don't, let's just enjoy the day anyway!

The Chat times are listed as Pacific Standard Time.
MissGroggy

No plans here, I don't have a sweetie either so I may just go see a
movie or two....
Had a great chat with you guys.....wind, adamwheels, and mike...adam
I hope you got back in the room! Hope to do it again soon!
Brig

Sorry, but it will take a little while to catch on. Probably have to give it a
week or so, I doubt everybody has seen the calendar or read the posts.
I made up the chat schedue only yesterday, so the days and times aren't
sent in stone. But I'm sure it will be fine.
MissGroggy

Hi there! Would anyone like to share what they have planned for the
day of Romance, Valintine's Day this year? I don't have a sweetie
but I'm trying to think of something to do for me this year....So
much has changed since I moved into Colorado.....it was winter when I
left Michigan and now its summer here on February 1st!!! It was up
to 74 degrees and I'm so used to bundling up and dressing for the
coldest mounth of the season, and I drove home to change with the
windows rolled down, short sleeved shirt and Jeans on, it felt so
good!
Snow is in the forecast for tomorrow and I hope we get a
bunch.....but not on the roads, LOL....wouldn't that be cool?
Oh, everyone laughed at me at work today....they think I'm nuts being
so excited about driving to Cheyanne Wyoming tomorrow, to work in the
studio there, but I can't wait! It's awesome I have never been to
Wyoming!
wind

I'll be in the chat room tomorrow at 8am Mountain time, 9am Central,
10 am Eastern time. Drop in and say hi if you can, I'm going to try
to start a chat every Sunday if I can. My computer has been a mess
for a long time, having more and more problems, Ray dropped in before
work last Sunday and got most of it fixed! And I didn't realize the
chat room was fixed too so I never tried it right away! LOL.....I CAN

I just went and nobody is there. :(
Denise
Diagnosed with Narcolepsy June 1998

Hi Bill, Glad to see you in this group too..dooo

Hi there, I just got done talking to Angela and she told me to update
you all.....her and her guy are doing wonderful. She hasn't been
feeling too good, "I've had a bad bout of IBS ...just had a CAT scan
today and then going to have colonoscopy on wed"....Right now she is
on medicine that keeps her from sitting too long in one place so she
said to tell everyone she will post more next week.
wind

I was wondering if anyone had any perdictions on the outcome of the
superbowl? I think Oakland will win but not easily. Its finally
warming up here thankfully. Hope everybody has a fun filled day
tomorrow!
Bill

We would like to remind you of this upcoming event.
Night Owls, Evening Chat
Date: Thursday, August 2, 2001
Time: 7:00PM - 11:00PM PDT (GMT-07:00)
Chat with other members of the Narcolepsy Group.
You can be yourself, share jokes and funny stories, with no
censorship! Come join the fun!

Hello,
This email message is a notification to let you know that
a file has been uploaded to the Files area of the angelsscichat
group.
File : /SCI survey
Uploaded by : kimdand <kanderso@...
Description :
You can access this file at the URL

I think that would be great... but I think you should post the survey
in our "files" section; if you put it in a post, it will soon be
buried. If you put it in the files, then periodically post a
reminder, people can go get it and fill it out. If you want, maybe
we could put a note about it in the description next to the pic on
the home page.
Ray

Well as far as building it ..it has been one aggravation after another..And the
HFH certainly don't know what accessibility is..lol..BUT we have stood the test
(I think) and it's mostly built for accessibility..Habitat for Humanitiy doesn't
build just for disabled and most affiliations are much easier to work with than
the one we had..If you have a affiliate in your area you might consider applying
for a home..The criteria for acceptance is mainly the need for a home and no
other means of obtaining one..This same affiliate that built for my daughter are
in the process of building one for a couple that both work in one of our
factories and their income combined is around $30. per hour.. They base the
house payments on the receipants income..This HFH sets the payments at 25% of
the monthly income..and the loans are interst free..There is usually a very
small down payment.. But sweat equitity is involved and if you're physically
unable to help build the home..others can work the required hours out for
you...Most HFH houses go up very fast but I'm sorry to say that this is one big
botched job and the ground breaking was in June of 2001.....And we're still
waiting.....She should be moved in by March or April for sure...And yes..short
and deaf is a handicap..lol...We have had to fuss and fight to get things
lowered in the home but hopefully other affiliates wouldn't be so backward and
set in their ways....I had an aunt who was deaf from early childhood and so I
know a little about the problems it can pose....She had lights in all her rooms
that would blink when someone rang the door bell.......dooo

Well as far as building it ..it has been one aggravation after another..And the
HFH certainly don't know what accessibility is..lol..BUT we have stood the test
(I think) and it's mostly built for accessibility..Habitat for Humanitiy doesn't
build just for disabled and most affiliations are much easier to work with than
the one we had..If you have a affiliate in your area you might consider applying
for a home..The criteria for acceptance is mainly the need for a home and no
other means of obtaining one..This same affiliate that built for my daughter are
in the process of building one for a couple that both work in one of our
factories and their income combined is around $30. per hour.. They base the
house payments on the receipants income..This HFH sets the payments at 25% of
the monthly income..and the loans are interst free..There is usually a very
small down payment.. But sweat equitity is involved and if you're physically
unable to help build the home..others can work the required hours out for
you....dooo

I go to the chat room once in a while and no one is ever there. It would be
nice if there were schedule days and times, so members could chat.
For example, you could schedule Chats for every Tuesday from 8am to 11am
(for morning people), and maybe a Thursday from 1pm to 4pm (for afternoon
people).
Just a suggestion,
missgroggy

Hey Everyone! Here is the survey I mentioned. Anyone wishing to
participate can copy/paste their answers to me in an email
(kanderso@...). It takes less than 5 minutes to fill out and
can make a huge impact in SCI research.
Kim
The ongoing scientific research regarding spinal cord regeneration
would benefit greatly from input from people who live with paralysis
everyday. I am a researcher as well as a quadriplegic and I see
first hand that there is a big gap in communication between
scientists and people living with SCI. Many scientists have never
spoken to a person with a spinal cord injury and they don't know
what humans are really experiencing when living everyday with a
SCI. When working with lab animals you only know the deficits that
you can see, which is very important, but if scientists are going to
move successful animal experiments to human clinical trials they
have to fully understand what SCI in humans really means. To that
end, I think that people living with SCI have to tell scientists
what functional recovery is important to them, which is why I'm
conducting this survey. It is crucial that people with SCI be the
ones "standing up" for what they want, otherwise able-bodied people
will continue deciding what functional recovery is important and
what is not. If I can get as many people as possible to fill out
this survey and pass it on to others they know, I can create a
network of people with SCI and get a majority view of what they
want. The results of this survey will be used to develop
functionally relevant outcome measures for clinical trials for
different levels of spinal cord injury (for example high quad, low
quad, high para, low para, lumbar). Those outcome measures will be
presented to SCI researchers so they can implement them into their
research, so we need as many people to respond as possible.
Scientists believe hard numbers and that's what we have to give
them. This survey is not funded by any organization; I am
conducting it on my own extra time and effort. Please be assured
that all personal contact information will be kept strictly
confidential and if you prefer to fill out the survey anonymously
that is perfectly acceptable. If you do include contact
information, you will be added to a database to receive updates of
the survey results.
1) What level is your spinal cord injury and what year did it
occur?
2) What gain of function would dramatically improve your life?
Rank the following functional recovery in order of importance to
you, 1 being most important and 7 being least important:
____ A) arm/hand function
____ B) upper body/trunk strength and balance
____ C) bladder/bowel function, elimination of Dysreflexia
____ D) sexual function
____ E) elimination of chronic pain
____ F) normal sensation
____ G) walking movement
3) Do you think exercise rehabilitation is an important aspect
of regaining function?
4) Do you currently have access to any exercise
rehabilitation? Describe.
5) Name:
Address:
Phone:
Email:
Age:
6) Any further comments or suggestions.

I agree with your former post. Exercise makes me feel better too. Time awake
should be used carefully like money in the bank; we use is very carefully.
I'm a tennis player and I experience "runner's high" afterward. For about an
hour to an hour an a half later, I have lots of energy. Right after that
magic time, I crash.
The sports drinks are a necessity for me to keep the slow flow of electrolyes
going in me. I use Emergen C, a powder mixed with water. I drink about a
gallon of water mixed with this powder. Also, branched chain amino acids is
a help while exercising.
If I don't play tennis, I drag around the house all day. I have no energy and
w/o stimulants, sleep 13-16 hours out of 24. Of course, don't ask me about
my messy house. If given a choice, I always pick tennis over house chores.
I have tried to replace tennis with vigorous household chores. It never has
worked for me.
I have have multiple sleep disorders and also fibromyalgia. Without the
endorphins from tennis, I'd be sleeping and hurting all the time.
Good luck to you all.
vickithesleepytennisplayer

I think you should give it a shot posting the survey....And i think
its awesome all the things you have accomplished. I have seen people
with very small injurries or handicaps....just give up and want the
government take care of them....but I have seen both
extremes...sometimes its there attitude that lets them give in...but
more often it its the spirit or spunkieness deep down inside people
that don't seem to take no for an answer....I've seem some normal
people do amazing things.
Wind

There are a number of "sports drinks" - ~ electrolyte solutions -
being marketed to all Americans such as Gatorade. Gatorade has now
created what they call the Gatorade Sports Science Institute where
they are suggesting that some of the best athletes in the world are
using Gatorade products to improve their sports performance in ways
that Gatorade is suggesting is objective science, that is, these
athletes after they fuel up with Gatorade and are measured later,
their performance is improved. It also seems that some of these
athletes are paid money for their endorsements.
How do you react to "sports drinks"? What sort of impact do "sports
drinks" have on you? Good? Neutral? Other?

Welcome to Angels!!! I'm glad you joined....thanks for sharing what
happened with your daughter.....How long will the house take? I am
not handicapped but I would love having a house built just for me.
Well, being deaf in one ear and being short can't count as a handycap,
I never hear the door when people knock, and everything in the house
would have to be so I could reach it...
The equal treatment thing is a problem sometimes, even in this modern
day I am still suprised how people who have various handicaps are
treated like children or ignored or talked down to....I dated a deaf
guy a while, and I never even thought of him as having a handicap and
we had some really terrible experiences deeling with sales people and
computer people....I was shocked....I grew up in a small town and I
got my eyes opened when I moved into a city and saw what things were
like outside a town where everyone doesn't know everyone else.
The bladder trouble I understand....I have no bladder control because
of a hysterectomy I had right after my husband died....they knicked
the bladder during surgery and I had to use a cathader a couple weeks
afterwards, there were alot of complications, moreso because my
husband died several weeks before and I was three rooms down from the
bed he died in....and I was in a deep depression....before I went in
for surgery I made my sister promice to look out for my son Martin if
anything happened...I don't even remember that.
Thats been a while now and the past has heeled, the doctors told me
the bladder thing would improove.....but it hasn't much, I had three
seperate days not long ago that I had normal bladder function all day
long....it was so awesome....but its back to not working again, and
always leaking....I have tried everything I could think of to eat
drink and do the same things that I did on those days and nothing
works, I just wish I could figure out what I did right those days, LOL...
Well, anyway, welcome to the club and I hope you love it here like I
do...post often, we would love a topic for a discussion!
wind

Leslie,
I wish I could do a little excercise. I have no energy whatsoever and
having 3 kids is really hard enough on me right now. I'm glad it seemed to
help you. :)
Denise
Diagnosed with Narcolepsy June 1998

Thanks for the invitation.....My interest in SCI is because my daughter's car
accident 20 1/2 years ago left her with SCI 5-6.....She has done very well. She
was 18 at the time and had just graduated from high school....We was in the
hospital for about a month and then rehab for 4 months...She waited a year and
then went to college and got her BFA and MA ......She drives a van and is in an
electric chair...She is presently living with me awaiting a home being built for
her by HFH.....But maintained an apartment prior to that....I'm a real battler
for accessibility and equal treatment....I would like to see progress made in
research for the cure of SCI or any amount of recovery....To me the function
that would seem the most helpful would be the bladder and bowel function as it
seems that everyone battles infections so much of the time and they can be the
leading cause of poor health all around....But I know that they are at the very
end of the spinal cord and we would have to start at the top level of
function....And for those with higher injuries I'm sure that being able to
breath on their own would be their top priority....dooo

I just want to talk about how exercise helped me. My N symptoms went
from too mild to worry about to very worrisome after I had jaw
surgery 3 years ago. I had been an avid international folk dancer and
Hungarian dance performer. I also did exercise tapes at home. But I
stopped having the energy to do the exercise tapes. Then I had a few
very scary times of extreme fatigue after only 10 minutes of walking.
I thought I had CFS. The less I exercised, the less I *could*
exercise. Of course I also gained weight, because I would eat to stay
awake. I continued to go dancing, but I dropped out of the performing
group and started just sitting and talking at the social dances. Then
it finally hit me. I had become depressed because I could no longer
dance. Dancing was my most enjoyable thing to do, and whatever was
wrong with me had taken my fun away. I also wanted to get pregnant,
and at 37 years old I knew I could not support a pregnancy without
muscles.
So I researched CFS more and decided either I was or I wasn't, but I
had to try to at least get my back and abs strong enough to support a
pregnancy.
I also decided that I was too sleepy to make myself exercise. I had
started even being too sleepy to go to be social at the dances. If it
were up to just me, I would never move again. So my husband and I
decided to hire me a personal trainer to come to our house. It was
one of the best decisions I've ever made. She worked with me slowly
at first, finding out what I could do. By the time I got pregnant (5
months later) I was performing dance again as well as being a very
active participant in my normal dancing. I wasn't much thinner, but I
was a lot stronger.
I *hated* having to wake up to get ready to exercise. But whether I
wanted her there or not, she was going to be ringing my doorbell. And
I'd have to pay her for her time even if I was asleep. I would wake
up about 1 hour and 10 minutes before she arrived so that I could
hurredly eat some protien. Then get a few things done and get
dressed. Sometimes I went back to sleep between eating and
exercising. Sometimes I would go back to sleep after exercising (I
was a self-employed contractor working from home, so I set my own
hours, max of 30 per week).
Exercise didn't change my level of sleepiness. It did change my
attitude and sense of control. I strongly recommend any N using some
of his/her precious awake time to be active.
-- Leslie G.
--- In narcolepsy@y..., djohns1973@a... wrote:
My docs tried telling me the same thing about doing more excercise.
Yea right!!! I didn't even have the energy to open my eyes more less
go out and excercise.

It was alot of work to earn my Ph.D., but I felt like I just did what I had to
do. I was injured in a car wreck (not a mile, but probably only about 10 miles
from my house). The longer I've been injured and the further I've pursued my
career, the more I feel like I need to make a difference for all the other
people out there with SCI. My research is actually focusing on hand function
after cervical injuries (in animals). Most of the research in the past has
focused on thoracic injuries (because it's "easier"). A side project I just
started a couple months ago is a survey of people with SCI asking what area of
functional recovery (dependent upon your injury level) could lead to a dramatic
improvement in their lives. This is in reference to regaining increments of
functional return rather than waiting for something that will fix everything at
once. (It's actually much more likely that researchers will be able to develop
treatments leading to "small" amounts of return (small in their eyes, large in
our eyes) faster than a magical cure of everything). If I posted the survey
here would anyone be interested in filling it out?
Kim

Hi, Bill, and welcome. Congrats to you too for your educational
achievements. Thanks for posting and I hope we can get more
discussion going with relation to sci.
Ray

In a message dated 7/28/01 12:11:56 PM Eastern Daylight Time,
gompf@... writes:

When you are denied a
nap in preparation for driving, ask your husband "So you would rather I get
in an auto accident and possibly put everyone in the hospital when a simply
nap could make everyone safer?" Remind him how very, very lucky you are that
you still have a driver's license...

I was kind of in this situation with my dh like a year ago. We only have one
car and he was working 2nd shift at his job and he wanted met o take some
cigarettes to him or something stupid like that. I told him I wasn't going to
chance driving cause I was too tired. He jumped my case about it and I hung
up on him. Needless to say, he never called back. Well, about 30 minutes
later my daughter came in screaming and holding her arm. She fell where she
was playing and I HAD to take her to the ER and have it looked at. It was no
problem though cause the whole time there, I heard, "mom, please hurry,
please hurry". So she had no trouble keeping me awake and I was also scared
at what happened to her. Needless to say she broke her wrist. She had a very
small break and a fracture. So I did end up taking my dh whatever it was he
needed since I was already out. It made me mad though that he reacted like
that.
Denise
Ashley-9
Conner-4
Destiny-4 Months

Congratulations on achieving your Ph.D. ... I know how difficult that
is. How did you incur the sci? I hope your research plays a role in
one day helping to "fix" some spinal cord problems.
Ray

Jeff,
Thanks!!! It is still tough sometimes living with N. I just be myself as
much as I can. I'm really extremely close to my in laws, so if anything ever
comes up about my N, then we do actually joke about it. I can say something
to the effect of well, you'll never know what it's like to have this. Now, my
dh thinks he may have it. Sure thing!!! whatever!!! He's just plum right out
lazy!!!! LOL My docs tried telling me the same thing about doing more
excercise. Yea right!!! I didn't even have the energy to open my eyes more
less go out and excercise. The first doc I went to cause at the time I had to
go to my primary doc first then get a referral and stuff then I could go to a
Neurologist, she took blood and said everything i snormal that I just have a
busy life and schedule. What's that crap? LOL So I went back a couple months
later and saw a different doc and he then sent me to see a specialist. My
neurologist diagnosed me even before my sleep study was done. Then I started
on meds and have been on them since 1998. Of course I had to stop them last
August due to pg'y and now I'm still bf'ing so I can't take it yet. I can't
wait to get started on my Provigil again. This guy at work was diagnosed with
N and is on Provigil but his are only 100 MG and he rubs it in all the time.
LOL Can't wait, can't wait!!
Denise
Diagnosed with Narcolepsy June 1998

Welcome everyone! Any of you from England, and are male and
single??? LOL - just kidding!
Have a great time here!
Brig

Hi Mike,
Glad to meet you, I'm Brigitte (call me Brig) from England. I don't
have any SCI but I have another disability that requires me to use
hand controls with my car. Mine are portable - that is, they can
transfer easily from car to car, which helps because here in the UK
there is a government scheme that will lease out cars to disabled
people in exchange for some of our welfare benefits. These contracts
last for 3 years.
Are the portable hand controls generally more popular in the US? Or
do most people use the fixed or mounted controls? Can you point me
to pictures of examples of each so that I can check we're talking
about the same types of controls?
Feel free to add me to your messenger list. Would love to chat more!
Brig

jeff,
i recently began provigil as well, and am moving from
dex to provigil. headaches have been a problem, and
are getting better. i have been told headaches are a
side effect, and one that if you can tough it out for
a short time out, will make it worth while.
sue

hi denise-
your message really moved me. i know what it's like to
have to deal with unsupportive friends and family.
some of my relatives treat my narcolepsy like a joke
or some crackpot fake medical excuse to be lazy. it
really hurts me that they would actually think i am
just trying to get away with something- ie avoiding
work and social situations- instead of taking the time
to really try and understand what it is like to be
someone with narcolepsy. even though i have gone
through a rigorous process of medical diagnosis they
always offer their own opinions..."oh you should eat
more protein and you'll be fine"...or "if you
exercised more you would have a normal energy level".
ultimately you have to get beyond the hurt and try to
combat their ignorance. i have found that the best way
to do so is through very open and honest
communication. my advice would be to sit down
individually with each person that is causing
difficulty for you and tell them with a very sincere
and nonthreatening tone that you are very hurt by the
way the have reacted to your condition. it is best not
to sound accusatory....use lots of "i-statements" as
in "i feel very hurt when you say that i am lazy" etc.
often people don't realize the effect of their
statements...and if they really love you then they
won't want to continue hurting you and will hopefully
be motivated to empathize with you and take the time
to learn more about narcolepsy. of course there are
no guarantees...but in my opinion if someone hurts you
you have to let them know and once you have done so if
they continue to do so then they are not someone you
should waste any time or energy on. i've had to learn
this the hard way, cutting people out of my life that
i thought i was very close to. but you gotta look out
for yourself in this world, and there's no point in
surrounding yourself with intentionally hurtful
people!
well i hope this helps. know that you have the support
and understanding of thousands of we narcoleptics and
continue seeking support in forums like this one. best
of luck to you.
**on an unrelated note, i started taking Provigil for
the first time yesterday and got a splitting headache
that lasted all afternoon. has anyone else experienced
this?? i hope it doesn't happen again bc i have been
so excited about taking Provigil as opposed to an
amphetamine derivative....
-jeff

Hi Karen,
Thanks for the invite into the group. I am a 32 year old T-12 Para. I saw a
message from Bill where he was telling about his accident being closer than
one mile to his home. The same happened to me. When I crashed the motorcycle
I was riding I lay in a side ditch beside the road. I could turn my head to
the right and see my house. I spent 51 days in ICU the first 10 in a coma. I
broke every rib in my body. I punctured both lungs and also tore a hole in
my aorta. I almost bled to death from that tear alone. I under went heart
surgery 27 hours after being hauled to NC Baptist Hospital. I had to lay in
the bed on my stomach for 14 days to regain enough strength to undergo the
17 hour back surgery I needed to fuse my spine in 3 different areas. 1st at
T-4 then T-12 and Finally L-1-2-3. I am a metal fabricator by trade. I
currently build portable hand controls, mainly geared for use by person that
are Para, are MS and any disease that affects the use of the legs to operate
a car. You can find my controls on EBAY I sell them for $200.00 rather than
ripping the people who need assistance to live and the government and
insurance do not want to help them. Most other portables cost from $300 up
depending on where you get them. I would also like to point out to other
users of hand controls that a set that is called THE PEDAL MASTER is
probably more dangerous than trying to drive by using one hand to move and
press the pedals with your feet. I am not saying this because this is seen
as compition to my controls, rather a FYI for all concerened as I am not in
business to get rich, I am doing what I do to help as many people as I can
regain there independence by being able to drive without having to spend
from $300 for portables or up to $1000.00 for a set of standard mounted
controls. And god forbid you need an EGB (Electric gas and brake) system you
are looking at a bunch of money not to mention the instalation bill. Well
enough about me and my controls for now. If you or anyone else who reads
this wants or needs to contact me you can do so through email at
mowingman24@....
Sincerely
Mike
On 1/18/03 9:08 AM, "Karen <windwhisper42@...

Wow this is awesome a bunch of new members all at once, I've already
mentioned some of you, but I would love to welcome johnsonb64,
chairman1082, horst_roedel, and deane1012!!! Welcome to Angels!!!
I hope you can post something about yourself, and if you have any SCI
related questions or comments for discussion we would love to get
something going on the message board, and I hope it helps answer
questions or concerns some people may have....
Don't be shy....Everyone I have met here is very nice. We're all
friends you've yet to meet!
Thanks one and all for joining!!! We hope you have an awesome time here!
Karen

Hi Amie,
I have found great relief from narcolepsy by a specialized chiropractic
technique taught by the National Upper Cervical Chiropractic Association
NUCCA) which you can access at www.nucca.org .
I have had narcolepsy, diagnosed at a sleep lab, since I was a young
teenager. I am now 65.
When my upper neck is aligned properly, I have no cataplexy whatsoever. As
far as sleep attacks, they do not bother as long as I get good nights sleep.
I work at a stressful job, I am a NUCCA chiropractor.
The problem with this procedure is that there are very few people who know
the NUCCA technique. In my own case the general manipulative techniques did
not help me.
It has been the answer to my problem. I have not taken a drug for this
problem for 35 years.
Hoping that this is of help to you.
Dwain Ingram

Leslie,
I've showed my dh and my mil stuff online about N and it's like they just
don't care. If I'm at my in laws and I start to dose off, she'll hit me on
the arm and tell me, "if I can't sleep, then you're not going to sleep". My
dh can never go to my appts with me cause of his job. My mil has been with me
but I can't remmeber if she's ever actually gone back with me or not. It
really stinks that they don't stand behind me on it, since they'll NEVER know
how I feel at all times. The people at my work(I'm a waitress at Shoney's)
are more supportive then dh family. I've gotten used to it, but it still
hurts inside.
Denise
Diagnosed with Narcolepsy June 1998

Hi there Bill your right, there hasn't been much SCI discussions
lately, our founder Angela has been having alot of challenges in her
life lately and then when clubs became groups the chats we had sort of
faded out. I think alot of people were having trouble in the chat room
for a while. People are still here and if you send messages they are
friendly....I haven't met anyone in the club yet who isn't nice. :)
Been hoping to find members who like chatting, I'm glad you posted,
and post often, I think of all the members as friends, and I love
meeting people, and have met alot of people I first talked to online.

Hi everyone, my name is bill and I'm a quadriplegic from a one car
accident back in 86. You know the saying, most accidents happen
within 1 mile of your house, and I'm living proof of that. I'm
single, living with my parents and am going to school for a degree in
Desktop Publishing. I have already recieved a certificate in
Accounting.
Looking through the messages there seems to be only a few who post
messages very often and you seem to be really good friends. I am
looking forward to meeting you and getting to know some new people.
Thanks for inviting me to your group. I hope to chat with you later.
Bill

Denise:
Have you tried brining your husband to your doctor appointments? Has he read
anything about N? My husband knew me before my N hit bad, and he saw me go
from doc to doc looking for an answer. By the end, he was coming to the docs
with me because we wanted to get pregnant and we realized whatever I had
could get in the way of that. Because he believes the diagnosis and because
I've given him scientific information for him to learn about the disease, he
is supportive. He may not be happy that I have N, but he understands it is
something I can't help...
-- Leslie

Just before I got my N diagnosis, I was giving up on Western medicine and
went to an acupuncturist. He was very enthusiastic that he could help me (I
went to a teacher at our local acupuncture school; I felt I needed someone
with a lot of experience). Then I became pregnant and learned of my N. The
acupuncturist calls it "Low Chi" and he wanted me to take a number of herbs.
No matter how hard he tried, I wouldn't because I was pregnant, but had I
not been I'm sure I would have taken the herbs to see if they worked. I did
let him use the needles on me, and I always felt better for at least a
little while (sometimes a few hours, sometimes a day or more). Trying to
combat the fatigue of a pregnant narcoleptic isn't easy! In any case, I
think an acupuncturist who also knows about the Chinese herbs might be the
kind of thing you are looking for.

Hi there mowingman24, Thanks for joining, I hope you like it here.
I'm Karen, I'm able bodied, and joined this group from a friends
invite, I have alot of friends some with sci and others with other
disabilieies. Our founders Angela and Ray made me a co-founder.
I recently moved out of Mishigan and into the sunny state of Colorado,
and now exploring it slowly going to diferent photo studios for work.
Please feel free to tell us about yourself.
Hope you love it here
Karen

Hello,
Can anyone possibly suggest any other groups that might be of
interest re: narcolepsy?
I would also like to thank Andy for the information on Natural
Remodies, I don't know if you recieved my
E-mail?
Does anyone else have any suggestions on alternatives to prescribed
medication?
Thank you for your help.
Deserate for answers- Amie

Janna,

I would say that you should find a sleep doctor before these problems get worse. I take provigil and it works really well. My family is really surprised how much energy I no have...

Make sure that when you sent the appointment, that you take your husband in with you. My Doctor told me that if I would not take the pills then he would have my drivers lic. pulled. They look down on us that drive with Narco...

Chris