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I don't know about you all, but i keep pretty
good records, but I still receive bills from 5 years
ago. You really have to keep up with them Randy,
because ultimately you are responsible. The
Neurosurgeon's office didn't file their claim correctly and
tried to get over $8,000,00 from me. I checked into it
after hearing from a collection agency and found out
they were wrong, the surgeon's office didn't know the
collection agency was involved because they farm out their
billing. I refused to pay, so they threatened to give it
to an attorney, I told them I look forward to
pointing out to him/her "their" mistake. Most of the
collection agencies think they can shame you into paying
even though you did what you were suppose to do. Keep
up on it Randy, they are ruthless! Know the rights
in your state for your responsibilities.
<br
stupid along with everything else. I finally told one
Hateful Woman, my spinal cord has been injured but my
brain is as sharp as a tack.

Not crazy at all..................in fact I dream of
the day.........--- Donna Ha <donnahtud@...

Hi Karren,i think i got you on the Backup
power,just like it sounds.So far i have never lost anything
due to a outage,but makes sense to me,will check into
it Thanks.<br
when i was on the backboard after my wreck,i guess i
was on it for a couple hours before being put in a
bed.It looked like a scrape or something right on my
tailbone.It could of happened in the wreck too,noboduy really
knows.But anyways it stayed red,then started getting redder
then oozing etc.Well under it after i had got home was
a hole abotu a inch deep that no one knew was
there.It wasn't until a nurse friend looked at it that we
knew about the hole.The nurses and Dr.s at rehab just
was trying to get it to heal up like a scab i
guess,sure glad i couldn't feel.Anyways i went to my local
suirgeon and he cut out the bad stuff and we packed it
with guaze for about 2 months,all healed up now.I
can't reeally say it was from the nurses there not
doing there job,but more like lack of training in the
area.They did roll me all the time,but i always liked
sleeping on my back,so i was partially to blame.I never
actually saw the sore since it was on my back,plus unable
to feel it,just never paid any attention to it
myself.My ex girlfriend and parents know more about it than
me.We called the Ins company about the Bill i just
got,there looking into it for me,so who knows.What is weird
is that it was over 2 yrs ago and i'm just now
getting a bill and from a collection agency,no
explanation as for what the bill is for or anything,just a
Dr.s name,seems fishy to me,almost like there trying
to get more money?.I'll let you know what i find
out.Talk to you later,Randy

I have a friend who uses a pacemaker so I have this crazy
idea...wouldn't be cool if there was a device that works for the
spinal cord like how the pacemaker works for the heart? Some kind
of microchip that is implanted into the spinal cord where it would
act as a bridge that connects the electrical signals from the brain
across damaged nerves so that the signals gets through and we would
regain the functions in our lower extremities again. Or maybe even
rebuild a robotic spinal cord! Crazy idea huh?
Donna

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

Karen, I am glad to see you won your case, but I
am also very sorry you had to go through that. I
apparently was in a very good hospital, because I heard
"pressure relief" every ten minutes and was woken every 2
hours to turn. The very last thing they would have were
sores! It was a very COMPLETE rehabilitation. I think it
may be what needs to be looked into....the whole
package, the teaching, trying different methods,
discussions with other paras and quads, PT, TR, OT as well as
nursing. <br
hospital to help others coming through with possibily an
easier road?!I go to the hospital about once a month, (i
have to get my pump refilled anyway) and I always
check to see if there are any SCIs on the floor, I know
the girl who can when I was in there answered a lot
of questions for me.<br
soap box----<br

If your looking for a group that for support and understanding then this
group if for you..

Ok Randy, will try to explain this to you...but I
am not that good at it...LOL<br
up will keep the computer going for up to an hour if
you lose power and will protect against the damage
you had done. It comes with surge protectors. But
they can get pricey. Ask at your local stores they can
tell you what they have and how much. I have one and
am so glad. Nothing like being in the middle of
something and losing power and everything you had been
working on.<br
Guess they just sren't training nurses like they
should. Chuck's would not heal so they had to do surgery
on it. A real pain (won't say in the
butt)...LOL<br
please think about talking to someone. I know I harp but
they have to learn that they can't get away with it.
You pay out all that money for insurance and then
only have so much in benefits. If the hospital gets
paid for stuff they do wrong, then they are using your
benefits up. I got a bill from a collector and told them I
am not responsible for that part of it and they keep
sending them. Got it again and they said they were
turning it over to a lawyer. I said fine, please do. I
would love to go to court. I like a really good fight,
especially when I know I am right!<br
care and will keep you posted. Hope the local papers
get a hold of this. Would love to tell them about
that place.<br

Karen, congrats on the settlement!--sounds like
good news and I know you are relieved to be done with
it...Donna, three boys!--three times the joy :&gt;)--I am
envious. All the best to you...Randy, first I thought it
was you hit by lightening--lol glad you and
everythingis alright. Same thing happened to us with
lightening, though there was a storm to go with it--what a
hastle! Ya'll take care...Betty

matt
share with us what happened and how
In a message dated 6/18/2004 7:22:06 AM Eastern Daylight Time,

I know exactly what u mean, to me God did this to me for a reason, not really God, cause I caused my own accident, but for some reason I do believe I am a much better person since my accident, which was in 1974. I broke neck in 3 places, c 456, back in T 2&3, and am so grateful to beable to do what I can. Have 3 kids, 1 before accident and 2 afterwards and now 4 beautiful grandkids which I keep every chance I can. Sorry to have gone on and on, but I do feel Blessed. Later, Theresa in Louisiana Wheel Chair
stiggysos <stiggysos@...

In the past,I have found discouragement in particular situations
until I compared the condition of my life to others less fortunate.
Just as a fresh breeze cleans smoke from the air,so a grateful spirt
removes the cloud of despair.It is impossible for the seeds of
depression to take root in a thankful heart.My God has bestowed upon
me many gifts,and for these I will remember to be grateful.Too many
times I have offered up the prayers of a beggar,always asking for
more and forgetting to give thanks.I do not wish to be seen as a
greedy person,unappreciative and disrespectful.I am grateful for
sight and sound and breath.If ever in my life there is a pouring out
of blessings beyond that,then I will be grateful for the mircle of
abundance.
I will greet each day with laughter.I will smile at every person I
meet.I am the possessor of a grateful spirt.
Today I will choose to be HAPPY. Matt
Date of Injury 6/16/2001 time 10:45am T12

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

Hi all, I posted the following a couple of weeks
ago. It was around the time when you had to go to
messages to see the most recent ones because they weren't
on the homepage. I thought I would post it again in
case anyone missed it. Sorry to be redundant. :)
<br
Many states are trying to get SCI Research bills
passed. These bills use a portion of monies collected
from traffic fines to fund research. NY has one called
the Richter bill and NJ just passed the SCI Research
bill, but we're still waiting for the Governor to sign
it. Anyway, I have some contacts for anyone
interested in helping out in other states. All that was
required of me was writing letters to state legislators.
I've noticed there's a few Ohio people in this group
so I'll post those contacts. I also have addresses
for CO, SC, DE, MD, MN, MO, OR, NJ, RI, SD, & TN. Let
me know if anyone wants the information for one of
these states.<br
co-chair<br
45601<br
Massieville Rd<br
45601<br
about these bill go to
<a href=http://www.spinewire.com target=new
click on the news section.

In the past,I have found discouragement in particular situations
until I compared the condition of my life to others less fortunate.
Just as a fresh breeze cleans smoke from the air,so a grateful spirt
removes the cloud of despair.It is impossible for the seeds of
depression to take root in a thankful heart.My God has bestowed upon
me many gifts,and for these I will remember to be grateful.Too many
times I have offered up the prayers of a beggar,always asking for
more and forgetting to give thanks.I do not wish to be seen as a
greedy person,unappreciative and disrespectful.I am grateful for
sight and sound and breath.If ever in my life there is a pouring out
of blessings beyond that,then I will be grateful for the mircle of
abundance.
I will greet each day with laughter.I will smile at every person I
meet.I am the possessor of a grateful spirt.
Today I will choose to be HAPPY. Matt
Date of Injury 6/16/2001 time 10:45am T12

Sorry to hear that Randy. It reminds me of the
saying, "if it wasn't for bad luck, I wouldn't have any
luck at all." Well, at least it was your modem and not
you! Good luck getting through your e-mails.

-hello cecilia, sorry it took me so long to reply. I've been out of
town. The bike that I use is a bike at the rehab Institute. I do
believe the bike is about $15,000. That's shorts are paid for by
Worker's Compensation and are $800 so I'm fortunate in that way. --

Howdy Everyone,i'm finally back online,lightning
got my modem Friday afternoon around 5pm,but get
this,all lighting,sun was shinning bright and not a cloud
even close,but lightning got me.Also no rain,but did
get 3 tenths Saturday nite.I have 43 emails now to
read,so i will be busy for a while,later,Randy

Hello to all. Check out this remote control lawnmower. It is self-
starting. There is also a short video clip. This lawnmower can also
be equipped with an electric generator attachment for running power-
tools or used during a power-outage, etc. And get this..... when you
look at the picture of it, look close.... it is on a wheelchair
frame. It even uses wheelchair tires.
http://upwd.net/lawnmower.html
Thanks,
Diane

Hello Cate,<br
complete quad, 11 years post injury. To begin with, I'm
not artistic <br
much better than me. Nevertheless, I believe everyone
is unique in some way and by time you'll find what's
best for you. But, let me tell you one thing, don't
let others tell you what you can or can't do. So,
forget about that "TPI" crap.<br
days, (especially for Randy and <br
sweetcorns)<br

I am currently trying to get my left ankle to pick up. I've tried
electro shock and it has help but it only turns the foot in and not
out. Is there a specific place on the leg/foot muscle I need to
place the electro pads??

Hello gang! Sorry I missed the chat. I'll try to
get there this Friday. I am a c4-c5 incomplete quad 3
& 1/2 years post injury. I seem to be in a stage or
phase where I feel stuck. I want my life to move on,
but it won't budge. Any suggestions? I was retired
from my pencil-pushing job and classified as "TPI" -
totally and permanently incapacitated. Unfortunately, I
am not artistic. My mother has been trying to shove
a paintbrush in my mouth and told me to paint. She
thinks painting, writing and drawing comes naturally for
all paras and quads. I think you need talent to do
those things. <br

Actually my little boy just turned eleven months
old on the 1st....can't belive he will soon be a
year....and i have a ten and soon to be six year old
also,,,,all three of which are boys.....LUCKY ME....well i
sure hope to chat with ya soon...Donna

Here is some of the information about those electrode shorts. The
name of the Company that I got mine from the is called "Therapeutic
Alliances Incorporated. I'm not sure if they have a web site, but
they probably do. Their address is 333 North Broad St. Fairborn, OH
45324. (937) 879-0734. I'm not sure of what you call the bike and I
will have to get with my physical therapist to find out. I know the
price of mine was $800. I'm fortunate that my insurance covered it
but I'm not sure if other types will. Hope this helped to. Rick

website
click:
http://www.musclepower.com/

The best thing is an ergy2 F.E.S. stimulation bike.
It send electric shocks into your legs so your kegs
actually peddle the bike.
I have a leg peddle machine it is ok for circulation
and spasms but your leg muscles are not working out
the bike is working out!
Use a standing frame but the one where you can move
your legs,
Links:
http://www.musclepower.com/
http://www.southwestmedical.com/AB1588000/showdetl.cfm?&DID=7&Product_ID=54463&C\
ATID=15
The best thing is my Lord Jesus who has provided and
taken care of me. Do not stop believeing if you do
not see results of prayer immediately. This is a test
of faith and I have been taken care of. I will walk
when my lord decides. And I do not need stem cell
surgery. My faith shall heal my damage spinal cord
not stem cells. I love my lord and I thank my lord
for my struggle. I trust him, love him, know him and
most of all believe in him!

WOW Floyd. I can relate to every word...great
poem, very touching and so true. I have tried to write
poetry but each attempt has ended up in the round filing
cabinet, so I am jealous. I can't get past ...There once
was a girl from Nantucket..;)

Of God and Pain.<br
desire to walk,<br
poor guy.." they say to friends,<br
until the end."<br
right?<br
look down and these legs I see,<br
"Is this really me?"<br
out,<br
wrong,<br
complete."<br
clouded with dispair.<br
dream,<br
bad I sometimes cry,<br
die?<br
get back on my feet.<br
me,<br
touch me,<br
cannot hear me,<br
day soon He'll call me,<br
free...<br

Hi,
I'm not sure if anyone has posted on this before, but
what are some good leg exercises if you're paraplegic?
My boyfriend uses an exercise bike, but I'm just
wondering if there are any specific models that are good,
or if there are any other forms of exercise.
thanks...

Hi Cindie, <br
night. I will get in there one of these days and say
hello to everyone, I promise.<br
complete para post 11 years now. I was a passanger in a
pickup that went off a cliff. Among several other bad
injuries, I completely dislocated my spine. <br
going to post my first poem here so you can read it, I
hope no one minds. It's just kind of how I've felt
about life since the accident. I'm not a negitive
person by any means, and am extremely independent (work,
drive, etc). So just so everyone knows, I'm not one of
those guys that spends most of his time crying in his
beer (so to speak). Anyway, I give you the poem, and
hope you like it.<br
back!!!<br

I'm telling you...if i had 30 minutes on this
puter at a time...i might actually know whats going on.
Did superquad make it in? I haven't seen him on line
so I hope he's ok. I think he started a new job...or
actually same job different department. Well, my little
baby keeps trying to get to the keyboard so I better
get going. I hope eveyone is doing well and I hope to
chat with all of you soon. In the meantime, you all
have a nice week...bye for new...Donna

Hi everyone,
I have been a member of this group for awhile. I'm a c7 quad 4 years
post injury. I was injured in mountain biking accident. Since my
accident I spend my spare time trying to help others with sci and I
try to donate money SCI organizations. While surfing the net
yesterday I came upon a website about a high school athlete named
Carl Riccio who was injunred in 2003 during a wrestling match. Carl
is quadriplegic now. His family and friends have set up a special
needs trust fund for his future care and some of it will go towards
the SCI research. If you can help a little or a lot it will a long
way. To find out more about Carl visit
http://www.carlricciotrust.com/. Thank you all

Enjoyed the chat last night, Bryan it was real
nice to meet you, hope to see you posting here.
Cindiers and Dorla really enjoyed chatting...I believe
today is a record breakker, 99 now and maybe hotter,
don't know how people without a/c can take it, must be
very tough, take care...Well if Ed is very very good
and nice to me I'm going to take him to see The
Runaway Bride on one of his days off--Tues or Wed--now
ain't that nice of me??--he is very
excited...lol...Betty

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

Hello Everyone,The tractorpulls are not until
tommorow nite.But i'm just going to town tonite.So far no
rain on the radar.I would say you are right Karen
about the club.Well hope we all get some rain whether
it's for flowers,yards or crops,or worse yet to
drink.Heard Maryland may run out of water in 30 days,scary
thought.Well maybe see you all tonite,Randy

I'm not sure I'll make the chat tonight. I hope
everyone has a good weekend. Have fun at the tractor pull
Randy and if you get some rain sent it here. We're
having drought warnings. Of course, all I have to worry
about is the flowers in the backyard. :)<br

Don't think you have to worry about this thing
shuting down. I have only seen him in here once and have
been here for a year I think. As long as we come in
here it should keep up. If not we will make another
one. No big deal. Hope you have a great time at the
tractor pull, Randy. Sounds like all kinds of fun. But to
be honest, I hope you get RAIN!!!<br
all tonight<br

I recently had a botox shot for my left arm to help reduce tone or
to try anywho. It normally takes four weks to kick in, i have only
had it for one yet I already notice a difference in my arm. A small
difference but its only been one week. I think it varies from person
to person as far as effects it might have, but it is an expensive
option. I tried it to see if I can get more movement in my arm. As
for other things that might help just reg. weight bearing can help
with both as well. Once the leg begins to shake bear weight on it. I
dont know the extent of his injury but you can put your weight on it
as well. Botox relaxes muscles and my dr supports it as well as my
therapy workers. I can keep you updated on the shot if you like?
shane

Howdy Cinders,i will try to make it to Chat
tonite,i'm skipping the fair tonite and maybe just go to the
local watering hole.Too Hot at the fair,talking 98
today and humid.We do have a slight chance of storms
through Sunday then cooling doen to the mid 80's,i will
freeze after the hi 90's lol.<br
tractorpull at the fair,it got rained out Monday,so you know
i will be going for that,unless it rains out
again,wouldn't supprise me,always rains on the fair.<br
never seen JamJam in here since i joined about 4-5
months ago,hope he is ok too.I wonder how long the club
will be left on here if Jam Jam is not visiting?.I was
just wondering if we shouldn't have a back up club
planned in case this one shuts down unexspected?.I think
there can be co- founders from what i have read on

Hello Gang.<br
chat tomorrow night. Firday at 9pm Eastern Standard
Time. I will try and not oversleep this time. Last week

-hello winklestx!! I am a C4 quadriplegic and I'm fairly new to my
injury as well. It's just been two years. It sounds like you have a
great outlook and attitude and that is the only way to be. I have a
lot of things to be thankful for as well. Just when you think you've
really got it bad, all you have to do is look around you. There are
people who can walk and are living a much more miserable life than
you and I ever will. Like you I was a very active outdoors person.
I was a racehorse jockey for 15 years and had a business training and
horses to ride so I stayed outdoors all day. I broke my neck
climbing over a fence. Weather is definitely going to be a factor in
your life now as I'm sure you can already see. It seems there is
really only about four weeks out of the year where it is comfortable
for me to be outdoors.
I started getting return like you speak of all my left side and
really only the electroshock therapy was offered to me. You will
continue to get a lot of return of feeling probably and much of it
will not be very pleasant. I get a lot of buzzing in tingling and
aggravates me daily. Another form of exercise that I was getting was
riding an exercise bike. They put on some electrode shorts that cost
$800 . Then, they have to wrestle you over onto the bike. It's not
very comfortable and I was usually only able to ride it for a few
minutes. It took almost 45 minutes to prepare to ride the bike and
only after a few minutes my muscles were completely tired. I have
not continue with the exercise like I should have. I have a friend
who does the same thing is he can ride the bike for 15 minutes. It's
nice to see that you have such a wonderful attitude and things should
only get better for you from here. Feel free to e-mail me privately
if there's anything I can help you with. Sincerely, Rick -- In

Hello,<br
I was wondering how or where do I find your poetry?
I looked at the posts and cant find it. I really
would love to read them as well. I thank
you..<br
you back. I have been here for a couple months I
think. But it was great to find the place. Really enjoy
the site,wish JamJam was around. Sure hope he didnt
die or anything. Meet him in New Mobility and hadnt
seen him in so long over there. Never have seen him in
here. hmmm So it was great finding this site.<br
name is Cindie from Minnesota, SCI T11&12 incomplete
para. post 23+ years. And you? I'm glad you are better
and I got the chance to meet you. Maybe will get a
chance to talk to you in chat on Firday at 9pm EST. Take
Care.. <br

Hi again,<br
him in the parallel bars with legs braces on?I
started with the standing table from there to the bars,It
takes<br
with<br
don't<br
<br
would help.It helped me alot,but that was me.Everyone
is different.I don't want to make<br
me.Take care.<br

Hi am also new to this group. I shatterd my c3/c4/c5 and had an
uneven bruise on my spinal cord in a vehicle roll-over Feb. 4th. of
this year. I just recently was released from a rehab center and now
do outpatient rehab 3 times a week. I am a 23 year old female who
was very very ative with the outdoors yet now I am limited. However,
I do make progress daily and I have much to be thankful for. I have
trouble with my left side, my arm has tone I have to fight but it is
not too bad, i recently had botox shot in my arm to maybe relax it
enough to see if i can get more movement and eventually be able to
work the tone out. Does anyone have any info on specific excercises
besides electro shock?

Hi guys!<br
The one with the firm foam in front (the only way to
transfer from a ROHO!), the foam is molded to fit body
shape, and the air filled cushion in the rear half. The
best part about it for me is I keep the air low in the
back, so I sit better in my chair. I used to have my
entire seat more "bucketed" with the butt lowered quite
a bit. It gave me alot of stability bending
forward, but seemed to strain my lower back a bit. So we
raised the seat to be a little less bucketed, and I felt
like I was going to fall forward. The cushion helped.
I have always had the Stimulite (plastic honeycomb
type) Really liked them, but now decided the Nexus is
better. <br
cast, in the old days. It is hard plastic, molded to
your body, (from chest to lap in front, higher and
lower in back.) which fastens with firm velcro
closures. I, too, could have it off while in bed. My first
surgeon, in Florida, didn't feel they were necessary.
(said with the rods bolted in place, my spine was very
SECURE.) When I transferred to AZ 16 days later, my Dr.'s
here insisted, so I wore it for FOUR months! Was
hospitalized a total of three, then cheated alot when I got
home! The name is TLSO (stands for Thoracic Lumbar
Sacral Orthotic.) Since those are the spinal areas
immobilized. If there are higher level injuries (cervical)
then they get the lovely "halo". A large appliance
which is bolted to the skull and then braced on
shoulders to immobilize the nexk area. TOO MUCH FUN!!! They
drive you crazy!!!!<br
and late nights, was gone 12 hours for work today,
pretty average, so I am headed to BED!!!!<br
friends.<br

Thanks Erice,
I did hear the iGlide was a bit heavy when you come to putting it into the car
as well,
Regards
Simon
http://www.apparelyzed.com

-welcome to the group!! I am new myself and have not been really
active on the board yet. This Smurf girl from the UK is kind of
bringing things to life around here. Welcome! I'm looking forward
to getting to know everyone. Rick -- In

Well, was a little surprised at the weight of the
things. But guess we can deal with that. He isn't sure if
he likes them yet or not. The guy put them on and
then he says, " OK stand up." DAH...like we have been
doing this all along. Had to get it through his thick
head that we won't be using them to walk. Maybe down
the road we can train his muscles to kind of walk but
highly doubtful. So, he gets off the table and is a lot
shaky. The guy syas, " He doesn't have much upper body
control." Wonder what he thought we have been doing. This
is the first time chuck has stood without the
standing machine. So naturally it is going to be a bit
shaky. But after we got home he stood for a few holding
onto the pool table...we knew that wouldn't move on
him...LOL We will keep working with them. But they seem a
bit hard to work. And the thought was for him to be
able to stand at work for a while to relieve his butt
and back. Now we are thinking about getting a
standing chair. Anyone heard of those? There is one that
is built by Levo. Going to check that out.
<br
<br

Hi Kathy,Hope you get along great with your
Jay.Everyone is different and you have to do whats right for
you.I have found this to be true very often.My Rehab
was only for 3 weeks,i wrecked the 20th of July,was
home on the 22nd of August,talk about a fast
recovery.All my friends thought i should have been put in the
pool,standing board etc,none of thaty happened at rehab,til out
patient therapy,and it was only the standing table.No
water therapy.I feel i should of went out of state for
rehab now,seems from what i here there is a lot of good
rehab centers.Craig comes to mind,never heard a bad
word at all of there.Thats is a weird about the Chair
Rep and motorcycles,i would ride tommorow if i
could.Well got to go,Going to the county fair,Fair food here
i come,Later,Randy

Not sure about that one...do you have any specific questions?

Ok, the verdict is in, I went with a Jay again, I
have a Jay active, and a Jay 2, this time I'm getting
a plain Jay. Although it weighs more, I have heard
very few stories about bottoming out on a Jay. I left
the finally decision up to the advice of the plastic
surgeon, he had a resounding JAY! I think part of the
decision has to relate to complete or incomplete, without
any feeling, I wouldn't know if the cushion went
flat. Maybe next time I'll try the Roho.
Thanks!<br
experiences, my therapists and the whole program were great.
My program was almost five years ago and onlt lasted
for 8 weeks, but the therapists were very
knowledgible and quite helpful. The addressed everything and
some, and trained as many "helpful hands" as you
wanted. I learned my ADL's thru swimming, and anything
else I wanted to try (within reason). One girl had
horses and the rec therapists went riding with her
several times. I hope you all can keep in touch with the
centers and possibly help by continuing to give them
feedback so the people coming through now have a better
experience. I keep in touch and they even call whenever their
is a younger, or female SCI to just let them know
they can continue a very active
lifestyle.<br
His was 12 years ago. I thought of you when he told
me that, he's even gotten back on a bike, go figure.
<br
later.<br

Hey Ness!

Welcome to the group, we are a mad bunch here! hehe I'm Sarah aka Smurf and I'm 20 years old from the UK! I'm a incomplete para post 2 years.

I'm sure we'll have a natter at some point in time!

Love Smurf xxx

Hi Murat,the shell we are refering to is what we
had to wear for 12 weeks i think til our backs healed
up.They wrap around your chest and back and keep your
back supported.I was alowed to take mine off when
laying down,but if i was settting up,i had to wear
it.Very hot,restrictive in your movements,specially in
the arm pits and belly area.Towards the end of my
healing,i did take off while in the shower so i could wash
my back and belly good.not sure the clinical
name,think it was a TFO or something like that?.Take care
Randy

Sorry to hear about your sores. I actually don't
know that much about cushions just the one's I've
tried and I probably don't know enough about them. :)
I've never used a Jay so I'm not sure how long they
last. <br
melt Murat-Noreen

I was really far into debt.
Like Most I was in Financial dispair.
I could not seem to get ahead no matter how hard I tried.
Untill I found this place.
http://easedebtnow.place.cc
If you are in debt they can help you out.
Check them out today I did.
This email was sent because you joined our group.
If you do not wish to recieve any emails, unsubscribe.

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

Your body will not develop resistence it is primarily
that the body is continously changing. Don't take too
much zanaflex it used to make me feel horrible and
pass out at times for like a quick 10 seconds. Any
standing frame is not good. I have one that moves my
legs when I push it with my arms. Even a leg peddle
machine is good. Something like an A.P.T. (Active
Passive Tainer)
APT: http://noboundaries.tv/
Standing Frame:
http://www.southwestmedical.com/AB1588000/showprod.cfm?&DID=7&CATID=15&ObjectGro\
up_ID=104&OVRAW=standing%20frame&OVKEY=standing%20frame&OVMTC=standard

Liz,
I take Baclofen but find that it makes me very tired (20mg, 4 times a
day). I had a doctor who wanted me to get the Baclofen pump but it
wasn't something I wanted to do. I'm not totally happy with
Baclofen, either. It does help but I still have many spasms which is
annoying. I'm going to talk to my doctor about other options, some
of the medications that the other members have mentioned (that I
didn't even know about). I got rid of my doctor who wanted me to get
the pump (not just for that reason). I don't like when doctor's are
set on one way and aren't willing to listen or try out other options.
Take care,
Lauren

SOrry Luis, I couldn't open the attachment. It's probably just my email though.
I'll try doing it from the group website. Anyway, I believe the doctor has
prescribed zanaflex, so we're going to get that rx filed soon. I'm just worried
about getting on too many drugs, and developing a resistance. Do you think this
is possible? I also realky hate the idea o fa baclophen pump. I don't think
it's worth it for our situation.
So you use a standing frame? I saw one at the wheelchair shop the other day.
How often do you use it? Does it seem to reduce spasms? Was it hard to start
using? What level of injury do you have? I've been thinking for awhile we need
to find more ways to work out, but since moving to San Diego, it seems like it's
impossible to find a place that can do assisted workout for a quad. If anyone
has any ideas on that one, I'd love to hear them also.
liz

Hello Gang, (I liked the term, but the originator
is Cindiers)Hope you're all fine with the desert
heat, it's not any cooler here; I'm about to
melt!<br
personalities here and how i wish i could join you on a
Friday/Saturday night hunting.(only if i wasn't so far away!)No
doubt you'll find what you're looking for.<br
dont't have ICQ but I'm pleased to read your messages
here. Actually, you remind me of my mother; supporting
Chuck in everyway. Without my mother's support and
care, I wouldn't make it. And I'm not as independent as
Chuck, to say the least. By the way, I used to envy
paras but having heard that crushing things feeling;
i'm no more jealous! <br
wellcome. You seem to know a lot about cushions; I've been
using Jay (Standart, active, J2) for 10 years. Not to
put the blame on the cushion but i've had pressure
sores many times. What I'd like to know is how long can
I use a Jay cushion; when do I know it's outdated?
<br
deppressive ones, please. <br

OOPS, I hadn't read Noreen's report on the Roho
when I posted that last message (open mouth insert
entire leg). It sounds like she is having much better
luck with the Roho than I've had. I didn't know they
made one with foam in front, that seems like it would
make it better. Sorry Noreen, I didn't mean to
contradict ya.<br

I want to thank all of you for all the great
ideas on the TOUCHY SUBJECT. You have really been a big
help. We are going to try some of them out this
weekend. More time then to work with things.<br
the Roho or Jay...chuck has a roho and we haven't had
any trouble with sores. The only sore we have had was
caused by the hospital and not getting the right care. I
sure wish chuck could have had a better rehab. Sounds
like he could have learned alot from it.
<br
Chuck had one too. They teach you stuff while you are
wearing it and they don't think about the fact that
things are going to be sooooo much different when it
comes off. Sometimes I wonder if they really know what
they are doing...LOL<br
It is great to have this place to ask my questions
and not feel like a total fool.<br
stay well<br

I take Soma but found Valium as best for back spasms. I am not a DR , and
this is only my experience- may not work so well for you.
Di in FL

Been on vacation for a short while, and then Ed's
aunt died and we have so much going on, we are her
closest relatives and have to handle everything. So hi
again to everyone, if I haven't met you before I'm
Betty, from Ohio and glad to be back here posting on
this board--a great group of people who help each
other so much--like fr'instance--if you're ever up
Mackinac Island way there is a supburb paved 8 mile trail
around the outside of the island--all you gotta remember
to do is dodge the horse patties--(no autos
allowed)--lol...Take care, Betty

Hey Group,
Is anyone on medicine for spasms? If so, which one? I'm trying to find an
alternative to a baclophen pump, as the doc thinks that's our only option.
Personally I think the body may have just become somewhat immune to the current
dosage of baclophen and trying a different Rx might be a better option. Has
anyone had to deal with this? What are some good alternatives to fix spasms
that constantly interrupt daily life?
liz

Hi Kathy,<br
sit on a low-profile Roho but recently I switched to
a Nexus Roho.It's foam in the front and has a two
section low-profile roho in the back. I like it because
it makes transferring easier and the back has two
valves so you can really adjust the air. The foam in he
front definitely supports my legs better and it makes
sitting in a ladylike position (lol) much easier than
with the traditional Roho. My friend uses a Jay and
she's constantly checking the gel so I don't know if
it's really less maintenance. It's easy to tell when
the Roho needs air-I just press my hand on the
bubbles before transferring and I can feel if it's low on
air. Roho gives you a pump & repair kit. (I forgot
what level you said you were, I'm a c6/c7.)Take
care-Noreen

Hi Simon,

You might want to check out this site

http://carecure.atinfopop.com/4/OpenTopic?a=tpc&f=6734073541&m=9094043272

Kim

As for the logistics on Bowel Movements, I
actually have a very large bathroon (17 ft x 8 ft) so
space isn't a problem, but I actually transfer onto my
toilet and put my legs up on my chair, this makes me
more relaxed and gives me more
stability.<br
discuss these things, because anyone other that other
paras or quads would think I was absolutely insane.
(not that they're too far from the
truth):-)<br

hey hey, just thought id tell you guys about this free debt consolidation site
that reduced my monthly payments by damn near half, no more worries about bills!
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I posted this on Spinalcordinjury, if you dont want to be a member anymore just

Hi all,
I was wondering if anyone in here has tried the iGlide wheelchair, and
if so, was it any good.
I would be also interested to know if any Quads have tried it, and if
they could control it ok.
Thanks
Simon
www.apparelyzed.com

Hi all, <br
automatically ordered me a Jay active cushion. I have only had
one breakdown and it had nothing to do with my chair.
When I was getting ready to order a new cushion my doc
said the Jay has less maintainance, ok what's the pros
and cons of either. I have been told the Roho is
significantly lighter, any comments?<br

Do you drive a Lemon instead of a car?
Get a free auto warranty quote.
never pay for major car repairs again.
we will help. check us out
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This email was sent because you joined our group.
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Hi Karen,Nope on the rain over the weekend,went
all around us but none here.We did get a couple
little showers last nite,rained out the tractorpull i
was going to at the fair,but we could of had it
here,always rains on the fair or in town.Ok on your
nephew,and cap and gown,been so long i forgot what they wee
called LOL.<br
program,i too have great difficultys doing it,i need help
transfering and doing the whole process.Most of the problem
is my small bathroom,plus my chair doesnt support me
much,i fall all over trying to lean over to reach the
area.I think if i had a shower wheelchair with some
padding i could possiably do it myself.They showed me how
in rehab ,but with that big plastic shell i had to
wear,i couldn't lean over enough,so i never actually did
it there.I can't even tranfer to my shower bench by
myself either,small bathroom and can't get up beside
either to transfer.I don't own my house so not much of a
chance of remodeling.Someday i hope to move out to a
more accessable home,but first i need to get back on
feet financially first.Well hope you get the answers
your looking for,may even give me some ideas,Randy

Hey KarenKay, <br
subject, but a necessary evil. You do it the same by
yourself as someone else would. Glove up, K-Y jelly and
insert finger and roll in a circular motion until things
start coming down. This is how I go about it. Is he on
bowel meds? I stopped them right after being released
from rehab 5 years ago. Some people say they make this
easier. <br
for....hope this helps. Personnally I felt tremedous freedom
when I was able to take care of this alone, the way
it's ment to be, ha ha.<br

Hi back!<br
that I posted here are still there, on the very first
page of messages...<br
"My humble view" and the second is under "Oops, I cut
the bottom off that last one". I have a few more but
would hate to bore you with them, they are mostly
venting and bitching about pain. I always write when I'm
really depressed, and it often shows. <br
really looking forward to getting to know you all
though, and sharing life's experiances, both good and
bad. I have a friend here locally that is a para whom
I met when I was 1 yr post. He was 3+ years post at
the time and really helped me deal with life, and
taught me easier ways to do 'para stuff'. I'm trying to
convince him to get on here, he is a great inspiration to
me and I'm sure he would be an assset to some of you
here as well. Well I'd better sign off before I write
a novel again..lol<br

i was there. i got moderated for disagreeing with the owner. he doesn't like anything controversial and pretty much controls the topics and discussions. no thanks - freedom of speech means more than that to me. Dave

In a message dated 5/15/2004 11:12:02 AM US Mountain Standard Time, chris1h23@... writes:

This group has been around for over a year,and we have grown to over
1300 members,If you check the membership on the group you will notice
almost all have information on there profile.
No,Were not a sex group were here for support and understanding..We
don't get graphic in our talks and we try to have the messages have
content..This is not a message board to just chat about nothing..There
many others that you can join for that..There are many polls question
and database to help get to know each others better...Please don't
join if your just a lurker and a devotee that only see the disabled as
a fetish cause were human being and deserve to be treated like human...

Hi Floyd,<br
think it looks pretty cool, although I'd be nervous on
steps. My sister called the Hotline and J&J sent me an
information packet and a customer survey. It's mostly
mobility needs questions.<br

This group has been around for over a year,and we have grown to over
1300 members,If you check the membership on the group you will notice
almost all have information on there profile.
No,Were not a sex group were here for support and understanding..We
don't get graphic in our talks and we try to have the messages have
content..This is not a message board to just chat about nothing..There
many others that you can join for that..There are many polls question
and database to help get to know each others better...Please don't
join if your just a lurker and a devotee that only see the disabled as
a fetish cause were human being and deserve to be treated like human...

Thanks and I will email :)
I think that only among all of us will be able to help one each other
and change the world for disabled people.

I am not too sure how to approach this question.
But I have to ask...Does anyone have any ideas on how
you go about doing digistim for the bowel routine? I
mean by oneself? Chuck is getting so independent and
that is the one thing we can't figure out. Our goal is
to have him independent and on his way. But that is
a major road block. Any help you can give would
really be appreciated.<br

Hello This mans name is Walter Bartnott and he is willing to help you. He said that it is ok for you to write him anytime at walterbartbarnott@... take care and God bless you.

Hello,my name is Sandra and since I was a year old and three months I
have been a disabled person due to a car crash accident,I am 33 years
old,single and never married,I love music,reading,art and traveling.
I have had a very active and almost independent life,since 1992 I am
a Private English Teacher and I have also been a Disability issues
advocated.
I am having a little difficult time because I am trying to be
independent from my parents because they want to move out of the city
where we currently live.
I must say I live in Baja,I am Mexican,but I am trying to find a way
for immigrating to USA or Canada in order to improve my life
quality,I know many people can think of me as someone who should stay
at her Country but I think we are human being and we deserve the same
opportunities than anyone else (everybody) for finding a safe
future,especially if we live in a Country where being disabled is
almost like being a second class citizen.
In my Country there aren't jobs for disabled people and the
opportunities for even studying are none!
That is why I am a self employee English Teacher,I work at my home
but now facing the moving of my parents the issue is that I need to
find a place,a safe job and starting a new life.
Sadly my parents aren't supporting me and they have said I will fail
and I will have to go with them and live as they want,they are good
people but they are having an old mind about what life is nowadays,I
love them and respect them very much but I can't live with them
forever!
I am not the most experienced person but I have plenty skills for
working in commuications,marketing,webdesign and more,please if
someone could give me a little help about an affordable place for
living and other job issues I will be thankful,I don't have too much
money now because my salary is low (I earn depending the students
coming to class every week,if my students are 9 I earn 90 dlls per
week)
I developed my online business and also my website for disability
issues:
English/Spanish courses and translations:
www.english-spanish-services.biz
Disability Issues:
www.wheelsforindependence.biz
Thank you for any advice!

No you are not alone with those butt feelings.
Chuck, my hubby, is also a t-12 and he has them alot. He
says it feels like he is sitting on glass and drives
him nuts. And then being a guy he gets to feeling
like "things" are being crushed. It really is awful.
But thank goodness it doesn't seem to be happening as
often now. He is also almost 2 years post. He takes the
Nuerontin too but not too sure it is doing too much lately.
They have adjusted the dose a few times. Might be time
to do it again.<br
either so would like more info too. I am always looking
for things to help him. Just want him to be as
comfortable as I can get him. There is enough to deal with
since all this happened and the pain and spasms are not
helping matters. <br
everyone.<br

hello grope,
i am quarda at c5.pls tell from where i can get full
guidence for sex for quadra people and some clips.

Hi
I have just joined your group, I am incapacitated due to a spinal
injury
Ness

Check out this new wheelchair concept!<br
href=http://www.msnbc.com/news/285231.asp
target=new

Hello Everyone,<br
to see how everyone is doing? Hope your all doing
good. I'm hanging in here. <br
getting more rain and the crops are growing good now?
Hello Betty how are you doing? Havent gotten any jokes
from you lately,so was thinking maybe you are on
vacation. I surely hope you are well and things are going
good? Dorla I hope your doing well and your daughter is
doing good. Have to check on that tip you mentioned if
I still have trouble getting into chat.
Thanks.<br
poems in here? I heard about them and asked if I read
them but didnt know where to look at them. Hope to get
to know you also.Sorry to hear about all your pain.
My name is Cindie, I am a paraplegic also T11 & 12
incomplete, post 23+ years now.<br
Welcome back to Geri,I dont think we meet but I have seen
your posts in different areas. You seem like a
remarkable lady. Sounds like you had a nice vacation, a very
busy one that is for sure. Glad your home safe and
sound. <br
us, come Firday as well. I really enjoy chatting with
everyone and getting to know all of you has been great.
<br
I sure do hope hs is well. I've been here for a
couple months (I think) and havent seen him. Hi Jam Jam
(James) If your reading in here, I hope you are well and
doing good? Sure would like to see you sometime. Take
Care.<br
Take Care.<br

welcome rick,
nice pictures. i'm a bit more tame - just an engineer with honeywell. nothing very exciting - except of curse, life itself.
if you wander this link far enough.,,.. you'll find out more than you ever wanted to know --
another quad,
dave c3-4 incomplete 1967

In a message dated 5/3/2004 3:37:02 PM US Mountain Standard Time, manetopics2000@... writes:

Hello everyone at spinalcordinjury!! My name is Rick. I am a 33-
year-old male who is a C4 quadriplegic. While I'm not going to call
it an anniversary, today marks two years since my accident happened.
I got my pants legs hung while climbing a fence and fell to the
asphalt breaking my neck. I'm very blessed with a wonderful wife who
keeps me living. It's hard to believe that that is the way that I
was injured considering I used to be a racehorse jockey. At the
bottom of my profile I have a few links listed of some of my sites.
One of them has a lot of winners that I've ridden over my career. I
hope you enjoy them and I am looking forward to chatting with you.
Sincerely, Rick Ruhge

"My doctor said I was paranoid...
well, he didn't actually say it,
but I could tell he was thinking it."

That's hysterical !!!

Hi cate555, <br
the poetry. God and I are still having an argument,
but I know that sooner or later he'll come
around...lol<br
bedrest situation again due to pressure sores. Venting
anger is SO important. I've been a para for 11 years
now, and usually vent thru poetry or just expressing
feelings on notepad on the computer. It may not work for
everyone, but I find it to be a great release. Try it
sometime, and let me know how it goes!<br
care,<br

I'm just looking into getting a hand cycle and I'm trying to find
different places to find them.Also people who have a hand cycle I
would like some info on how they are.If anyone would know of any way
of getting one financed I would like to know .Wellthats all I'm
wanting at this time..I greatley appericate all the info you guy's
have given me in the past.I get more info from here then a
doctor .Well guy's thank's for all the info.

Thanks Jim for the info. I've signed up and hope it can give good information.
On another note, I hope someone out there can help me. I'm looking for
something fun to do as a short "vacation". I live in San Diego and wanted to go
on a cruise to Baja, but that doesn't seem to work. Anyone have any ideas on
accessable travel, events that might be fun to do. I'm sick of the dinner and a
movie routine, and nothing else seems to be duable, especially with a 300 lbs.
electric wheelchair.
Any ideas would be greatly appreciated.
Liz

Hi dkosker..<br
until last summer when it just stopped helping with my
pain. I was on it about 3 years and took 6 pills total.
It didn't help with my chronic pain in my gut
(nothing has so far), but it did help with the burning
pain in my butt. Since it has stopped working, I
started on Pamelor. I've heard from other people that
they had trouble getting off Neurontin because it made
their spasms worst, but I didn't have that problem.
Anyway, good luck with the Neurontin!<br

Hi everyone! Floyd, It is so nice to see you back
in here again. I loved your poetry a lot. I was
wondering where you were. I still have interesting
conversations and deals with God. He usually ignores me which
is good because most of the time it is just anger
inside of me that needs to be vented. I am a c4-c5
incomplete quad (3 1/2 years). I think I am going ok.
Welcome back!

<a href=http://www.froglegsinc.com target=new

Liz,

Go to http://www.stemcellresearchnews.com you can sign up on their mailing list to have updated articles sent to you weekly. It has worldwide coverage.

good luck. Jim

Hi Geri,<br
XTR because I am loving it, my rep says these are the
new casters, they are out in front further and swing
out wide. I am in the yard all the time or on the go,
takes a little getting used to but can,t beat the
smoother ride through the terrain outside. <br
have a pump, put in 9/95 and wouldn't change that
decision for the world. I tell people it saved my life and
that's not too far from the truth, my spasms were that
bad! I am at 540 per day and have been for about 2
years, I still have some spasms, but that gives some
tone to my legs. How often do you get yours
filled?<br
<br

Hello Geri and All,glad to see you back,was
wondering where you were,sounds like you have been
busy.Funny about the phone left in your chair,i do the same
all the time,think i would learn to look before
leaving.I'm a pack rat too,when i leave i want to set up for
anything that may happen.<br
as bad as most of you,mine seeem bad to me,but
nothing like all your descriptions.I'm not sure where i
read or was told about spasms decreasing in time.Mine
seem to be caused more by a tickle than anyhting it
seems.<br
naa.Right now i think i can do without the supspension,but
would like a set of Frog legs to try.Heck my chair is
only 2 yrs old,so i don't see a new chair for a good
while,unless this falls apart,and i doubt it will,at least the
frame won't.I do think the back will be wore out where
it hinges within a year.<br
all,hard to reply to all the messages and it takes up to
much space to reply to all,so sorry if i missed a
few.Have a great weekend,Randy

Someone mentioned that other countries are far ahead in the research/cure than
the US. How do you hear about these things? I've tried following the research
as best I can, but things get so hectic sometimes I don't read up as much as I
should. I'm just curious where do you get your information, and why do you
think the US is so far behind?
liz

Please,Please moderate this message board... my virus checker caught
a virus in a message from this message board. Please do something or
I will be leaving this message board, it could be a good board if it
wasn't for the spam and messages with infected virus's.
MJ Hopper

Hi again, sorry it's been so long since I've
posted any messages (I think since December or so?). At
any rate, I've been a para for 11 years now and have
gone thru just about every medical problem/procedure
that exists. I'm really into outdoor activities, work
full time, drive, etc., (when not in bed from pressure
sores).<br
from anyone that wants to talk.<br

A late reply or question to your message randy. But educate me about Frog Legs.
I've never heard of them...Dorla

RIGHT JAY_GAY SOME THINK BEING GAY IS A DISEASE. TO ME IT IS NOT MORE A DISEASE THAT AN SCI.

LET'S JUST BE A LITTLE MORE TOLERANT OR OTHERS IGNORANCE.

BITTERNESS AND HATRED CARRY YOU TO AN EARLY GRAVE

Hi Carolinaonwheels! I used an XTR demo chair for
almost a month, and also the Boing, from Colours. I
really liked the XTR. I have alot of lower back pain,
and vibrations cause more spasms, so the Dr. gave me
an Rx for a suspension chair. It has been approved.
My supplier says they are re-designing the front so
the casters are a bit more forward, apparently the
chair will be much more stable with the change. I do
ALOT of forward bending, yard work, etc, so that
concept appeals to me. I am waiting to actually order
mine until this change is made. They think it may be a
couple more months. I am getting a really pretty blue
one. The only thing I will miss is the extra room
underneath, that I have in my current chair, Eclipse
(Colours) I use the hammock type thing under (for
everything) besides purse, I use it for garden tools, and
just about anything you can think of! Often times I
get into my truck and find that my household portable
phone is still under the chair. ( I almost always carry
it there when I am home) I am also getting the Frog
legs.<br
been to San Diego (flew)(live near Phx., AZ) and have
driven (alone, of course)to: Laughlin NV, Flagstaff,AZ
(about 160 miles) TWICE, Sedona, AZ (100 miles) and am
in the middle of a busy season for work. So when I
get home at about 7:30 p.m, I am exhausted. In fact
this weekend is my "vacation at home" I slept in,
lounged in the pool, and went shopping. Plan to sleep in
AGAIN Sunday, since I have really been running on
empty..<br
spasms and overall tone would not allow me to transfer
safely, and my legs were so tight that the inside of my
knees got red spots because they were pressing so hard
against each other. (cathing was a nightmare) I held off
as long as I could. Now I reget waiting. Sharon
(also on this board) also has one. Hers is recent and I
think she is still working on dosage, etc. Sharon....
how are you???<br
to increase. MY pump is at 450 micro grams per day,(
a year ago I was at aobut 275-300) and I need to UP
IT, BADLY! I started taking neurontin for the
tingling and burning (T8, incomplete) , and have found it
to help spasms immensely! Dr. doesn't believe me.
She thinks maybe the tingling and buring is soooo
severe that it is causing the spasms (due to pain) my
lower back spasms quite a bit, in fact it usally tells
me when I should take another neurontin) My dose was
getting way over the recommended (3600 per day, they
recommend 2400, max), so they got me to try Valium when I
go to bed, to reduce the amount of neurontin. Seems
to help. I was awakend by the pain every two hours
(like clockwork) now I get 4-5 hours in a
row!<br
care,<br
fairy" box?

United People With Disabilities Country Affair EXPO 2004

Free booth space to Artist with disabilities. (we want painters, musicians, dancers, woodworkers, photographers, etc.) Please help spread the word.

Please make plans to attend!

* Outdoor event for people with disabilities. (30ft x 150ft tent)
* September 3, 10:00 am to 5:00 pm.
* September 4, 10:00 am to 5:00 pm.
* September 5, 11:00 am to 5:00 pm.
* Location: Lindley, New York.
* To be held on 150 acres of private property.
* Free wheelchair accessible hot air balloon rides.
* Free glider rides. (turf runway on property)
* Free horse drawn covered wagon rides.
* Vendors demonstrating, displaying products, services and latest technology for people with disabilities. (try before you buy)
* Free numerous daily workshops.
* Free nightly concerts.
* Free daily performances.
* Guest speakers.
* Free booth space to artists with disabilities.
* Daily drawling to win valuable prizes.
* Join us for the entire time.... camp sites available on property.
* Plus a lot more!

Please consider joining us as an Attendee, Artist, Vendor, or, conduct a Workshop. Hope to hear from you soon.

Sincerely,
UPWD Country Affair EXPO 2004
http://upwd.net

Property is located on the New York / Pennsylvania state line.

Driving time from:

Albany, NY ... 4 hr, 8 min.
Boston, MA ... 6 hr, 53 min.
Buffalo, NY ... 3 hr, 0 min.
Columbus, OH ... 7 hr, 34 min.
Detroit, MI ... 7 hr, 41 min.
Hartford, CT ... 5 hr, 43 min.
NYC, NY ... 5 hr, 36 min.
Phila., PA ... 4 hr, 58 min.
Richmond, VA ... 8 hr, 12 min.
Syracuse, NY .. 2 hr, 41 min.
Toronto, CAN ... 4 hr, 41 min.
Wash., DC ... 6 hr, 27 min

Hi,
I find it interesting that this is the first and only time I've ever
seen a discussion on this list. have any of you bothered to answer
Nicole's questions regarding SCI ? - she's the one who started this
whole "disease" topic. BTW, her post appeared to me to be written by
someone whose first language isn't english (sorry Nicole if I'm wrong).
In some other countries (yes there are other countries out there),
they use the term "disease" in other ways than we do. Get over it.
Peace out,
River ( I feel like I have a disease today)

Whether a person calls it a disease or not I think it is there right and discretion to use what they want. We just need to be respectful to all, even if we don't agree on nomenclature. We all know our own conditions, but we shouldn't feel were experts on everyone's disability.

Since I am a complete injury, I don't have any
pain to deal with. Several people I know have the
morphine in their pumps, I have only the baclofen. As
Cindiers said, you get none of the side effects and the
doctor can set the pump to leave you with enough
spasticity to keep some tone, and yet relieve the majority.
As for the thought of the spasms getting better
after two years, I've never heard of that, mine got
CONSIDERABLY worse!! When the cathetor kinked, I was able to
see just how bad they got, I didn't sleep for 5 days
straight. <br
the pump however. The are a different kind. I still
take my ditripan, but the only time I get those is
when I have a UTI. So they actually serve a purpose,
just like my leg spasms, only get them when I am hurt.
<br
delivery rate can be constant of heavier during more
spastic times. The battery usually lasts approximately
4-6 years, I am going to need a new one soon, so I
have already talked to the neurosurgeon about updating
the whole pump, since they are going in anyway.
<br
I'm not sure about my back, about an inch?!Again, I
can't say enough good things about it, but being a
complete injury, it's a little different for me. At first,
I was on the lower dose baclofen and having my pump
filled every three weeks, now I go in every 6 weeks and
I get 1/1000 of the oral dose I was taking and NO
side effects.<br
with the message board also Randy. I guess if we just
have to refresh with the message icon?!?!<br
this was helpful!<br

was there a chat last night? darn...i missed
it...forgot all about it...hubby said i had to stay of the
net anyway, he was waiting for a phone
call....anyway...when is the next chat and did my bro superquad make it
this time? catch ya all next time....have a safe
weekend...bye

I agree, enough said. No more from me.

hopeless,

doug

Hi,<br
the pain let up much more today for you? I have tryed
the Neurontin, but only a sample. It worked so good
for the pain for me but then couldnt feel my lips or
finger tips amoung other things. LOL I only took 2 a day
in the morning and at night. Then started the next
day, was so tired I laided down awhile. Well woke up a
few hours later and wow no pain but nothing anywhere
else.. LOl <br
funny with my other medicines I take. I never took it
again to see if it was any better. Guess I was to
afraid. My neighbor takes 8 a day. Wow she must be zoned
out of her mind, I tell her. <br
better, before the doctor had her on 10 a day. Wow, she
said then she was sleeping most of the day and night.
Not so good at all, actually this medicine is mainly
used for seizures. But is having great effects on pain
for SCI people as others.<br
as well, but look forward to seeing you next week.

I was thinking you got booted and couldnt get
back in. Dorla and I talked for maybe an hour more and
no one came in after you got booted. Must of been

Hello Randy,<br
Hope you have a wonderful week end as well. We missed
you last night in chat but hopefully it will work
next week. Something was wrong with the server in

Hi Kathy,Glad you like the pump,I should go try
the injection out,just have not been brave enough.One
thing is my spasms keep my legs toned.I haven't had any
troubles with spasms and cathing,only thing i get is a
spastic bladder sometimes.Ditropan and Detrol seem to
keeep that undercontrol pretty good.About once a month
i get a spastic bladder,then i have to up my dose's
and cath very often.The baclofen pills did not work
for me at all,in fact made my spasms worse,i am one
of the few this happens too,plus i didn't like the
side effects.I just can't make my mind up on trying
the pump,somedays the spasms are ok and
tollerable,others are not.More than likly i will have to do it.Some
people have told me the spasms settle down after 2
years,so far there not for me.Being so new to this SCI,i
am kind of taking my time i guess.Well thanks for
the info,Randy

Hi Carolina,<br
days ago. Things have been very out of sorts over
here. Anyway I have the Quickie XTR. Well I did for 3
weeks. It went back a couple days ago. <br
ordered it and it wasnt working for me at all. They
normally dont take them back, since their made for the
person. Well the sales rep happened to be visiting my
medical supplier the day it went back to the shop. He
said he could keep it for a demo providing I bought
another Quickie. So hopefully you can get one to try out
for a few days before you order.<br
ask is because the XTR handles alot different? For me
I have been riding a fold up wheelchair and havent
had a rigid in 20 years. So thought it was just that.
But because of the spring you have more bouncing. It
also tips easier, so anti tips should be ordered until
you get use to it. <br
weighed more then it saids in the pamplet. It acually
weighed more then my E&J folding one. Yhought it was me
but friends said it felt that way also. My E&J
weighed 32lbs. <br
this chair then most. The spring needs to be adjusted
alot and oiled yearly. Also need to be balanced
(chair) if it gets off it tips easier.. <br
know their getting alot of great reviews on it. If you
want to know more about it let me know ok. But for
sure you need to try one out. Even if its only for the
day where you order it from. Also need to pick it up
at the shop, because they need to adjust it to your
body. The spring for your weight and the back, foot
rest, etc. <br
but it didnt work for me. And it may of been because
I'm use to the stable ride, no different movement
then usually, and it may of been the chair I got.
Looking at others now.. <br
needs to be worked on ever. <br
you can have one to use until the XTR comes back.
Hate to sound so discouraging, but hate to see you get
stuck if it isnt right for you.. But there are alot of
great reviews so it just maybe me and or a lemon
chair.. :-) Take Care<br
Cindiers

touchy aren't you all?
let's educate the ignorant, not cuss them out for being ignorant.
how many of you all that are injured knew all you needed to know right after you
were injured?
let's be a little kinder.
bitterness is a silent killer.

Hello Gang,<br
been trying for over an hour to get into the Chat
area. It wouldnt even let me post.. Cant figure out
whats going on. Well I'm in now. So I will wait and see
if others can get in also.. See you
soon..<br

Hi,<br
well, maybe next time-Noreen

Hello everyone,<br
room. Been trying since 8pm.. I will sjut down and come
on back and try again.. Hopefully that will work.. I
think it just isnt my week. :-( <br
Soon I Hope. <br

I'm not sure if I was the only one here, or if I just don't understand where the
chat is?!Please could someone let me know.<br
week.<br

I was hoping to make the chat but I am just beat
tonight. Had a flat on the van on the way home with my son
today. Thank goodness Chuck wasn't driving. It was
really hot and nasty getting that thing fixed. But think
my son was a bit hotter....he did all the work...LOL
I wanted to help but he wouldn't let me. Good kid
really.<br
rest. I hope you all chat again next week and I will
try and be there.<br
well and take care<br