Wordpress Blog

Hello Everyone,well i'll try to give my view of a
elephant ear.I would callit a like a sweet and fluffy pie
crust,abotu 10 inches in diameter,deep fried then coated in
sugar,sometimes a fruit like cherrys or strawberrys,i'm the plain
type person.They are good when hot,not quite as good
cold.<br
fun.Been there done that,back in the Blizzard of 77-78,we
was out of power for over a week,in fact wqs
starneded at home most all that time and we lived on a
major state highway.Neighbor family ran out of food,and
national guard brought in food from townto them and us.We
were ok,but the neighbor had his dad pick up extra
things for us also,bread,milk,eggs,pepsi etc.We had to
walk 2 miles throuhg a thick woods to feed cattle at
one of our feedlots,needless to say we quit cattle
feeding that spring.<br
break,hope all is ok there Kathy.Sure will be glad to get 99
behind us,Y2K has to better.<br
Randy

I have been trying to find information on the bed
used for SCI patients in the haspital I think it is
called a Stryker frame but can't find any info. If you
can help I would appreciciate it.<br
good to see that all of you are getting on with life
after a traumatic injury. Keep it up, and God bless
you.<br

Happy birthday for friday princess!
Michelle.
xxxxxxxxxoooooooooo

Hello Dorla,so sorry to hear of the trip to the hospital,got to be a lot of
extra strain.My thoughts and prayers are with you for a speedy
recovery.Thinking of you Randy

Hi Guys. everything is back and running.
YEAH!!!!!<br
tears. Not when the hurricane was hitting but after
everything was calm again. Nothing to do. Finally got the
generator going and it died. So went and bought another
one. Now we are set. Just heard on the tv that there
is another depression out there. But hope it goes
away. Don't need any more rain. And neither does the
Carolinas. They have been hit so hard this year. <br
am with you Betty, Elephant ears are the best thing
ever created!!! Never can get enough of them. And we
don't have alot of fairs down here :(<br
to bed. Need to catch up on some sleep.<br
care and stay well<br

Hello... This is Cevi... just a quick update... I have an appointment to go to Craig Hospital in Colorado in May... for an evaluation of my tethered spinal cord and syringomyelia.. I have been fighting to get things taken care of... and I actually have to pay out of pocket for all this... UGHH... but I need to do it since my doctors here dont want to help me. I appreciate all the kind words and support!! Thank you very much!!

Cevi

[INLINE]

Take Care and God Bless

CEVI [INLINE]

In a message dated 10/03/2005 14:57:12 GMT Standard Time, cooperm1@... writes:

Hi everyone,
I have a big problem with UTI's. Last year probably had one once a
month, and then developed kidney stones. Had a stint removed from
bladder at end of december. Since then have been uti free.... until
last week. Now, even my symptoms have changed. Tommorrow I have an
appointment with a urologist, familair with sci. I need to do
something. I read about d-mannose and sci. Has anyone any
experience with it??? How about antibiotics, like wihich one and how
much. I want to be prepared for the doc tommorrow. Thanks for your
help.
mary

Hi Mary,

I make sure I drink one carton of Cranberry Juice a month, plus I drink heaps of water. Since I've been doing that I haven't been getting half as many UTI's as I use to!

Hope that's of some help,

Love Smurf xxx

hi i'm a c6-7 quad in minnesota looking for antone to talk with. i'm pretty bored with my life right now.my address is godsmackjayme@....
Samantha Carroll <laxchic1120@...

I just wanted to introduce myself. My name is Samantha Carroll and
I'm a 17-year-old ventilator dependent quadriplegic. I'm just
looking for someone to talk to, so if you care to chat, just drop me
a line at scarroll1120@... You can find out a little more about
me at: http://www.GeoCities.com/laxchic1120/samspage.html Hope to
talk to you soon! :)

Amelia, you keep sticking it to 'em. The docs that is. They seem to be so mired in "statistics" that exceptional people get the damper put to them. Nothing like a "can do" person getting the "won't do" from a doc eh? Puts the fires in the challenge. I thought about changing docs when I proved them wrong the first time, but it's so self gratifying to see their face every time I get new motions or abilities. Almost a cruel vengeance. Go forth and fight on!
Amelia Barragan <ac25ac@...

Hey Carrie,

I am T-6. I used to not be able to move or feel anything right below my nipple line. But now I can feel a little further down, internally that is. I cant feel my skin but I can feel a nudge inside. I can also move some muscles on my back almost down to my hips and some in my abdomen. I tried to tell a doctor when it first started but he said it was probably just my diaphram and not really my abdomen muscles. Why should he believe ME? I mean who am I to know more than HE? It made me angry that he totally disregarded it. I have an appointment comming up to see him again, and I am really going to show him, since I can move alot more now. Well, compared to what I used to be able to do before. I don't know what level I would be considered now that I can move a bit more.

The body dose not cease to amaze me. There are some things that even doctors can't explain and it keeps everybody in wonder. So, I am forced to have some hope of further recovery when before I had none.

Amelia

carolyn king <carrie_raven1@...

Hi Amelia,
My husband can't feel when I flex either. When I try to use my muscles as if I were trying to lift my leg we feel it. Its very suttle though. I think it is obvious whether a movement/feeling is phantom or not too. If you are doing it on command you are making it happen. What level are you?
Amelia Barragan <ac25ac@...

Hi Carrie,

I read your message about being able to contract muscles all the way down your legs yet you cannot move them. I feel my muscles contract too, but when I ask my husband to put his hand on them to see if he can feel them move he cannot. So, I was wondering, can you feel them move on the outside or just internally? Some might say that what I feel are phantom movements or feelings, but I know this is not true. I know what phantom feelings are and I can distinguish between the two.

Amelia
carolyn king <carrie_raven1@...

Hey, I was just wondering if anyone has experienced returns such as mine. I am able to contract muscles all the way down my legs yet I can not move them at all.

Carrie

Just a note to let everyone know we are ok. The
Hurricane came right over us but we are fine. Not too much
damage but alot of water. Our power is out so right now
I am at the office letting everyone know we are ok.
No lights or phone. We have a generator so we can at
least have some comforts. Fired up the computer but
then the phone lines went out...LOL Oh well. Will let
you know when we get back up and running. They say it
can be 2 or 3 days. YUK!!!! But we really are fine.
Just bored...LOL <br
everyone. <br

Hi Karen,glad your ok,good thing the hurricane was not a monster like most of
them.Well hope the power and phones get fixed for you,no fun without,maybe a
preview of Y2K?.Talk toy ou later Randy

Sounds like a great day Betty? What did you do with the elephant ear?<br

Hi every one,
My name is michelle,
Am 45 yr lady who suffered spinal cord injury in 1986 after
spontaeneous bleed at the thoracic level.
I am ambulant but i have positive rhombergism (no balance in the
dark)the usual bladder bowel probs associated with.
To this day nobody can tell me why the bleed or will it come back
Its about the white wine! yes has that effect on me! BUT i have
noticed that good bottle wine does not have that effect, it seems to
b the Cask wine. Nasty stuff!
Would love to make some friends here for i feel a bit like an alien
in the healthy spine world!
Even some doctors look at me like ive got 9 heads.
Look forward to talking to you all.
regards
michelle

Ed got back from the fair today without an
elephant ear for me so he tried to make it up to me--went
for a bike ride--was only the second ride of the
summer for me--Ed hasn't ridden much this season--it was
my longest ride, over 90 miles in the "hills" of S
Ohio. Ed has to lift me on the bike which I am afraid
will throw his back out, he ain't quite as young as he
used to be (and I ain't quite as light as I used to
be!) The bike leans way over so there I am sort of on
the bike and falling off at the same time, clutching
his arm and turning it black and blue, with my foot
on the wheelchair to keep me from falling off. I
encouraged him to get on the bike as quickly as possible
before I fell off--and away we went--about three miles
before the light come on saying we were just about out
of gas--another leaning stop. This time I braced
myself by leaning on the gas pump. Ed tells me I will
not keep the bike from falling over that way--I say I
am trying to keep me from falling over. Course he
couldn't find the key to the gas tank--it was in his vest
pocket in the back of the bike under something--took
forever to get it out--well maybe 30 seconds anyway lol
Saw some mighty pretty countryside and got back with
a sore butt and a hungry gut, a great
day...Betty:&gt;)

hey nick, welcome! man i have the same problem w/ wine. the last time i drank was 2/02/05 b4 that was newyears b4 that was christmas....you get the idea. maybe its just the body's way of telling you theres foriegn object in the body.......who knows?

very nice website dan. i'm sure many will find your information very useful. here's a bit about me... --
dave

In a message dated 3/14/2005 2:11:56 P.M. US Mountain Standard Time, kenwebnsah@... writes:

Greetings everyone,
Just wanted to introduce myself and tell you a little bit about myself
and the website I'm putting together.
After suffering a severe spinal cord injury and now getting on with
my life better than before felt it needed to write a guide to
rehabilitating and living with paralysis so others can live as I am now.
Trust this site will grow to become a resource for those interested in
or suffer a similar fate, thereby providing more information and
guidance than is currently available to deal with such an event.
You can view it at: [url]http://www.notsorryamhappy.com[/url]
Keep smiling everyone,
Ken

Hello,
I'm Nick, from beautiful Savannah GA. 43y/o C 4-5 since 12/30/95 I
just found this, finally a SCI chatroom with lots of members. This
is my first time posting.
I break into a dysreflexif sweat minutes after I've had my
first couple sips of beer. It lasts for 5 minutes, then no more
sweats for the rest of the evening. It started 18 months ago, and
is getting progressively worse. But there are still times, 1 out of
5, when hardly anything happens. I'm not a drunk, I just enjoy a
couple beers on the weekends and maybe once during the week. It sure
would be nice to catch a lil'buzz without getting drenched right off
the bat.
I wonder if anyone has/has had this happen to them. Can anyone
give me an explanation as to how 2 swallows of beer in the stomach
could equal the response to a full bladder? (It even comes on
quicker than to a full bladder) Any solutions, other than the
obvious...
Cheers
From the second biggest St. Patrick's Day party town on the east
coast. 'Cept this year it's cold and rainy.

It is a bit messy here. Not too bad. We are
getting alot of rain a nd there is a lot of flooding. But
not near as bad as Carolinas. They say by tonight the
wind will pick up but only up to about 50mph. The
biggest thing is the rain. But everything is fine. Not
even boarding up. It is going to oass just west of
us,but they say that is the worst because all the rain
is on the east side of the storm. Can't
win!!!<br
how it goes...LOL<br
well<br

Hi Karen,just wondering if you are ok down
there,saw on the news that you were getting hammered by
another hurricane,hope all is ok there.<br
normal here,but did get a storm on Wednesday,even had a
torando warning nearby,but we nissed it locally.Well take
care Randy

I am afraid the advice about letting go and not
taking it anymore is right. It will be the hardest thing
in the world for you to do. But you have to do it.
Let go. She is in a chair. That doesn't mean she is a
baby. I have made the same mistake with chuck. And it
took all I had to let go. But I came to realize that
he is paralized not helpless. Yes, he had his hard
times but when I stopped doing for him and making
excuses for him he got on with his life. He found what
worked for him. She will find what works for her. It may
take some time and she may say that you hate her. But
all you have to do is tell her you love her and want
her to go on. Just keep saying I LOVE YOU. She will
come to see that you really do in time. As I tell
chuck, "You are paralized not an invalid. Get out there
and do something!"<br
helping. I think of you alot. And hope that things are
going better for you. But remember it may get worse
before it gets better.<br
well<br

Cevi. I also live in CA. Theatty. I use is Mark Potter in San Diego. He handles accessibility cases but he could refer you to a good one. Phone 1-800-383-7027. He is good and I'm sure he can help you. Don in 29 Palms.

Anyone know or use any lawyers in the state of California? I need to get a good lawyer that specializes with malpractice cases and since I live in California now... I have to find one here instead of using my old attorney. Thank you for your time.

Cevi

I am in total agreement and if you will give me the address I will write alos.
It is not right and they should be made aware of the and they have caused.
<br

Greetings everyone,
Just wanted to introduce myself and tell you a little bit about myself
and the website I'm putting together.
After suffering a severe spinal cord injury and now getting on with
my life better than before felt it needed to write a guide to
rehabilitating and living with paralysis so others can live as I am now.
Trust this site will grow to become a resource for those interested in
or suffer a similar fate, thereby providing more information and
guidance than is currently available to deal with such an event.
You can view it at: [url]http://www.notsorryamhappy.com[/url]
Keep smiling everyone,
Ken

If you are serious about naturalk jplanning for birth control, I strongly
suggest reading the book "taking control of your fertility' by Toni
Weshler(sp?). I have used it and so has many of my relatives/friends. Works
great, but is a little effort. Good luck
liz
--

Cindie, <br
Richard...if for no other reason, Ed and Sparky need to be
spared!LOL<br
aware of the problems they create or the fact that
there are problems they need to address. If it were me
I'd surely let Betty and anyone else write on me
behalf. Not nasty, as she said, but informatively
firm.<br
package is on it's way!

Cindie, really glad you're back and maybe putting
some time and distance between yourself and the trip.
There were so many things about your trip that just
wasn't right, but the worst seems to me their failure to
keep their promise--they encourage people to write in
about their dream and when they do and they're on the
show they apparently won't grant the dream--it's just
not right. Since I haven't heard from you that you
don't want me to, I would like to write a letter to
Richard Simmons and say what I feel--firm but polite.
Again if you would rather I didn't please let me know
and I won't. Well I am mad at them and will most
likely take it out on-----Ed?, no----Sparky?, no--not
sure who but I'll think of someone! LOL...Anyway just
glad you're back home...Take care, Betty :&gt;)

Hi,
I'd be happy to answer questions if I can. I've been doing the quad
thing since 1973.
Feel free to send an e-mail if you want.
John C-5-5 SCI

but it was 18 YEARS AGO<br
having teething troubles. sorry mom i know you love her.
but its time for you to stand up for yourself and
start living your own life. shes blaming everything on
her chair. i found love. i found a job. i'm having
fun. i enjoy life. and i think i speak for the
majority of people living with sci's time for some tough
love mom. shes ruining your life you don't deserve
that.<br
ruining your life also.<br

Hi, My name is Cevi.. I had my SCI in 1999. You can take a look at my website that my mom made for me and others to learn from. The website is Horsewmn.faithweb.com

I was 16 years old and was involved in an MVA. I am an imcomplete partial quad. I am dealing with the after effects... severe pain... muscle weakness, spasms, cannot feel hot/cold temps in my limps... at least very delayed reaction. I am also dealing with two disorders caused by my injuries. I have syringomyelia (SM). And TCS.. Tethered cord syndrome. I crushed C1 and C5, shattered C7, fractured T1 and T2. I was completely paralyzed from C1 down but luckily it was just severely bruised. I still have some paralysis in my right leg. I am hoping that when I get my next surgery to untether my spinal cord at C5, C6, that I may be able to relieve some of my symptoms. I am not going to get excited yet because Ive been injured for such a long time now and I dont know if the nerves would recover after this long. I am almost 22 years old.

Is your significant other a complete? How is he dealing with this injury? I know my man is very confused and he sometimes runs away from it because its so hard for someone to understand anything about SCI's. I look normal for the most part.. other than a 12 in scar on the back of my neck and then a 4-5 in scar on the front... and then another 12 in scar on my belly from numerous emergency internal surgeries. You are more than welcome to check out my website or email me personally if you needed to talk or had any questions. Please feel free to ask anything!! That is the best thing to do... is to learn about these types of injuries so you can at least learn and support them with knowledge and some what of an understanding and support. Take care and God Bless.. My best wishes for you and your relationship. Please do not let the injury change your relationship.. use it as a building tool. Hope to talk with you soon.

Cevi
roseswildroses <roseswildroses@...

And may be at the wrong site, you tell me. I am in a serious
relationship with a wonderful man who has a spinal cord injury. I
would like to learn more about about spinal cord injuries, and chat
with spouses, caregivers to those that have one. This man means the
world to me and I would like to learn more about SCI from somewhere
other than doctors or health care professionals.
Any and all information, help and support you can give me would be
greatly appreciated. If there is a specific site for people like me
other than this one, which I see is for those with SCI, I would
greatly appreciate knowing about them.
Thanks

[INLINE]

Take Care and God Bless

CEVI [INLINE]

I'M NOT TO WORRIED ABOUT THAT. :)

And may be at the wrong site, you tell me. I am in a serious
relationship with a wonderful man who has a spinal cord injury. I
would like to learn more about about spinal cord injuries, and chat
with spouses, caregivers to those that have one. This man means the
world to me and I would like to learn more about SCI from somewhere
other than doctors or health care professionals.
Any and all information, help and support you can give me would be
greatly appreciated. If there is a specific site for people like me
other than this one, which I see is for those with SCI, I would
greatly appreciate knowing about them.
Thanks

Hi Randy, <br
great?? I saw you on late the last few nights in ICQ. I
would of said Hi but it said you were in the NA mode.
Either way just seeing you online now and then was very
nice.. By chance is there a new lady in your life??
Since you were on all night a few times in there? Hope
you are taking good care of yourself?<br
getting so tired just wanted to say Hi to you and the
whole gang.. Well I best head to bed, Stayed up way to
late again. Its good to be home. I missed you all in
here, guess your like family alot of the times. Thank
you for the welcome home. ;-) Take care and hope to
see you soon in chat.. <br
Cindiers

Hello Karen, <br
that behind me.. I did write a letter of complaint to
the owner of the hotel. Never thought of the
airlines.. hmmmm maybe will do that.. <br
for an accessible room. Never leave home without
that. ;-) Actually I told Richard Simmons lady that I
needed a completely accessible room. I needed a roll n
shower etc. She is his main PR man (women) Its her job
to do all the leg work. <br
for the room. And when I told her the next day after
checking in (I couldnt reach them by pay phone, that
night. Told her it wasnt accessible and that I couldnt
take a bath. She is the lady who said,, heck if you
never told me you couldnt take a bath or shower I would
never of known it.. And laughed it off, as she was
walking away.. <br
Richard and also in writting tell her again. They need to
be made aware of this again. I would hate for the
next wheelchair user to have to go through that as
well.. Its very sad..<br
will live long enough to use it.. My heart saids he
wont. As time go's on, he couldnt possibly use it.. I
should of asked for something else. I just didnt know
how bad it was. After hearing the doctor tell us
about William after his surgery last time , It all
became clearer to me. Either way I dont have the
strength any more to do any more.. Just the thought is
nice I guess. I will just put it behind me now. He
said he and Kathy had a nice time, so this is
good.<br
great with you and Chuck.. Thank you for your post,
love those 2 cents you gave me.. Alot of good advice.
Take Care and see you later I hope.. Good Night..
<br

Hi Cinders,glad to see you back on here.Too bad
part of the trip went bad.Probably one reason i am not
real fond of trying to travel any without driving
myself.I would definataly write a letter of complaint to
the airline and the hotel.I read on the Chairgirl
column that she wrote a letter and got results,so go for
it.Might make it better for the next time of travel.Well
good to see you back home,later Randy

Talk to him about getting on a maintenance dose of a antibiotic, like
Macrobid 100mg once a day - which works great for me. Try asking him
to give you a standing order(so you don't have to call him every time
you feel one comin on) for a UA(urine analysis) AND a CS(culture and
sensitivity) at your local labratory. This will tell you what
antibiotic will work best.
Hope this helps.
Jim

We had no transportation to go places while we
were there. So William and Kathy took a taxi to a few
places. I was going to go , but when the taxi came to
pick us up, he didnt want to take the wheelchair. So
he called a van service taxi for me.. Another 1 1/2
hours wait. So I declined and stayed in my room.
Actually all I got to see was the airport, studio, hotel
room. Didnt even get to see the ocean, a big
disappointment over all. Was suppose to have transortation
around town,that fell through, as well as getting all
our meals paid for. Nope got one day. So all n all
wasnt the wonderful trip they had painted for us.
<br
it? NOPE, wasnt worth the heart ache it caused me.It
was wonderful to meet Richard and for William to have
part of the dream. I love him dearly and wish I could
of given him more. <br
the show please remember what I meant to say when
Richard asked me what my brother means to me. " He is my
life in the sense he means the world to me and has a
big part of my heart. After our sister LeeAnn died, a
large part of my heart went with her. And a large part
will go with William. There will be hardly any left
when he dies. So my life will never be the same. For a
large part of my life will be forever gone."
<br
let people know when they let me know. I never got
any pictures so will be nice to have a tape of the
show. For a keepsake of our experience in California.
Our dream from hell and back. Boy Its Great to Be
Home... Ahhhhhhhhhhhhhhhhh Thank you all...
<br

Finally, this site woudn't let me post for the
last few days. Was bumming me out big time. But looks
like it is ok now.<br
Cindie. But sorry to hear about the awful trip. I have to
ask...did you ask for a handicapped accessable room? If so,
you need to write a letter of complaint to the hotel.
But send it to the head people. I had the same
problem with our trip to Orlando. I wrote a very nasty
letter to them. You have the right to get what you ask
for. Stand up and fight. Then write a letter to the
airlines, tell them what happened and the fact that you are
all cut and bruised. That is not right. Again send to
the president of the airlines. You will be surprised
that you will get an answer. I have done this when
things have gone wrong and believe it or not have gotten
refunds. You just have to be very pushy...LOL I am good at
that. But I also think they are wrong for charging so
much money and then you can't even get a shower. No
way. Excuse me...but..BITCH at them. <br
also sorry to hear that you didn't get the trip for
your brother. But hang in there. He is still here and
he may still be here next year. You never know. HE
WILL BE HERE NEXT YEAR!!!! Then maybe you can find
that van and everyone can go on the trip. Check with
your radio stations and tv stations. Ask for help,
maybe there are peole out there that are willing to do
it for you. Go to car dealers, tell them the story.
DO NOT GIVE UP!!! Car dealers love that kind of
thing. You will get that van.<br
mouthy. But thought I would toss my 2 cents
in...LOL<br

The trip from hell continued when we checked into
our hotel. Ahhhh, first off the bathroom wasnt very
accessible. Couldnt use the bath tub and couldnt turn around
even. Not enough room near the toilet without jamming
my chair between it and the tub. So had to sponge
off in the sink each day. Yuck, felt like crap.
<br
to use the phone, no phone service. Wow couldnt
believe it, you needed a major credit card to call out.
Even locally, I had a phone card but couldnt use it,
no phone service. So Had to go outside and down
maybe 2 blocks to use a pay phone. We had rooms which
were $175.00 a night, dumpy. Motel 8 would of been
fancier for less money and a phone, no kidding. The hotel
was called "Beverly Garland Holiday Inn. So if your
going to LA.Calif, believe me dont stay there.
<br
use the bath tub. Told her what was wrong. And she
says I would of never known you couldnt use the bath,
you look great, as she walked away. Grrrrrrr. By that
time it didnt matter since we were leaving in the
early morning, saved my energy.<br
was no dinner with Richard, was their way to get us
to the studio. We saw the filming of the show and
were part of the audience. He went through all the
stories and then he said good night. So didnt think we
would do ours. Richard came back out and said we need
to do one more. You guessed it, it was my dream.
Yikes I wasnt ready, heck no bath since thrusday
morning. No transportation to go shopping for a light
weight blouse. So felt like a bum in a heavy sweater, my
nightware was coming true. It was sad for sure.
<br
your brother mean to you. I said he is my life and
started to cry. The dumbest thing to say just came out of
my mouth and I couldnt say a word after. He went to
William and they talked, so this was a relief. One would
think we didnt know each other well. I told Richard in
a letter about William and me. William answered
differently then what his wife already told me were so. Oh
felt silly, but Richard safed the show. Whew
<br
very nice. We only got part of my dream for him. He
got some camping equipment and a few days stay at a
KOA, (Kampgrounds of America). I had asked for a
rented car or van they could use for a trip to South
Dakota, so they could all go camping as a family. There
is so many of them that they dont have a car big
enough for all of them. And never had the chance to take
a vacation together. (no extra money) He wanted to
go to the black hills to offer up prayers to his God
before he dies. Well still no transportation to go
there. <br
would have time to go there. Well the season is over
for camping and William isnt suppose to see another
summer. So I wonder now if my dream was so good after
all. I have heard William many times hoping to get to
the Dakotas. Just didnt realize how fast time go's
by.

Hello Everyone, <br
Been resting up all week, decided better get online
and let you know how my trip went..;-)
<br
on flying. Wow that part of the trip was smooth. I
checked in at the airport and right away said need a gate
check for my wheelchair. ;-) It felt great to know I
didnt feel such a ninny and not know. My chair was
tagged and all was smooth. Of course I asked if there
was room for my chair first, in the closet. ;-) Had
the air carriers paper with their rules on it. So
knowing it I felt let them say, cant do that. hehehehe
<br
closet. There were also several other people, who use
wheelchairs on some flights. They lost my chair once, but it
was because of the tag fell off. They sent it
downstairs instead of to the plane door. <br
some said they wanted me to transfer to their chair
until mine was brought up. My sister n law went in
search of my chair. So told them I would wait for my
chair. Since I was so tired and didnt want to transfer
twice. They tried but I waited, they found it fast since
I was on the plane and they needed to fix and clean
the plane after I got off. Ahhhhh, so all these tips
and more helped me so much.. I cant tell you how
thankful I am for all the help. WONDERFUL.. Oh and they
bumped me up to first class (free) on a few flights.
Wow!! so this is how the other half lives. WOW
<br
Yuck.. Most of the people who loaded me in and out didnt
know how to do it. Alot of the belts were lost also,
so nothing to keep my feet and legs on the chair.
Alot of cuts and bruises. Know how my bags feel now..
Maybe someday they will come up with a better way.
Doubt it.:-( <br
Airlines. They were the best and helped me alot. A nice
bunch of people. But without the great advice I got
from you all in here, I would of never made it.
Thanks.

Hi everyone,
I have a big problem with UTI's. Last year probably had one once a
month, and then developed kidney stones. Had a stint removed from
bladder at end of december. Since then have been uti free.... until
last week. Now, even my symptoms have changed. Tommorrow I have an
appointment with a urologist, familair with sci. I need to do
something. I read about d-mannose and sci. Has anyone any
experience with it??? How about antibiotics, like wihich one and how
much. I want to be prepared for the doc tommorrow. Thanks for your
help.
mary

I come to this site so many times with tears
running down my face. So down hearted and no place to
turn to face my problems and somehow I always find
something that makes me really laugh right out loud. Just
had to reply to your message. You should be careful
about advising people to be nice to g/f's. From what I
read here Randy is on the look out and he just might
be too nice and steal her away. lol Dorla

Anyone ever had any problems with rectal bleeding? If so, how was it
resolved?

It sometimes helps to contact your State Senators and your House of Representative Congressperson. They can sometimes put a lot of pressure on insurance companies. Especially if you have a legitimate case and the HMO just doesn't want to pay.

I just got word today that my referral for untethering my spinal cord was denied due to the hospital and neurosurgeon being out of their network. I have an HMO and even saw the nsgn in their stupid network and had him make a recommendation to send me to the special hospital in CO for the surgery. Now they want to send me to yet another stupid doctor who doesnt even know about syringomyelia.. and probably doesnt even know about tethering. Has anyone had problems like this with their HMO insurance? and what did you do? I am appealing the denial and also am going to switch medical groups. The medical group I am in is the deciding comittee on where I am aloud to go... not the insurance that I am paying for every freaking month! I am so furious! This is the second referral that they have denied. I am thinking about contacting my lawyer about this matter. Please help me if anyone can. Thank you so much for any help at all.

Cevi

Take Care and God Bless

CEVI [INLINE]

she just joined the club and shes my g/f<br

Dear Sir/Madam:
I am a Chinese quad, live in Shenzhen(the city near HongKong), plan
to establish groups(Family style) for paralysis individuals.
rebuild their confidence and exert the colony power under the warmly
interdependent and giff-gaff atmosphere, we want to put in practice
a physical rehabilitation and vocational training. ( we could
commence obtain partial contribution of funds from Shenzhen disabled
persons association ). Since we have no any experience in such
project, so, would you kindly give us your suggestions about our
project? Or Could you please recommend any similar mode which will
helpful for us? Such as:
1. Professional project frame of rehabilitation and vocation
training for paralysis
2. Colony composition distribute (collocation of Physical
therapeutist,Doctor,Psychologist,Nurse, Vocational teacher, service
persons depend on the amount of paralysis individuals
3. Finance and housing Budget calculate principal
4. Social available resource
5. Assistive devices for paralysis (Assistive devices for mobility)
If you have ever ready experience? We would like express our
acknowledgement in advance.
Looking forward to your e-mail.
Your sincerely
Lei wei
E-mail: rcatc@...
Tel: 86 755 82276852
Mobile: 86 13801267566 86 13923719602

i've heard the word settlements with insurance a
few times on here.<br
you get hurt and your insurance company gives you
conpensation ?????<br
one red cent from mine or any other. i guess it
depends how the accisnet happened.. how were all of you
injured ????

Hi,

There are two types of spinal meningitis. One is viral, there is not much you can do for it since it has to run it's course. I don't think that one is too serious. The other is bacterial. This is the more serious one. Antibiotics are the treatment. You can get pretty sick from this.

Good luck and I will keep him in my prayers

mary

Through one of the Dis. Magazines I recently met
a young lady from Cuba. She has been a quad for
five years now. And has been using the same fold up
hospital wheelchair that she went home in. She is in need
of a new chair. I would help myself, but my lawyer
still has been unable to reech a settlement with the
insurance company.<br
been unable to get any aide from her goverment or any
of the local associations that deal with Dis.
people. <br
help, or might know of an organisation that might be
able to help. If anyone has any ideas please post them
here or e-mail me at JamJam71@...<br
Gang!

Exactally Sleet,like in rehab,they tired to get
me to shoot some basketball,heck i never played any
ball before,and sure was not interested in starting
now,they even tried to get me play cards,i never played
cards before,like poker or eucher(spelling?).I do enjoy
blackjack,but no ones likes to play that.Maybe if i was younger
i would be more interested,but now i'm older and i
want to think wiser,i have enough problems without
adding more.I'm just a farmer and farming was my life,my
hobbie.I'm more of a spectator type of person.

Hi, everyone,
I visited my buddy in his nursing home tonight only to
find out that he was sent back to the hospital with a
suspected case of spinal meningitis. The speech
therapist at his nursing home said it could be the
fight of his life.
You may recall that my buddy has both SCI and TBI.
The speech therapist felt bad, because he was making
real progess. He was tracking with both eyes and
squeezing your hand once for Yes and twice for No. He
wasn't getting this kind of therapy at the hospital.
Do any of you have experience with spinal meningitis?
How bad is it? I am very worried and can't visit the
hospital for another couple days.

Hi all!

We run a site for wheelchair and other disabled models. We are currently looking for new faces (men and women) to join our site.

We are a site that is dedicated to the expression of disabled people and their sexuality. Society has the misguided belief that disabled people aren't sexual or can be beautiful, but we are pushing that myth aside and showing the world we are sexy, sensual individuals

GGW is the largest disabled modeling site on the net We advertise a great deal and traffic is awesome. Our models are very popular and have many fans.

The site is at www.gimpsgonewild.com and if this is something you would like to be a part of, please check out: http://www.gimpsgonewild.com/become_a_model.htm

or

send a full body shot, face shot, name, disability, age, and location to touch_of_midnight2002@...

Thank you!

GGW

www.gimpsgonewild.com

everybody always asks me "how come you don't play
sports"<br
you didn't do it before you probably won't do it
now.<br

The United People With Disabilities web site shows videos dealing with disability subjects and situations. We would like to show your product or service to our viewers. Our web site is currently receiving, on average, 48 first time visitors per day.

Anyone that can access the Internet can watch these programs from their home or location at any time and free of charge. We add new programs on a regular basis and are always looking for new videos to show.

Do you have a video that we can show? If you don't already have a video, we will edit one that you shoot. You don't have to be an expert to shoot your own video. We will give you how-to tips. It is very easy! Your contact information will be included so our viewers can contact you / visit your web site.

We are looking for videos that show a company's product or service. We are looking for videos that show the accomplishments of people with disabilities. We are looking for any videos dealing with disability subjects or situations. A yearly membership is required to participate.

Some of our current programs are...

Jeff Charlesbois: "Sit Down Comic"

Pacer: A parent training / information center for families of children and youths with all disabilities.

Cheryl Marie Wade: Poetry reading.

Freedom's Wings: An organization that offers people with disabilities a free ride in a glider.

In A Little Boat: Exciting footage about how easy sailing is for people with disabilities. See someone with severe Cerebral Palsy easily sail alone. Includes description on how the boat was designed.

Northeast Passage: Action shots of people with disabilities participating in sports and recreation.

Achilles Track Club: How important is exercise after Traumatic Brain Injury?

Tim Baley: This is a remarkable story. Tim is a concert pianist who was born with Cerebral Palsy and slight mental retardation. Tim performs for, and does, a duet with Liberace.

Plus more.

Stop by and watch some of our programs.

Just go to... http://upwd.net and click on UPWD TELEVISION.

*****************************************************************

Accessible Vacations

Eco-Adventure International is an adventure travel company that has been providing quality small group travel experiences for many years. They specialize in travel to Africa and Asia.

Their exciting destinations provide you with an unbelievable number of opportunities for adventure. Whether it is wildlife viewing, photography, or interaction with the local people, your trip will be full of wonder and excitement.

Accessible Tanzania | Accessible Turkey | Accessible Jamaica | Accessible Peru | Accessible South Africa | Accessible Costa Rica | Accessible Thailand.

Visit their web site for more info and great pictures.
(please tell them you received their info from UPWD)

http://www.accessibleworldadventures.com

*****************************************************************

Check out these three really cool remote controlled lawnmowers. They are on wheelchair frames.

http://upwd.net/lawnmower.html

*****************************************************************

Six million wheelchairs take to the skies each year and only five million complete their journey intact. Half of all frequent wheelchair flyers have had to contend with damage to their mobility devices on a trip - so many, that complaints about wheelchair damage rank among the top ten Department of Transportation issues related to treatment of people with disabilities.

At Haseltine Systems Corporation, that's unacceptable! That's why we created The Flyer, the first and only high impact, lightweight, portable case that armors your chair against damage.

More info at..... http://www.haseltine.com

****************************************************************

Free magazine for people with disabilities.

If you want accessible housing, special products, such as ramps, bathing systems, urinary devices, lifts, etc, travel close to home or to exotic destinations, inspiration, how to get in better shape and more, this magazine is for you.

To receive your free copy, click here.

*****************************************************************

For humor dealing with disability subjects and situations, go to.... http://upwd.net/humor.html

Please send your humor to.... submit jokes/cartoons

*****************************************************************

Free service to our members.

Sell your new or used wheelchairs, scooters and other disability friendly equipment here.
Purchase your new or used wheelchairs, scooters and other disability friendly equipment here.

http://upwd.net/equipment.html

*****************************************************************

Free service to our members.

Sell your new or used accessible vehicle here.
Purchase your new or used accessible vehicle here.

http://upwd.net/vehicles.html

*****************************************************************

Free service to our members.

Looking for a caregiver?
Want to be a caregiver?

http://upwd.net/caregiver.html

*****************************************************************

Sell your accessible home or rent your accessible apartment here.

Purchase an accessible home or rent an accessible apartment here.

http://upwd.net/homes_opening_page.html

*****************************************************************

Free service.

If you are an artist with a disability, we are looking for you. We want any type of artist... painters, sculptors, actors, comedians, writers, singers, musicians, photographers, cartoonist, etc.

http://upwd.net/artist.html

To place your information with us, please contact: ARTISTS

*****************************************************************

To view information on accessible vacations.

http://upwd.net/vacations.html

*****************************************************************

Free service.

Place your up-coming events.
Read about up-coming events.

http://upwd.net/upcoming_events.html

*****************************************************************

We need your nominations for 2005.
We need your votes for 2005.

These awards will go to individuals, companies or organizations in recognition for what they have/have not done pertaining to the arena of issues dealing with disability. Please send us your suggestions and let us know why you consider your nominee a.......

Hero or a Zero.

If you don't know of any Heros or Zeros, please stop by and vote for one already listed.

http://upwd.net/heros_zeros.html

*****************************************************************

Free service

Looking for someone you have something in common with? Just need someone to listen? Looking for that special friend? Remember, when you sign our Friendship Book, you are in control of how much or how little to tell about yourself.

http://upwd.net/friendship.html

*****************************************************************

I am so sorry to hear that you are having so much
trouble. I am not a therapist but I can tell you what I do
when Chuck gets that way with me. I don't allow it. He
yells I yell right back. The one thing I say to him is
"Only you have the power to make things better. No one
can do it but you. I love you and am here for you
always. But I cannot change things for you." I don't
think that is what you are looking for. She sounds very
angry. But maybe you have to get angry right back at
her. Tell her you love her BUT you are not the enemy.
She has every right to be angry at times. But she
doesn't have the right to take it out on everyone else.
Maybe you should see if she will go and talk to
someone. Or maybe you just have to make her so mad that
she really lets it out and then maybe the healing can
start. i wish I was more trained in this area. I would
be glad to talk to her if she felt like talking.
Maybe just talking to a stranger would help. If you
think so or if she wants to let me know and I will send
you the phone number. Unless she feels more
comfortable talk online. Sorry I couldn't be of more
help.<br
As they are always telling me, This too shall pass.
it is just hard to get through it. <br
and stay well<br

I have known for some time that things were
falling apart and that was one reason I read these posts
daily trying to find help with understanding and what I
could do to solve our problem. My daughter never had
anger or any of those other mental problems they tell
you about at rehab. But now she is very angry with
everone and no one can do anything right. She says the
family has abanded her and speaks of suscide. Her
sisters have distanted themselves for she so hard to deal
with and twists everything they say to her. She speaks
harshly of us to each other and in general she is
miserable and making the rest of us the same way. Whatever
you do to help her does not please her and she claims
to others that you are interferring. When we have
backed off she claims we don't care and won't help her.
Anyone have any suggestions as what to do? Her chair has
broke down and then the loaner broke and her van is
broken. These family problems were there before and life
keeps dealing us more problems. I am at a loss at what
to do to help her through this terrible time. Why
did it wait til 17 years later? Dorla

I like depo-provera it´is a shot lasting 12 weeks. BEST!!!!! The pill did not work for me
carolyn king <carrie_raven1@...

Hey do any of you girls know what to do about birth control? I was told that the pill was too risky for girls with sci because we are already at a risk for blood clots.

Thanks,

Carrie

I WAS JUST WONDERING<br
injury being 20 yrs. old and all i wanted to get rid of
having to worry about that board. i'm a t-8 so we have
the same level.<br
but were anout the same weight "now" <br
to go wheel'in 10 miles 3x's a week but my 3-wheel
chair wore out and kinda gave it up. so i put back on
10 pounds or so. to many beers :)<br
well<br
of that lift? what did that cost ?

i'm up for an interview.
Dave's story
dave c3 inc 1967

In a message dated 2/18/2005 2:11:01 P.M. US Mountain Standard Time, corine59@... writes:

Hi, my name is Corine and I am a student at Fresno State College. My
sister and I are taking a class, the psychological aspects of
physical disabilities. We are looking for anyone who would be willing
to allow us to do an interview. We are researching parapalegia and
quadrapalegia. If there is anyone who is willing to help us just
email us at corine59@.... We would really appreciate the
help. Thank you so much.
Corine and Tammy Krivis

Hey Sleet,i'm something like 26 months post,T/6
level.I can do some trransfers without it,but feel much
more comfy using it,it's like my sercurity blanket we
had as kids,hard to not use.I have a low profile
cushion,but i only use it in the tractor cabs for added
cushion to the seat.I should try it in the chair,but i
get along with the hi pro ok.Oh my weight,i'm
guessing 165-170,i have gained a few pounds since my
injury.so not overly big nor small.

Hello Betty,Not sure what exact dream kept me
going.I think it is more like what i and my family and
friends would miss if i gave up,still fight that feeling
to give up at times.some days i am so fed up that
i'm ready to check out,but reality sets in and i come
back to grips with things.This has been a real trying
year for myself,first my dad being ill,then becoming
single,now the worst yr of farming we have ever had,it all
adds up.But i keep going,things could always be worse
i tell myself.Lottery would be nice,i could build
my new home that is completly accessable,buy me some
land,pay some loans back etc,hey who knows may win it
someday,but i had better buy some tickets first LOL.Maybe we
need to start a Wheelin On Lotterey pool?.90 something
tickets per week would be better odds than 1 or 2
tickets?.Well something to think about,later Randy

Hi, my name is Corine and I am a student at Fresno State College. My
sister and I are taking a class, the psychological aspects of
physical disabilities. We are looking for anyone who would be willing
to allow us to do an interview. We are researching parapalegia and
quadrapalegia. If there is anyone who is willing to help us just
email us at corine59@.... We would really appreciate the
help. Thank you so much.
Corine and Tammy Krivis

The following web site has a lot of useful information for spinal cord injuries. It is also ran by SCI Dr. and there are a couple of SCI nurses that post there. I think you'll find the site useful and everyone always seems willing to help.

http://carecure.atinfopop.com/4/OpenTopic
you will have to register to be able to post but I think he will be well worth it.

Heath
Melissa <coachbuckles@...

Hello everyone!
My daughter Erin, who will be a year old next week, has a sci
between T3-T7. We are just wondering what we can expect from her,
as far as what she may or may not be able to do. Is there anyone
out there who has or cares for someone with this level of injury?
Her injury is incomplete. Does that mean she could possibly regain
some function or is that completely far-fetched? We know so little
about this, but we want to know as much as possible. Where do we
turn for answers?
Erin receives physical therapy 3 times per week. We are working on
getting a standing frame for her soon. We've seen some movement in
her legs, but I'm sure it's all reflex; however, she has moved her
toes in a way that makes us believe it's voluntary.
We would appreciate any and all information you could give us.
Thank you!
Melissa
Mom to Erin Faith
T3-T7
7 months post

Very good advice Kathy as to stay with what
works,but mainly find out the actual cause of the sore.I
asked this same question about 2 yrs ago on NM,got all
kinds of advice,i bet i had 15 replys,i wrote them all
down and kept score.I think it was almost tied with
Jay,with Roho leading by 1 or 2,then follwed by
Stimulite,which i also tried,too hard,but a neat idea.It's just
like cars or trucks,everyone has there favorite,but
use what works best for you.Take care Randy

heres a start.....hope it answers a few questions anyway.......

The message is ready to be sent with the following file or link attachments:
Shortcut to: http://www.spinalnet.co.uk/EEndCom/GBCON/homepage.nsf/1989cec9be30ee68c12569ff0036969d/e733682d8ef77ca700256c29003518db?OpenDocument
Note: To protect against computer viruses, e-mail programs may prevent sending or receiving certain types of file attachments. Check your e-mail security settings to determine how attachments are handled.

Hey do any of you girls know what to do about birth control? I was told that the pill was too risky for girls with sci because we are already at a risk for blood clots.

Thanks,

Carrie

Hello everyone!
My daughter Erin, who will be a year old next week, has a sci
between T3-T7. We are just wondering what we can expect from her,
as far as what she may or may not be able to do. Is there anyone
out there who has or cares for someone with this level of injury?
Her injury is incomplete. Does that mean she could possibly regain
some function or is that completely far-fetched? We know so little
about this, but we want to know as much as possible. Where do we
turn for answers?
Erin receives physical therapy 3 times per week. We are working on
getting a standing frame for her soon. We've seen some movement in
her legs, but I'm sure it's all reflex; however, she has moved her
toes in a way that makes us believe it's voluntary.
We would appreciate any and all information you could give us.
Thank you!
Melissa
Mom to Erin Faith
T3-T7
7 months post

your correct the jay may and has gone
flat.<br
alot of times i travel long distsnces with my chair
and the extra 9 lbs. the jay weighs is alot of extra
uneeded weight to carry along.<br
for 5.5 yearsz and its gone flat one time because of
a hole. now i have 2 so i always have another one
handy.

OK, everyone has good things to say about the
Roho, but I have been on a Jay cushions since my
injury. I have had three different types and the
information I had gotten was in respect to the maintanance of
the Roho, I am not sure of the Roho except what I've
been told.<br
years. I think it has something to do with complete or
incomplete, feeling vs no-feeling. The plastic surgeon, my
PTs and my chair rep (who's been in his chair for 12
yrs)all recommend the Jay. <br
my new chair I was asking around, I think it may be
a debate like Coke vs Pepsi...the people who have
either one seem to be very loyal to that
cushion.<br
it!!!But Jim, 1st you need to find out what caused the
breakdown to start with.<br

Just wondering everyone, what dreams, silly or otherwise have kept you all going
through the worst and even the best of times?...Betty

Here's how I got started --
That will lead you to more than you wanted to know.
Dave C3 incomplete, 1967

In a message dated 2/15/2005 11:13:10 P.M. US Mountain Standard Time, serojeffrey@... writes:

Hello
My name is Jeffrey and am a college student. My topic is spinal cord
injuries, and I'm hoping that I can find someone to share their
experiences with me. I have much admiration for your courage and
resiliance, and am intererested in hearing how you deal with life on
a daily basis. All info will be confidential and I will make a
donation to the charity or foundation of your choice.
Respectfully
Jeffrey Sero

I've come across some very interesting websites that some of you may also have come across. I found these websites very hopeful and very informative on stem cell research. Everyone should take a look at both of them.

www.centerforscirecovery.org and www.freep.com/specials

Carrie

Karen & Randy, boy are you every right about
dreaming--we have to have something to dream about, whether
it's to get well, walk again, remodel the house
lol--actually remodling my son's room who is getting married
and moving out! Did I ever tell you all about the new
Victorian Room I'm planning???...A favorite game of our
family--just three of us, Ed, myself and Kurt, when Kurt was
growing up was to dream of the ideal house we would have
with lottery money--no gardeners of course but
GROUNDSKEEPERS--and a very long useless decorative fence to show our
neighbors just where their limits were..LOL We had a lot of
fun with that and kept us smiling through some very
dark times...Betty

Hi Geri, Nice to see you again. Boy I have come
along way since the first time we talked. I think you
have the nexus too. It sounds like what Chuck has. And
I think it was because you said that it made
transferring easier that we went with that one. As for the
cover, it does seem to wear out way too fast. Never
thought about complaining and sending it to them. Might
have to do that myself. <br
having a great week. Chuck is doing so well with the
solo driving. He drives all the time now. I have to
admit I miss it a bit. But don't tell him
that...shhhhh!!! I get a bit bored. Might have to start remodeling
this house again. Something to keep me
busy...LOL<br

Hello
My name is Jeffrey and am a college student. My topic is spinal cord
injuries, and I'm hoping that I can find someone to share their
experiences with me. I have much admiration for your courage and
resiliance, and am intererested in hearing how you deal with life on
a daily basis. All info will be confidential and I will make a
donation to the charity or foundation of your choice.
Respectfully
Jeffrey Sero

I have a roho, can't remember the style name,
where the front is firm foam, and the back the rubber
inflatable bubbles. I couldn't transfer from the roho that
is all inflatable. Not sure which style you guys are
talking about. The cover did wear out quickly, in about 6
months! I put my old stimulite cover ( over 2 yrs old) on
and it's perfect. I plan to send it back, it is just
not at the top of my list. later geri

Hi Everyone!
My name is Melissa, and I am the mother of formerly conjoined twins
Erin and Jade. My daughter Erin had some complications during
separation surgery, and she now has a spinal cord injury. It is an
incomplete injury from T3-T7. There is so much we need to learn
about SCI, and I figured this was a perfect place to do that. The
surgery was in June of 2004, but the injury wasn't confirmed until
September. We are so new to this that we don't even know what
questions to ask yet. She is getting physical therapy 3 times per
week and is on a bowel management program. We want to do everything
possible to ensure that she can be as active as she wants to be. We
are open to all information. Maybe that will help us think of
specific questions to ask.
You can learn more about Erin and her twin sister Jade at our
website: http://www.freewebs.com/bucklesfamily/
Thanks for your help!
Melissa

I was released on a Jay Extreme cushion,had a low
grade sore to start with,well it got worse.I blame the
cushion.I got a Roho and have had one since(2 yrs now)No
problem,my old sore healed up,and i never spent the the days
in bed,i probably should have,but the cushion was
great and still is.My sore was on my tailbone,and i
soent on avg about 8-10 hours in the chair a day,not
all at one time,i would get into bed about twice
during the day to get off it for while.I don't care for
the posiable leaks and punctures with it,had one
already,lucky i was at home and found my repair kit.So from now
on out i carry a repair kit everywhere.I haven't
noticed the covers wearing out real fast,there showing
some wear now,but there 2 yrs old now.Hope this helps
Randy

roho are the best coushons avaliable<br
this person a para or a quad. a quad should get the
high-profile para low-profile (generally)<br
alot of feeling in my bottom after my injury and
unfortunatly one of them is pain. from all the time spent
sitting i have whats called bercidus. its not visible or
a pressure soar but its very painfull. the only
cushion that seems to help at all is the roho. i've tried
many others (including the jay lines) and didn't work
as well as the roho. so i would say its well worth
your money. the only thing i don't like about them is
that the cover they come with don't last very long (6
months for me) but there only about 30 bucks.

Hi Shawn,
The idea really is to have a group where people who either have or
know people with different illnesses/conditions/disabilities can talk
about this and share their stories with other people who have
different experiences and help educate each other and the general
public. So far the group's going well :)
If you like I can send you an invite to the group.
Thanks.
Chris

ROHO claims their cushions aid in healing
pressure sores. We are looking for a cushion that can be
used while a sore heals. It's not a very big one and
we don't want to do anything to delay the healing
process. The current cushion is a Jay Active which,
obviously, didn't prevent the sore. <br
careful about doing all the preventive things and we are
mystified as to why she got the sore. At the moment, she is
staying off her bottom for most of the day but she would
love to find a cushion that she could use while the
sore heals so that she can be more active.<br
info or advice will be appreciated. Thank
you.<br

Hi Cevi,
I've had my cord untethered at Denver by Dr Falci. I had a cyst and
tethered cord at C-5-6. The surgery took 10 hours and I was
released after 3 weeks.
Send a private e-mail if you want to.
John

Hi everyone,i see what your saying sleetstack
about being there,how soon i forget about that.I too
was under the imprression that i would walk again
too,and i guess not ready to accept the truth.Probably
the worse thing that happen to me was a guy who had
broke his neck a few yrs before my injury came for a
visit the first day i hit Rehab,well if he walked why
wouldn't i?.<br
could if i lived closer but my rehab was 55 miles
away,so not really a daily thing to do.I did do out
patient thereapy closer to home,but there is haardly if
any new SCI people local.I'm sure if they called me,i
would go and give any advice i could.I haven't been
back to OSU in over a year,my Dr there was a quack and
wasn't wasting my time and money going back to see him
for checkups.Last time i was there i went and seen my
old PT's.didn't meet any new patients then,i think it
was late and they had all went back to there rooms if
i remember right.I wasn't real angry i don't
think,i just had high hopes.Well it was just a thought
from a kind of newbie,take care Randy

I have gone into the hospital as a "consultant".
I hate that you all have had such bad experiences
with the rehab staff, I was extremely lucky. They
actually call me when they have a SPCI and I'll make it a
point to stop in when I get my pump filled. (My pump is
filled every 6 weeks so they are bound to be there when
I have at least one refill.)Randy, maybe you could
volunteer, I'm pretty sure that if I wanted to be paid they
would stop calling, however I feel better knowing they
can actually call someone who knows what they have
been through, I give them my number and let them know
they can call anytime, every once in a while a get a
call...now I let them know about this sight, it's easier to
talk to all of you about cathing and bowel movements
(sad but true) Randy, even if you just have them give
them your number?! Just a thought, one bit of advice
though...remember how hard it was for you when you were there,
sometimes I talk to very angry people who don't want to
hear anything I have to say, they are the ones who
need us more than the others. You see when they get
home and get over some of their anger they realize
they weren't listening to anything in Rehab and have a
whole lot of questions.<br
again,<br

Hello... I just found out today that my spinal cord is tethered by scar tissue. Has anyone had this? Or had surgery to fix it? I will be going to Colorado or UCLA after I go thru my insurance for eval and surgery. Thank you for your help.

Take care and God Bless

Cevi

Take Care and God Bless

CEVI [INLINE]

David,<br
the plans for the standing frame. Please e-mail me at tdc1993@...

Chris,

I'm not too sure how to get the group started but I would be willing to participate and help educate. I am a clinical social worker providing counseling and education to clients and have had a spinal cord injury for 17 years.

Let me know how I can help,

Shawn

Hi everyone,

HEY GERI I'M THE SAME WAY. I CAN TELL WHEN I NEED
TO VOID AT FIRST THE DOCS. SAID THAT IMPOSSIBLE. AND
TO STAY ON SCHEDUAL. THERE ARE SOMETIMES THAT I CAN
GO 3/4 OF A GALLON OVER A 4-5 HOUR PERIOD WITHOUT
HAVING A OUNCE OF FLUID.<br
REHAB COMMENT OF HAVING A PERSON IN A CHAIR THERE. I
DID THAT. BUT THERE WAS A PROBLEM. WHEN YOUR IN
THEROPY, THE PERSON OR THERE MOM/DAD ARE THERE WATCHING
THEM. THEY ARE UNDER THE IMPRESSION THAT THIS WILL MAKE
THEM WALK. SO WHEN I WOULD GO THERE AND TELL THEM HOW
IT IS (I AM A BIT COURSE IN MY WAYS) THE PARENTS
DIDN'T LIKE THAT AND COMPLAINED ABOUT WHAT I WAS TRYING
TO HELP THEM WITH. SO THE ASKED ME TO QUIT COMING
IN.

Howdy Everyone,feeling a little better now,but
think i'm catching a cold now,if it isn't one thing
it's another.I'm the same way as Chuck,haven't had
pneaumonia yet.I just can't cough or blow my nose very
well.Knock on wood,no major colds since my injury.Well thats
all from here,have a great day Randy

I will look forward to hearing from you. It will
be neat to get together for a bit. Maybe you guys
can come out here and Ed can give me some tips on
what I haven't done to this house...LOL <br
I sure hope you are feeling better by now. Thought
they said you can't get the flu from those shots??? I
need to get Chuck his but he is such a baby. He needs
to b e protected because his lungs aren't that great
from the accident. He has a bad habit of getting
pnuemonia. I know that isn't spelled right. <br
take care and stay well<br

Karen, I would love to get together in Florida
over the holidays, I will e-mail you about which days
we will be there...Randy, really sorry you got to
feeling bad from that flu shot, I am going to keep your
post a secret from Ed cause that's why he hates to get
them--lol, just kiddin about that but I know he will gripe
loudly...Kathy, I agree with you about the arthritis, even though
people of just about any age can get it, it is normally
in older people--my mother had it bad in Cleveland
but when she moved to Florida it all but
disappeared--so we'd best all move to Florida and stem off our
arthritis :&gt;)...Take care everyone, Betty

It's been so long, I can't even post
correctly.<br
collection, I can cath, go to bed, and two hours later, have
900 cc cath. They used to not believe me in the
hosptial when I would swear I needed to void, and they
wanted to stick to schedule! THey would insist on
bladder scan, then... THEY would agree with me. Thank God
for the feeling of needing to void! I am not on any
schedule, and I also ALWAYS have a diet coke with me (my
only vice, so I tell people to leave it alone!) During
the day I often empty bladder every hour and a
half..<br
them( usually) but I still have the severe spasms
whenever I lean back or do anything recumbent.
Transferring into bed, or the car. Mine have continued to
increase, so I have had to keep raising my baclofen amount
( carolina, I , too, am on the "high test" which is
2,000 units, the low is 500) I refill almost every 10
weeks)I think Sharon is still on low test, I asked, as
she lives 5 hours away from Dr., and makes lots of
trips, but I think, Sharon, they are still trying to get
your dosage dialed in, right? (Sharon and I have
become friends though all of this) she is a great lady,
with a very supportive family!) Going from the 500
strength to 2,000 was a 92 hour ordeal for me. Now with
the pump rate lowered for stronger med, the stuff in
the "lines" was still 500, so it went in at 1/4 the
rate as it used to, until the new stuff caught up , it
was miserable! If they knew exactly how long the
catheter was, thcy could have computed the time it would
take to clear the line of the old med, but didn't so I
had to suffer. Wouldn't want to go though that again.
But I was needing fills every 4 weeks att hat time.
My pump has been in since April 97 (injury MAy
96)<br
daytime temps in the 90's, sunny and beautiful! (low
humidity, about 10 percent)<br
days, so haven't had alot of extra time, took today to
catch up on sleep!<br

Hello Gang,me too Noreen on having a drink with
me all the time,but sometimes i never get
drymouthed.<br
what i feel and am told is my legs collect the fluids
and it comes back up when i lay down.I rarely go much
during the day,might of even been 6 hours and only go
100 ccs,then get to bed and go a 1000.Then the next
nite be able to go all nite,specially if i
overslept.Shedules don't work with me so far.<br
here,need to do something,later Randy

Randy, You may have to change your drinking
habits to keep from having to get up in the middle of
the night. I, too, cath about every 4 hours. But when
I cath for the last time at night, generally
between 10-11 pm, I can go until I get up, between 6-7
am. The only time this is different is if I have a
UTI, then all bets are off, anytime anywhere! Maybe if
you stop drinking earlier you'll be able to go longer
w/o having to get up?! Just a thought. As for the
arthritis, more than likely you are right, more spasms than
old age, you're still too young for all
that.<br

I forgot, I get it filled approximately every 5-6 weeks. It takes about 15
minutes. And you can have a high dose or regular, don't remember the actual
dosages, but I get the "high test".<br

Do you have a foley cather in? And what dosage are you up to on your Baclofen
pump? And how long have you had your pump in? Thanks.<br

-Hi we live in Texas. He gets Medicaid, but cannot getr Medicare, he
did not pay in enough. He is only 25 and was on disabilit from age 5
to 18 for ADHA, ADD, and ED. so from 18 to 23 he did not get to work
much, was not able to keep a steady job. There is not ONE hosptal
anywhere close to us that has a plastics dept. I have called
everywhere and his doctor has even called Dallas and Houston to no
avail, in Dallas he is considered a charity case because all he has in
Medicaid, and Houston will not accept him, said they are full. Thanks
for info though. Debbie

I have been taking the ditropan since '95, if I
don't I end up WET. I get bladder spasms that are not
controlled by my baclofen pump, different spasms somehow. I
end up taking 4 5mg tablets a day. I can sometimes
miss one a day and stay dry, but more than that or
more than one day at a time and I have an accident. I
ended up getting my prescription of the XL filled
yesterday and have started taking it. Oxybutynin is the
generic for ditropan, the new ditropan xl has no generic.
The side effects i get from the regular include the
sleepiness, but mostly is the dry mouth. People comment on
how I always have a drink with me, 99% of the time
it's a Diet COke unless I'm out. The new XL, your not
suppose to have to as many and the side effects don't
include the dry mouth. I'll keep everyone posted, I am
currently taking 2 10 mg tablets a day. They will hopefully
reduce that to 1 20 mg tablet. So far, how dry I
am!!<br
I'll try!<br

Debbie,

What state do you live in??? Your son should qualify for Medicaid. After 2 years should qualify for Medicare. Your son needs a new doctor. You need to go find a hospital (not local but bigger) and contact the Plastics department, and they should start treating him. Medicare and Medicaid should pay for all of this.

mary

Sure Betty, would love to meet and talk for a
bit. Let me know what day is a good one for you.
Weekends are easier for chuck but can meet with you
anytime. You have to go right by me to get from your mom's
to Daytona. Let me know and willset aside a day for
you. Or at least a couple of hours. We can meet
somewhere or you can come out here. Just holler. This will
be so neat. <br

Hello list, I am new to the list, but I have some questions and am
hoping to find ans. My son was in a wreck Jan, 18, 2003, which left
him paralized from nipples down. We had no Insurance, and the owner of
the truck did not either. Because there was no Insurane, my son was
released after 28 days in the hospital straight out of ICU. He was
sent home, not to a rehab center. He came home with a bed sore on his
butt, we returned every week to the ER for one thing or another, and I
kept expressing concern about the wound and was told it looked good.
Well, after being home 3 weeks, he was rushed to another hospital, the
sore had set up gangreen, he lost a big part of his skinny butt that
night. He weighed 198 at the time of the wreck and last week he
weighed 134. At every hosptal stay he got more sores, and when I would
get him home I would work to heal them up. At one time he came home
with 16 different sores. After 2 years we are down to 4. But the
infections have played hell with his immune system, he has gone into
kidney failure, renal failure, has had to have both hip balls removed,
is anemic, and now has to have his blood special mixed before any
surgery, because of a blood diorder he has gotten. He aslo has the
sweats that can last up to a week or more, I have to change his bed 5
to 6 times a day. Does anyone else have theses problems? My son has
given up. The Doctor wants me to call in Hospice, she has been telling
us for the last 8 months that he will not live 6 more months. He is
only 25, and I am not ready to give up. I quit my job to take care of
him, I will not put him in a Nursing Home, I have worked in one. They
are no place for a young person. But life at home is really unbearable
sometimes, for both of us. Not to mention the rest of the family. I am
hoping and praying htere is a mother out there that has been through
this that can give some advice. Thank You all

Noreen, I also take two or three a day and it is
a real pain--mainly cause I forget a lot and suffer
the consequences! :&gt;)...Kathy, I am interested in
a leash and will e-mail you--thanks! We have a 70
pounder here and will probably be getting another dog in
the not too distant future...Hi Todd and welcome to
the club!...Larry, how are you and Linda
doing?...Betty

Karen, those pictures are sooooo cool,
fantastic!! Ed and I are coming to Fla the day after
Christmas--gonna spend a few days with my mother in Delray Beach
and then the New Year's weekend in Daytona. Any
chance of us getting together?--would really love it.
And yes Randy a meeting in Florida in March or any
time in the Winter is a great idea--I get to missing
my mother soooo much come January, February, and
March. lol What a wonderful weekend you had!...justme,
have been thinking of you and the awful time you must
be having, really hope things will improve for you
soon--take care...btw, I take Ditropan too and one pill a
days sounds VERY appealing...Take care, Betty

Could someone please e-mail me about this
medication. I never knew there was something I could take for
the problems I've been having, but I see so many
different medications mentioned I don't even know which one
to ask my doctor for. LOIS

Hey Everyone,Todd i see you are into racing,i
went to my first Nascar Race this summer at the
Brickyard 400,was a great time,and great seats.No not
really on telling when i have to go,sometimes i do get a
funny feeling,more like a cramp or something,if i catch
it in time i had better be releiving it,or it's too
late,most the time it's too late.<br
Machinery talk for the question on acessable machinery,i
sent them a link to my site and a email,no reply as of
yet.<br
you say do what works.I'm going to my loacl Dr. tod