Hi,
Im a c7 quad 7 years post. I intermitent cathe{straight cathe) every 5 hrs or so. For over three weeks its been very difficult to insert tube. Once urine flow is started it looks clear not infected. Any of you guys have any suggestions.? Ive been doing the ibuprofen thing trying to help the
Hi,
You are an asset to this list, I have read every post on here for over a year and printed your information on your shunt experience. Your posts may have saved my butt from letting some neurosurgeon screw me up. In your experience with a syrinx does activity or lifting, straining etc make you
Hi,
Was wondering how your infection is going?I had my problem where my cathe tube wouldnt go in, luckily it cleared up but Im keeping my wheels crossedhehe. How does that amytriptyline make u feel? Is it helping pain and sleep? I started with 10mg then 25 mg, now Im up to 50mg and it helps
Hey,
You can get them through Express Medical Supply 1 800 633 2139. They are the same price there and you will get them in 2 days as they are shipped from a missouri location. Another source you can use is Sportaid, they are pretty good yto deal with and same price. I prefer Express because they
Hi,
I have a guardian shower chair with the 24 inch wheels and is stainless steel. I believe the problem with your chair is the bearings are bad where the forkstem inserts into the chair frame. I had the same problem, rust was actually running down the sides of the fork. My dad replaced the
Hi,
Ill try to get my dad to measure the size of the bearings I used as replacements for the Guardian shower chair.Hopefully in the next few days. He works at Boeing and got them through there. If their good enough for an f-15 they will work great and do in a shower chair lol.
Ron
Hi,
I remember you saying you were on 50mg amytriptyline for a few years. Did this medication make you gain weight over time? Im on 50mg and notice a slight weight increase Im just trying to be proactive because weight gain is no fun for us. You are a strong woman to have rolled on for 25 yrs
Wow,
How many mgs of it were you on? People try to tell me that medication cant make you gain weight, lol. Im taking this amytriptyline to help with syrinx nerve pain. Could you suggest any alternatives?
Thanks
Ron c7
Thanks,
Sorry if I seemed a lil out of line. Pain gets my moods up and down. I knew you would have experience in the pain med situation. Its like a catch 22, you take it and have side affects, or you dont and have pain, lol. Im only about 8 years into my injury guess I have lots to learn and
I take lorezapam twice a day, 1mg tablet. This helps me somewhat, I have always been kinda scared of valium, never tried it. Are most quadstaking valium for spasms, pain or both?
ron c7.about 8 yrs post
I found my fate on a cold day in 98.
Now I have a choice to either move on or hate.
Its twice the fun now to find a mate.
But many people have died from 98 to now.
Those dont have a chance to see a star or a cow
So I guess Id call myself fortunate.
Lifes all what you make it rolling or not.
So ill
Hi,
My pain lately has been about the same, when I wake up its pretty intense. If I get myself going and in a positive mindframe things roll along better. But I have my down days. Ive been taking the 50 mg amytriptyline and am concerned about future weight gain from it, so Im closely monitoring
I agree with the quality of life aspect. A person in our situation must take what medications he/she needs to be able to go on with life and face each day. Walking individuals cant understand these thoughts. Anyway I take lorezapam as needed (about 2-3 pills a day). This somehow knocks down the
I agree with the quality of life aspect. A person in our situation must take what medications he/she needs to be able to go on with life and face each day. Walking individuals cant understand these thoughts. Anyway I take lorezapam as needed (about 2-3 pills a day). This somehow knocks down the
I agree with the quality of life aspect. A person in our situation must take what medications he/she needs to be able to go on with life and face each day. Walking individuals cant understand these thoughts. Anyway I take lorezapam as needed (about 2-3 pills a day). This somehow knocks down the
Hi,
Well after I started having new pain from syrinx I tried many meds to no avail. My mom had a few lorezapams from when she was having anxiety probs, I tried one and it knocked the edge off my pain.To better describe I have a central pain in my back about injury level, but at times this pain
hi, I had aol dial up for three years, paid 23.90 a month. When I heard about yahoo dsl going for 19.95 a month with a one year contract I jumped on it. I did have some trouble cancelling aol but after three talks with them they sent me a letter terminating service. Yahoo dsl is many times
Hey, Im a c7 going on 8 years post. As far as popping in the shoulders , this is normal to some extent. Ranging your shoulders out should help this. If your shoulders are hurting badly for a long period of time I would go easy on them for awhile and see if it gets any better. All the doc is going
Hey guys,I have a queen size temperpedic bed. I have been using walmart matress covers , they just go over the top of the matress. Anyway these covers are crap , every three days I have to get my dad to put the cover back on , or its torn from transferring. Is there any place out there that
Hey, You can keep aol instant messenger for free and use your old screennames to talk to people. Im not sure how many screennames you can have with the free instant messenger but i have 2. Your profiles will be deleted, but oh well the SBC service is cheap and fast. I talk to people now using
I too deal with the cold sensations when i try to sleep, and yes it sucks. Just dont use a heating blanket as I was burned in three places when I awoke one morning. I keep a walmart oil filled heater next to my bed, a ceiling fan with remote, and a small fan on my table next to bed. I also keep a
I had one a couple years back when my syrinx was found. I just went in the hospital for three days because i knew my dad would cuss me out half a dozen times when i was going number 2 all day. It was embarassing going constantly the day b4 but at least i was in the hospital. When they put the iv
If you ask me roho cushions are a joke. You cant transfer off of them because you sink in like a waterbed. They also pop easily , and you get this all for 400.00, what a deal, lol. Ive used a J2 gel for 8 years and never had a sore problem. The cushion is great because is has a solid front to
I got a Temperpedic queen size adjustable bed, has a wireless remote to operate the legs and head , even had vibrating modes. The bed is greatits firm enough to transfer, but gives you plenty of pressure relief. I sleep on my stomach to give my butt a vbreak at night , and even with my knees
I got a Temperpedic queen size adjustable bed, has a wireless remote to operate the legs and head , even had vibrating modes. The bed is greatits firm enough to transfer, but gives you plenty of pressure relief. I sleep on my stomach to give my butt a vbreak at night , and even with my knees
I got a Temperpedic queen size adjustable bed, has a wireless remote to operate the legs and head , even had vibrating modes. The bed is greatits firm enough to transfer, but gives you plenty of pressure relief. I sleep on my stomach to give my butt a vbreak at night , and even with my knees
When i said the tile floor is great for cleanups I mean when I roll my shower wheelchair from bed to shower and back water is left on floor which is easy to mop up. Also I do my bowell routines on a transfer bench next to my bed and watch tv, occasionally a mess gets on floor...carpet would ssuck
When i said the tile floor is great for cleanups I mean when I roll my shower wheelchair from bed to shower and back water is left on floor which is easy to mop up. Also I do my bowell routines on a transfer bench next to my bed and watch tv, occasionally a mess gets on floor...carpet would ssuck
Well I use a Guardian transfer bench with the commode opening . Its an older model and it has a nice tall back. I just take the pail put a plastic bag in it and im ready to go. This way I can watch tv whileI get the routine done. Ive thought of starting to use my guardian rolling shower chair for
Hey, Im still dealing with nerve pain in back and stomach areas. I take 50 mg amytriptyline at night when I need it, and two lorezapams a day when I need it. I find that swimming helps me, I do that twice a week through a program here called Show Me Aquatics which is a swimming program for the
Hey, Im still dealing with nerve pain in back and stomach areas. I take 50 mg amytriptyline at night when I need it, and two lorezapams a day when I need it. I find that swimming helps me, I do that twice a week through a program here called Show Me Aquatics which is a swimming program for the
Hey, Let me know when you try lyrica. im struggling with this syrinx pain.Its not stopping me but its not letting me pursue some of the goals I wanted. The amytriptyline does a lil good at night but not to much. Its hard for me to commit to obligations such as school, when im in this pain.
It really does suck to have a syrinx. Its the biggest no win situation Ive ever been in besides spinal injury itself. I ask myself why suffer everyday if I can get it drained or shunted? Then the docs tell you about the major risks and people that have had syrinx operations tell you the horror
Hi, The only way you can know if you have a syrinx is through an mri. The number one symptom is new pain that you havent experienced before. I thought I had a bladder infection for the longest time when my pain started. I finally requested full testing from my primary physician and the syrinx was
Hey, Im a c7 quad and live with my father in a house he owns. I think the best thing to do is be realistic and realize that our fathers wont be around forever . Sitting and talking with your father and family can help prepare you for the day it happens. I have done things such as set up a special
i HAVE AN EASYSTAND 5000 HERE AT MY HOUSE. it has thecapability to be rolled around independently while you are in standing position. anyway when you first start standing you will feel light headed, kind of a tingling feeling. to combat this problem youshouldnt stand in the frame to long for any
Hey, The majic mobility x4 and x5 look like pretty tough chairs, but I have a Quickie p-222 special edition chair that I was given at Gateway International Raceway in Illinois and its a damn tough chair as well and parts are easy to attain. After I installed an auto seatbelt, and adjusted the
Hi Dan,I was wondering how the lyrica is working for you? Also Ive been on 50 mg of Amytriptyline at night for close to two years and have noticed my guts some bigger. Have you experienced any weights issues with this medication.?Ron c7 8.5 years in quadadise
Hey,Someone asked about the auto style seatbelt I put on my Quickie P-222 power wheelchair. I just ordered it from a place called the Aftermarket Group. It looks similar to a lap seatbelt in a car. Cost 15.00, I keep a couple in stock at all times, lol.Ron c7 8.5years Everydays a
Hey, I dont have a 4x4 wheelchair but was an avid atv rider for years, anything with those aggressive, big tires is going to track mud, dirt andgrass indoors. And for the carpet, well you might as well rip it out and put tile in, lol. If you had wide doors, tile, and a dual arm van lift, then it
Hey, What do you guys do when you enter a restroom and their are several stalls but a walking Joe is in the handicapped stall. This forces you to wait awhile, then the Joe walks out of the stall finally, do you guys say something, stare him or her down, or let it go. When I let it go I feel like
Hey, When my dad sees a strapping young man pull into a handicap spot without any tags, he takes matters into his own hands and gives then a nice 8 foot keyjob. Maybe this is wrong but I sure feel good when I hear he made one of these a-holes pay.lolron
Yes Dan I agree if there is one stall then we should wait with a smile, but when there are 3 or more regular stalls the walking joe can use and we are forced to be on public display at the stand up urinal, then im at least going to stare them down. It also depends on my mood, sometimes Im willing
Yes Dan I agree if there is one stall then we should wait with a smile, but when there are 3 or more regular stalls the walking joe can use and we are forced to be on public display at the stand up urinal, then im at least going to stare them down. It also depends on my mood, sometimes Im willing
Well he makes sure its a high chevy truck or a high profile car. Usually you can make a good judgement.Besides even people with invisible disabilities should use tags. If you ask me I think places should put ample handicapspaces like Walmart, then their wouldnt be a problem. Maybe I need to put my
Well he makes sure its a high chevy truck or a high profile car. Usually you can make a good judgement.Besides even people with invisible disabilities should use tags. If you ask me I think places should put ample handicapspaces like Walmart, then their wouldnt be a problem. Maybe I need to put my
Hey, The reason why we shouldnt ban everything is because we are americans. This country is based on freedom of choice, thousands have died for this right. If you want to live under harsh rule go move to Great Britain or Iraq. If someone wants to smoke, drink, have strange sex practices...as long
Hi, I guess some of us deserve to be a quad more than others, but to the walking world we are all looked at the same basically. People in general know nothing of disability other than they dont want to become disabled. Someone mentioned earlier its what you do after chair that counts now, it
I always wanted to buy a brand new hugh performance car, get hand controlsthen drive around awhile. At the end of the day put a good song on loud, get the car doing 160mph and run it right into a concrete overpass. Kind of like the old movie Vanishing Point. No seat belt on of course, t-tops
The answer is yes a c5 can drive independently. You would probally need to drive from your wheelchair. This means you need a dropped floor and a lock system for your chair. Also a power sliding door is a must. You would have to be evaluated to find out what type of hand controls you would need. Im
Hey, I was injured Jan 16 98 , was 21 at the time and a rookie police officer. I started driving my van just over two years post injury. My dad was against it but I went ahead with it anyway, now hes ok with the idea. In my six years of driving Ive had a few scary experiences. 1) I had a
Hey, ive been on a few trips, Lori is right take a bedside commode with you. Then all you have to do is make sure the room is accessible or at least the doors are wide enough where you stay. Remember that the average walking Joe thinks chairs fit through all doors, lol. As far as the bowell fun
Hey, Hows the lyrica doing now. Has it changed your pain level?ron
I have one of these, cost me 1700 to set up. Allows me to receive benefits and still have a savings noone can tap into. I have a tax man, a financial planner, and a lawyer working together to set me up when my ol man dies. With this trust no bad marriage or lawsuit can touch my money, and I dont
Hi, Lets face it the disabled community is getting screwed when the price for an adapted van is 50,000 to 90,000. Even with this being so, driving makes us feel human again, and may keep us out of depression. The option for lower level quads is to take your time and find a quality used van. A
Hi, I was having a hard time getting my 14fr hard rubber cathe tubes in past the spincter valve.Doctor told me that the worst case scenario was scar tissue, but it could be something simple as imflammation of the urethra. He told me to cathe as little as possible for the next few days and take
hi, My first van was a 1984 Ford full size van, with a crow river side lift, electric barn doors, swivel seat and hand controls...also had a 4 inch floor drop. I found the van in the paper the guy wanted 3500. I went to illinois to look at it and the old man pulled it out of a barn, 70s paint
Hi,Put toothbrush in mouth, then take toothpaste in both hands, squeeze on brush. leave cap off. after paste is on hold toothbrush in both hands and brush awayron
hi get one of those reach floss devices, looks like a toothbrush, has replaceable floss tips. you can hold just like a toothbrush. walmart has them.ron
Hi, Ive been a c7 quad for 9 years, 7 of those I have do 3 hours therapy every tues and thurs. Im strong as hell, but Im not going to walk away, at least anytime soon.If I had the chance for stem cells or any possible therapy to get on my feet or better myself I would take it. I would work 24
Hi, I just wanted to tell you that I read your story and from my point of view you have made a great life out of the dismal beginning after your injury. My hats off to you because you did all your accomplishments before the handicapped had any rights. Keep up the good work and you will have no
WellI think that the Roho cushions give you better protection against skin breakdown if you are at high risk. These cushions have two drawbacksthe first being they will puncture and need to be refilled occasionally, the second is if you can transfer they make it harder. The Jay gel
Hi, I know only a few of us have spinal syrinxes, but Im one of the few. Do you guys think that swimming and lifting weights will make the syrinx grow? I keep trying to continue my rehab twice a week, and wheel a few miles in an attempt to keep weight off and stay healthy.Somewhere in my mind I
Hey, I appreciate your answers, I hold together well for awhile then I fall apart mentally from time to time thinking I am screwing myself. I got to the YMCA twice a week and I dont want to give that up unless I absolutely have to. Im going to get another mri before the years outand judge what I
Hey, I was wondering if anyone has found a good supplement to promote healthy lubed up joints. Ive been pushing my but 9years and have just started having some pain in right shoulder. I know rest would probally help, which I dobut Im trying to find something to take that may give my shoulders
Hey, I havent heard from him in awhile. He lives in the actual city of St. Louis. Im in the burbs, actually St. Charles. I cant understand why he went into hiding, it seemed he found some therapy and things were rolling along. I guess we will find out soon enough, maybe hes dealing with a medical
I did not attend, planned on it but couldnt get myself in gear. I wanted to find out info on the extend power assist wheels. Ive considered getting a pair for my quickie 2 manual, but didnt know if they were reliable.plus im a tall guy and have always gotten 26 inch wheels on my chairs. As far
Hey guys, Im on 50mg of Amytriptyline b4 I go to bed each night. Been on it over two years, it helps pain some, but Ive noticed my gut is some bigger and we all know that sucks. Im trying to cut down to help situation.I want to try TopomaxIve read that this drug can help with nerve and
Hi, Has anyone had any luck with the new med lyrica? I remember Dan told me it didnt work for him. If anyone has had any luck how many mgs are u on? Thanks, ron
Hi, Ive been paralyzed 9 years in january. The first year I was injured I had pretty much pain. I started pushing around the neighborhood and the excercise seemed to help some. My pain level started easing up as the years went by until I reached the 5th year. At this point things changed
Hey,I have a Quickie p-222 power and chair and when the batteries went out after 2 yrs, I went to walmart and bought the deep cycle marine batteries. My dad put them in, he put mats under the batteries in case they would leak a bit here or there. Anyway they worked but the lights would always
Hey Bobbie,
Ive had a syrinx for about 4 years at c7 vertebrae. I was scared, angry and
confused when it was found through an mri. The best thing you can do at this
pont is go to your rehab doc and ask for an mri and see how big the syrinx is.
After that find a decent neurosurgeon that knows
Hey Dan T,
my mom had a tracphone was pretty good. You buy a phone card with so many
minutes on it at a store, punch in a cetain code and use the minutes. The
drawback is the minutes expire within a certain time period. Also, its only
good for emergency use, would be to expensive to use for
Hey,
I would think that 90-100 pounds is an accurate estimate for the weight of
the chair. To ship the chair I would think it would be between 300-500 dollars
because it has to be put on a crate. You could save money if you pick the chair
up at the nearing heavy freight dock. Should be one
Hey yall,
I was in the hospital getting my colonoscopy 2 years ago and the iv they put
in me caused me to go into dysreflexia. I watched my blood pressure go up on
the machine right b4 my eyes. I was scared as hell and neither the people
prepping me for the colonoscopy or my mother
Hey,
Ive been a quad for 9 years and yes Ive had some women come on to me, and yes
at least 2 of them were drawn to the chair. I think this is great, I welcome
females to talk to me and possibly do more with me. With all the problems a
quad has female or male, how could this even be an
Hi,
My dad made a deal with a local crematory here in st. louis. He gets picked
up after death, cremated, and put in an earn all for $700.00including the
earn. All I have to do is dial the number in his folder on his desk and its
done.
Ron
Hey,
I ended a 6 week career as a police officer by rolling a geo tracker softtop
over on a two lane blacktop highway. It happenned on Jan 16, 98 I was 21 years
old, had a new gf, new job and was living high. Now im a c7 quad, reality hit
me hard real fast. But Im still here, and after 6 yrs
Hey guys,
I live in the city of St. Peters, which is 25 miles outside St. Louis. The
area has been good to me since my c7 injury 9 years ago. Plenty of curb cuts
througout city, my subdivision is a wide street that is actually a three mile
oval. In these 9 years Ive went thousands of
Hey,
My paraplegic buddy was trying to clean an accident off his lift and he
flipped backwards from the highest position and landed on the back of his head.
Its a miracle he didnt break his neck, lol Hes in major pain but only had to
get stitches, the ambulance ride was interesting Im sure,
Ive got family in highridge, Mike and Verna Hucke. Thats not far from me here
in St. Peters
ron
Well,
The only thing that will make the general public change their ways and not
park in the handicap spaces is to hit them in the pocket book. Telling people,
begging, pleading, will not change people...THEY KNOW THEY ARE DOING WRONG
We need local police to step up and ticket these
Hi
I had the same problem and what my dad did was first take my ripped cushions
off the bowell chair I was using. Them he went to cloth world and bought some
colored vinyl. He sprayed some adhesive on the old cushion and stuck the new
vinyl on the top of the old cushion then wrapped it around
Paul,
I didnt mean to offend you. I have had understanding women, and women that
are from the bar. Being paralyzed makes sex a lil more complicated. It helps if
you know your partner well and understands whats involved.
ronc7.in the stl
Hey Dan,
I noticed in your post you said you were losing function in your arm. Is this
because of that syrinx? Im still dealing with mine, doc doesnt want to let me
get another mri because he says im not ready for surgery anyway. How often have
you been getting your mris?
3 years ago when they found a syrinx at c7 in my spinal cord I did extensive
research on the net. I found over and over Scott Falcis success stories and new
surgical techniques. I called Craig hospital, they said to send in my Mri. I
sent it to them and they called me and agreed to perform the
Has anyone considered the thought that after death their is nothing but a dirt
nap? That it doesnt matter what you did or didnt do in life we all end up the
same. That thousands of years ago some smart individual realized that human
beings have to believe in something to go on, and if they
Well..
I was 21 when I had my accident and am now 30. I had a chance to get married
to a woman 3 yrs ago and have dated a few since then. I think my greatest
obstacle is will the relationship be like it would have been when I was a
walking man, or will the woman control and treat me less
Hey
Im sorry I sold the chair to a paraplegic guy 2 months ago. Im not doing bad
by Quad standards, I havent had a uti in like 3 years, no pressure sores on my
butt yet, bowell routines are going pretty goodmy big complaint is the
new pain I started having when the syrinx was found.
Hey,
I read the arrogant comment to stay off drugs. Wellobviously this person
has no real pain because let me tell you this much, if you are in serious pain
that puts you in bed moaning and crying...you will try drugs.
People that have little or no pain think that those that use
as a quad we are up a creek with paddlesbut cant use them.lol,lol
ron c7
Hi,
I can hardly believe a magazine devoted to disabled persons would give advice
to keep your head down in public and dont speak, but if this is true people
need to boycott the magazine. Obviously the publishers are prejudice themselves
and in the business for a profit only.
I
Hi,
I just wanted to let all know that I got two trojan viruses my accepting a
false friend on myspace. The viruses were Moiling FH and Zlobl spyware. Just
wanted to let yall know.
Ron c7
Hi,
As far as applying a floor emergency brake pedal, I just bought an extention
rod with a ball on it from my mobility dealer. Now I had a hard time pulling
the plastic lever to release the brakemy dad drilled two holes in the
plastic lever and attached a zip tie through the
a four door is possible, just harder, if your short might be ok
Dan,
I have I believe the same Guardian shower chair as we talked about b4. I
purchased new front casters from Sportaid for the shower chair. The forks are
rusty from bad bearings, the forks never go bad. I had a new seat made from
Adaptability in St. Louis free of charge. they measured me
The PT Cruiser as an accessible vehicle is a joke. The ramp is so steep you
need 4 wheel drive, not to mention no room to meneuver. Whoever designed this
vehicle doesnt have a clue on accessibility. Vans have been used for 30 yrs for
a reason.
Ron c7
Hello,
My feet and ankles swell during the day and go down at night just as W said.
That is strange if the opposite is going on.
I saw the Guardian stainless shower chair on the Sportaid website for $799.00
and I believe thats free shipping. Just wanted to let you know Dan.
Ron c7
The reason the rear drive wheels were burned off is because they are attached
to the gear box and the wheels were basically held like a brake. The front ones
roll free , but at 50mph im surprised they withstood without going into speed
wabble.
The man is the luckiest person on the planet.
Just a quick note Ill throw in,
You can have all the positive mindeset in the world, but when you need help
with things like bowell routines and showers...no quad no matter what
mindset does it alone
It takes a positive mindset with the realization that you need a network of
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