I was injured in 1994, c 6-7. For the past couple of years, I have had muscle tension and pulling in one section of my torso. It's like someone with cerebral palsy. My stomach muscles are clear to the left side of my body. It just pulls and pulls and pulls and pulls. I already have a baclofen pump which I know is working. Is there any way to combat this?
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Twisting torso
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Keeping cool
Has anyone tried one of those 1-room cooling systems? Not the generic fan kind, something like this:
http://www.ebay.ca/itm/Dyson-Officia...item23683d6e13
I'm dreading the hot weather and need a solution for keeping my den cool (2 computer stations running 14 hours per day).
Thanks!
http://www.ebay.ca/itm/Dyson-Officia...item23683d6e13
I'm dreading the hot weather and need a solution for keeping my den cool (2 computer stations running 14 hours per day).
Thanks!
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New Aluminum and steel alloy compared to titanium.
I have just read a little about this material but it's comparable to titanium in strength and lightness and costs 1/10 to produce compared to ti. This could possibly bring the cost of a light weight chair down considerably if used, maybe?
http://www.sciencealert.com/new-supe...-times-cheaper
http://www.sciencealert.com/new-supe...-times-cheaper
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Hotels in Newport, Rhode Island
Hi All,
I may be going on a small trip w/family to Newport, RI in Aug. and was hoping to get some WC friendly hotel recommendations, any info is greatly appreciated. Thanks!
I may be going on a small trip w/family to Newport, RI in Aug. and was hoping to get some WC friendly hotel recommendations, any info is greatly appreciated. Thanks!
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Bowel Program Frustration Please Help!
Hello everyone!
i am a c6 quad, I do bowels on Monday, Wednesday, and Friday mornings with a magic bullet and dig stim. On the days I do do my bowel program, almost always in the afternoon I will have red slime with clear discharge come out in my pants. It is SUPER frustrating and I don't know why it is happening, am I over stimulating or something? Does this happen to anyone else? Any ideas on how to fix it?
any help would be AWESOME!
i am a c6 quad, I do bowels on Monday, Wednesday, and Friday mornings with a magic bullet and dig stim. On the days I do do my bowel program, almost always in the afternoon I will have red slime with clear discharge come out in my pants. It is SUPER frustrating and I don't know why it is happening, am I over stimulating or something? Does this happen to anyone else? Any ideas on how to fix it?
any help would be AWESOME!
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Happy Mother's Day
My mom loved roses. For mothers and mothers at heart. -ket
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Bike-on Quad Elite Carbonbike
Big NEWS! We will now be offering our QUAD ELITE system on Carbonbikes. Taking Quad riding to the next level.
Email me for pricing, I will be offering special pricing on the first 5 builds. John@bike-on.com
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Email me for pricing, I will be offering special pricing on the first 5 builds. John@bike-on.com
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C5-6 handcycling no triceps
Just need the right equipment. 26.5 miles.
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WTB: synchronous hand ergometer
Any recommendations?
Any that I can find new either don't do synchronous or they're crazy expensive...
Any that I can find new either don't do synchronous or they're crazy expensive...
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Rochester male catheters, CHEAP or free
I have about 300 cathers to get rid of. mainly rochester 16fr male personal catheters with 50 or so of the magic 3 16fr mixed in the bunch. I switched to coloplast and have no use for these. $20 plus the estimated shipping costs? Or, free with the purchase of this used Icon wheelchair for $1000:
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how to treat bone loss in a SCI patient during menopause?
I've been a C5/6 quad for 15 years now and have really healthy bones until menopause hit. now I have 10% bone loss in 1 hip. my SCI doctor has put me on fosomax. my ob/gyn is hesitant to put me on hormones because of the blood clot risk. should I just do the fosomax and re-evaluate after my next yearly dexascan?
I'm also on calcitonin, take a good quality calcium w/magnesium and D3. I don't drink carbonated beverages. unfortunately, I don't stand either (long story)
Wise? SCI nurse?
I'm also on calcitonin, take a good quality calcium w/magnesium and D3. I don't drink carbonated beverages. unfortunately, I don't stand either (long story)
Wise? SCI nurse?
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Looking to buy K y jelly 4 oz tubes and magic bullets.
Contact me if you have k y jelly 4 oz tubes or magic bullets that you want to sell.
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Low Iodine - Red Dyes - Colrite Stool Softener
I have to be on a low Iodine diet for the next three weeks in prep for a scan I have to have - Part of my BP routine is to take Colrite stool softener twice a day. However, colrite contains red dye in the outer gelcap. I consulted my pharmacy for a replacement and the only thing he found on the shelf was a laxative instead of a stool softener. Any suggestions out there? Should I take the laxative or skip that part while on the Iodine restriction? My BP works well as is, and I would hate to throw a wrench either way.
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Quad handcycle
HI, IM LOOKING FOR A HANDCYCLE, I NEED SOMETHING CHEAP TO START IN THE SPORT , I HAVE PLANS TO DOED PROFESIONAL BUT ONLY UNTIL I GET A GOOD CONDITION. I NOW THAT MANY HANDCYCLERS RENEW THE BICYCLES SO AN USED UNIT WILL BE FINE FOR ME.
THANKS. jesus
THANKS. jesus
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Hand controls
Finally, i have the installation for my truck. After a big search i find this controls only for 50 dlls !! And free installation !!!!!!!!!!
I now that its not the right possition for the controls but works !!
Now im looking for a handcycle , so if anyone have something in the garage please let me now.
I now that its not the right possition for the controls but works !!
Now im looking for a handcycle , so if anyone have something in the garage please let me now.
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Top End XLT handcycle review
Thought I would post a review of the Top End XLT handcycle. I have yet to find a solid source for handcycle info, so maybe this will help someone.
I?ve been riding handcycles for 22 years (T-6 para) and have been on a Freedom Ryder for all of that time except for the last 2 years on this trike. The XLT has several things going for it, but two things definitely not going for it. I decided to get away from the Freedom Ryder because I don?t need 21 speeds (never did, really) with all the equipment that goes along with a derailleur. I was tired of dealing with a greasy chain and gear set. The XLT appealed to me because of the Shimano Nexus enclosed gear system. It took a lot for me to change because I love lean steer trikes and Mike at Freedom Ryder is a class act with customer service at the top of his list.
Anyway, the XLT has a nice seat, good leg supports, and a simple, easy to shift enclosed gear system. It also has a poor chain guide system with no tension idlers and is geared to the moon in stock configuration. Those are the two things that almost killed the deal for me. Luckily, I had an old crank from a Freedom Ryder that had a 74mm BCD (bolt circle diameter). This allowed me to mount a small ?granny? cog as shown in the picture. I?ve gone from the original 38T sprocket to a 28T sprocket. This has made the first 4 gears usable, where as the stock gearing required the strength of the Hulk to use more than the first three gears, and that was pushing it. I?m planning on installing a 24T to let me use maybe one more gear. The chain guide system still stinks, but I?ve learned to keep a close eye on the chain tension and adjust it the minute I start to see some slack.
The Shimano Nexus system is great. You can shift it rolling or sitting still; it doesn?t matter. So if you have to stop unexpectedly, you can shift to first to help you get rolling again. The gears are all enclosed, so no excess grease and grunge falling off on your garage floor. It also has a built in brake, so you just reverse the crank to apply the brake. The bike also comes with a backup cantilever rim brake.
So here?s the bottom line, for me anyway. I?m getting old and just cruise the neighborhood anymore. No long distance riding. This bike is great for that. I would not recommend it stock because of the gearing. But if you can change the gearing yourself or have it changed, it is a good alternative to a bike with a derailleur. I still miss my lean steer, but this trike offers a lot for the casual rider. Just get the gearing changed.
I?ve been riding handcycles for 22 years (T-6 para) and have been on a Freedom Ryder for all of that time except for the last 2 years on this trike. The XLT has several things going for it, but two things definitely not going for it. I decided to get away from the Freedom Ryder because I don?t need 21 speeds (never did, really) with all the equipment that goes along with a derailleur. I was tired of dealing with a greasy chain and gear set. The XLT appealed to me because of the Shimano Nexus enclosed gear system. It took a lot for me to change because I love lean steer trikes and Mike at Freedom Ryder is a class act with customer service at the top of his list.
Anyway, the XLT has a nice seat, good leg supports, and a simple, easy to shift enclosed gear system. It also has a poor chain guide system with no tension idlers and is geared to the moon in stock configuration. Those are the two things that almost killed the deal for me. Luckily, I had an old crank from a Freedom Ryder that had a 74mm BCD (bolt circle diameter). This allowed me to mount a small ?granny? cog as shown in the picture. I?ve gone from the original 38T sprocket to a 28T sprocket. This has made the first 4 gears usable, where as the stock gearing required the strength of the Hulk to use more than the first three gears, and that was pushing it. I?m planning on installing a 24T to let me use maybe one more gear. The chain guide system still stinks, but I?ve learned to keep a close eye on the chain tension and adjust it the minute I start to see some slack.
The Shimano Nexus system is great. You can shift it rolling or sitting still; it doesn?t matter. So if you have to stop unexpectedly, you can shift to first to help you get rolling again. The gears are all enclosed, so no excess grease and grunge falling off on your garage floor. It also has a built in brake, so you just reverse the crank to apply the brake. The bike also comes with a backup cantilever rim brake.
So here?s the bottom line, for me anyway. I?m getting old and just cruise the neighborhood anymore. No long distance riding. This bike is great for that. I would not recommend it stock because of the gearing. But if you can change the gearing yourself or have it changed, it is a good alternative to a bike with a derailleur. I still miss my lean steer, but this trike offers a lot for the casual rider. Just get the gearing changed.
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Flap Surgery for Pressue Ulcer
Had flap surgery, Monday, May 22. All went well. My ischiel bone was scraped and smoothed. Two muscles and flesh were pulled into place to construct the flap. Biopsies of the bone revealed a staphylococcus infection, however, according to Doc, appears benign.
Now on Clinitron bed, with no movement that would irritate the flap, that could prevent adhesion of the muscles covering my ischiel bone. In total I expect to be in hospital seven weeks, most spent in bed.
I am in Augusta, Ga. VA hospital. Receiving fabulous treatment from tremendous doctors, PAs nurses, LPNs and other care givers.
First pressure sore in nearly 15 years.
Now on Clinitron bed, with no movement that would irritate the flap, that could prevent adhesion of the muscles covering my ischiel bone. In total I expect to be in hospital seven weeks, most spent in bed.
I am in Augusta, Ga. VA hospital. Receiving fabulous treatment from tremendous doctors, PAs nurses, LPNs and other care givers.
First pressure sore in nearly 15 years.
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Bladder Augmentation (Ileocystoplasty) scheduled for this week, questions / concerns
Hello forum, I've been reading about some peoples experiences with their augmentation but would like to know some other information as well if anyone who has had this done, especially recently, would care to respond.
I'm scheduled to have this done this week and would like to know what your actual recovery time was like, how long until you were able to drive (lift your chair into the care yourself, etc.) and what was involved in post surgery care (how often you have to irrigate the bladder while it is healing and how long you have to continue to do so after it's healed, is it a forever thing or only for a few months that it keeps producing mucus, etc).
Did you have any issues with bowls afterword or accidents, my biggest concern as I don't want to exchange one "manageable" problem (leaking) with an even bigger one. Any change in diet, liquid intake etc?
If you had it done to prevent leaking or reduce bladder pressure, did you still have any leaking issues afterword?
Any other info or advice would be appreciated and thanks in advance.
I'm scheduled to have this done this week and would like to know what your actual recovery time was like, how long until you were able to drive (lift your chair into the care yourself, etc.) and what was involved in post surgery care (how often you have to irrigate the bladder while it is healing and how long you have to continue to do so after it's healed, is it a forever thing or only for a few months that it keeps producing mucus, etc).
Did you have any issues with bowls afterword or accidents, my biggest concern as I don't want to exchange one "manageable" problem (leaking) with an even bigger one. Any change in diet, liquid intake etc?
If you had it done to prevent leaking or reduce bladder pressure, did you still have any leaking issues afterword?
Any other info or advice would be appreciated and thanks in advance.
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i'm in quite the predicament
I can't manage my dysreflexia anymore, it used to be nonexistent i used to be confused when people talked about getting autonomic dysreflexia! Then 2 1/2 years or so after the injury, I got it every time the catheter was blocked,urinating through the penis etc. then it started to happen every time I had a bowel movement or they did a "touch" during care. I've gotten advice about these problems from here, which is what led me to getting a much larger catheter, and trying to obtain numbing cream for BP. Then it started to happen when my testicles were in a bad spot my spasms literally trying to crush them so I have two things in between my legs right now, they're pulled up it can't be that. And that has been the protocol for the last few months since this started I can't wear shoes because my skin has finally become so fragile and the spasms are so bad I have to wear these ridiculous foam Afos and have my legs double strapped with tensor bandages, I also have to have a ridiculous pillow strapped in between my thighs constantly.
Sometimes spasms cause a D which is troubling because I'm worried about my bones, lately at physiotherapy when doing stretches I start sweating the dysreflexia is so bad, I haven't sweat since my accident! Which leads me to a serious problem that is a great concert, I can no longer lay in bed anymore especially if I want to sleep the spasticity has just gotten worse and worse to the point where if I get in bed I am thrown around like a ragdoll left side to the right side legs up and down scraping against child is bashing the knees together constantly out a few times every hour like it used to. But I found a solution$10,000 leg braces that actually flex with the spasms so it's not so hard on the leg their spring loaded so once the spasm release my leg then go straight thanks to the braces, once these are on my legs actually calm down for whatever reason, but even if they don't I am Straight so I can at least get a few hours sleep. The problem is even though these braces are smart and are as flexible on the bone as possible, fact is my bones continue to get weaker and weaker I am genuinely worried about a break or fracture. But if I don't wear those braces I can't go in bed, it's physically dangerous for numerous reasons, it's impossible to sleep, and frankly it'll drive me to madness my body has control over me now and I feel like a complete useless bitch. But as I sit here right now I literally can't stop going dysreflexic it's a affecting my skin my hair standing on endmy blood pressure is going up and down cause and chills and headache. The left side of my brain is very painful and the back of my eye hurts quite a bit as well .
It's at least every 3 to 5 minutes it comes back in different intensities, I've taken two painkillers I gave and I couldn't take it hydromorphone. I'm not pissing myself, I'm not shitting myself the boys are in a safe position the only thing I can think of is a bad fracture. I have no bruising no signs, and sometimes my legs will move and spasm without causing it. I'm due to get a new bone density scan here soon. And I understand the standard protocol with my doctor is to go to the ER, but I go there they don't even take it seriously half them don't even know what it is. Then doublechecking my urine and prescribed antibiotics that I'm probably resistant two because I kept going to the ER, now I'm facing risk of dying from antibiotic resistant bugs as my last urine culture had basic bugs that were resistant to every oral antibiotic, turned superbugs. The good thing is I think I have found a solution it's probably temporary but it's good for now because once I start jumping into iv antibiotics it won't be long till I get you know "the" superbug and I won't even make it to my settlement to leave money behind.
I'm only four years post and it seems like everything has gotten worse, nerve pain to osteoporosis all of that. I basically have to stay indoors constantly now because of the dysreflexia, the rare time my friends get together and invite me out I can't go because I'm not going to get them check my balls and my ass etc. It's almost making me superstitious, just the ugly consistency with it. Maybe it finally is renal failure they've been through a lot when I used to just reflex void, into a condom catheter even when I started ICs I couldn't get someone to do it during the night and it still pushed urine out even with the pills. And the super pubic catheter hasn't been a bulletproof run either. And you know what I plug the catheter every other day to let the bladder fill up as much as I can and the second I start getting ad I pulled it out not safe but I hope to regain bladder function one day that requires a bladder that can hold urine
I've made all the changes that my body has basically forced upon me, I used to do bow care every other day for my own mental respect but also so that sometimes I could just go out with my friends for the night and they could throw me on the couch or something,and I'd be all right as long as they drain my leg bag. And it worked for the first three years, and then randomly I started going disflexic the day I did not do it like bad,after a lot of denial believing that wasn't the reason, then just plain stubbornness saying I'd rather die than do it every other day ( worthy of respect but obviously I couldn't commit weakness I know but it wasn't killing me just severely hurting). So now I do it every day, I take my bladder pills, I wear the boots every day, I put the stupid pillow in between my thighs every day, I go to the doctors, I go to the seating clinic, do the test at the urology office I follow the cripple (high comp quad) protocol now, I eat a fantastic diet measuring all my nutrients. But the relief is always temporary, which is infuriating because all of this requires me to expect more help and it greatly affects how much leniency in my schedule and what I can do! I make all the sacrifices including self-respect to no avail. The only thing I won't do is megadosing baclofin because I know that has implications on the body especially pertaining to recovery, and in a lot of clinical trials it's an exclusion criteria, I have always avoided pills but this life is basically forcing them down my throat and I despise that I do not want to be taking these and there's numerous that I apparently should be taken, and given the fact of my secondary complications being very severe The injury is basically trying to enforce that
I'm sorry to rant this isnt the first day truth be told it's been like this for the last three months so much dysreflexia that I just can't manage, I figure one thing out another thing comes up, some days it is non-stop all of us higher injuries knows how bad it is I will admit it's not the severe dysreflexia when your blood pressure you know quadruples you can't even open your eyes because they're going to explode but let's be honest if I had that for four hours straight I would be long dead even with my youth. Nonetheless I'm still experiencing all the symptoms just not in the extremely severe case,but there periodically consistent I can't stop it and of course yeah it hurts but it's driving me absolutely insane. Nerve pain is bad, and it can be very very bad,but constant bad AD completely overshadows it and apparently it's a whole hell of a lot more dangerous really hard on the body.
I literally don't know what to do there's no autonomic dysreflexia specialist to my understanding, I'm mean for the first time in four years I'm finally going to see an infectious disease specialist you know after a monthly symptom causing infection because of a seriously unlucky high-pressured neurogenic bladder since my injury probably should've seen him long ago, but now it's getting serious time to go see one frig doctors are no help, unless you want a pill even still they can be useless,often times I go to the ER and tell them what to do and know Iam much more informed with anything to do with spinal cord injury. Has anyone had this problem consistent uncontrollable undiagnosable autonomic dysreflexia what did you do? Do you just tolerate it and Cross your fingers, high dose on strong painkiller every day hope that numbs you enough!?
For god sake's it's been so bad these past months, with no help that my mother and I have had to have a long serious talk about a stroke protocol
Sometimes spasms cause a D which is troubling because I'm worried about my bones, lately at physiotherapy when doing stretches I start sweating the dysreflexia is so bad, I haven't sweat since my accident! Which leads me to a serious problem that is a great concert, I can no longer lay in bed anymore especially if I want to sleep the spasticity has just gotten worse and worse to the point where if I get in bed I am thrown around like a ragdoll left side to the right side legs up and down scraping against child is bashing the knees together constantly out a few times every hour like it used to. But I found a solution$10,000 leg braces that actually flex with the spasms so it's not so hard on the leg their spring loaded so once the spasm release my leg then go straight thanks to the braces, once these are on my legs actually calm down for whatever reason, but even if they don't I am Straight so I can at least get a few hours sleep. The problem is even though these braces are smart and are as flexible on the bone as possible, fact is my bones continue to get weaker and weaker I am genuinely worried about a break or fracture. But if I don't wear those braces I can't go in bed, it's physically dangerous for numerous reasons, it's impossible to sleep, and frankly it'll drive me to madness my body has control over me now and I feel like a complete useless bitch. But as I sit here right now I literally can't stop going dysreflexic it's a affecting my skin my hair standing on endmy blood pressure is going up and down cause and chills and headache. The left side of my brain is very painful and the back of my eye hurts quite a bit as well .
It's at least every 3 to 5 minutes it comes back in different intensities, I've taken two painkillers I gave and I couldn't take it hydromorphone. I'm not pissing myself, I'm not shitting myself the boys are in a safe position the only thing I can think of is a bad fracture. I have no bruising no signs, and sometimes my legs will move and spasm without causing it. I'm due to get a new bone density scan here soon. And I understand the standard protocol with my doctor is to go to the ER, but I go there they don't even take it seriously half them don't even know what it is. Then doublechecking my urine and prescribed antibiotics that I'm probably resistant two because I kept going to the ER, now I'm facing risk of dying from antibiotic resistant bugs as my last urine culture had basic bugs that were resistant to every oral antibiotic, turned superbugs. The good thing is I think I have found a solution it's probably temporary but it's good for now because once I start jumping into iv antibiotics it won't be long till I get you know "the" superbug and I won't even make it to my settlement to leave money behind.
I'm only four years post and it seems like everything has gotten worse, nerve pain to osteoporosis all of that. I basically have to stay indoors constantly now because of the dysreflexia, the rare time my friends get together and invite me out I can't go because I'm not going to get them check my balls and my ass etc. It's almost making me superstitious, just the ugly consistency with it. Maybe it finally is renal failure they've been through a lot when I used to just reflex void, into a condom catheter even when I started ICs I couldn't get someone to do it during the night and it still pushed urine out even with the pills. And the super pubic catheter hasn't been a bulletproof run either. And you know what I plug the catheter every other day to let the bladder fill up as much as I can and the second I start getting ad I pulled it out not safe but I hope to regain bladder function one day that requires a bladder that can hold urine
I've made all the changes that my body has basically forced upon me, I used to do bow care every other day for my own mental respect but also so that sometimes I could just go out with my friends for the night and they could throw me on the couch or something,and I'd be all right as long as they drain my leg bag. And it worked for the first three years, and then randomly I started going disflexic the day I did not do it like bad,after a lot of denial believing that wasn't the reason, then just plain stubbornness saying I'd rather die than do it every other day ( worthy of respect but obviously I couldn't commit weakness I know but it wasn't killing me just severely hurting). So now I do it every day, I take my bladder pills, I wear the boots every day, I put the stupid pillow in between my thighs every day, I go to the doctors, I go to the seating clinic, do the test at the urology office I follow the cripple (high comp quad) protocol now, I eat a fantastic diet measuring all my nutrients. But the relief is always temporary, which is infuriating because all of this requires me to expect more help and it greatly affects how much leniency in my schedule and what I can do! I make all the sacrifices including self-respect to no avail. The only thing I won't do is megadosing baclofin because I know that has implications on the body especially pertaining to recovery, and in a lot of clinical trials it's an exclusion criteria, I have always avoided pills but this life is basically forcing them down my throat and I despise that I do not want to be taking these and there's numerous that I apparently should be taken, and given the fact of my secondary complications being very severe The injury is basically trying to enforce that
I'm sorry to rant this isnt the first day truth be told it's been like this for the last three months so much dysreflexia that I just can't manage, I figure one thing out another thing comes up, some days it is non-stop all of us higher injuries knows how bad it is I will admit it's not the severe dysreflexia when your blood pressure you know quadruples you can't even open your eyes because they're going to explode but let's be honest if I had that for four hours straight I would be long dead even with my youth. Nonetheless I'm still experiencing all the symptoms just not in the extremely severe case,but there periodically consistent I can't stop it and of course yeah it hurts but it's driving me absolutely insane. Nerve pain is bad, and it can be very very bad,but constant bad AD completely overshadows it and apparently it's a whole hell of a lot more dangerous really hard on the body.
I literally don't know what to do there's no autonomic dysreflexia specialist to my understanding, I'm mean for the first time in four years I'm finally going to see an infectious disease specialist you know after a monthly symptom causing infection because of a seriously unlucky high-pressured neurogenic bladder since my injury probably should've seen him long ago, but now it's getting serious time to go see one frig doctors are no help, unless you want a pill even still they can be useless,often times I go to the ER and tell them what to do and know Iam much more informed with anything to do with spinal cord injury. Has anyone had this problem consistent uncontrollable undiagnosable autonomic dysreflexia what did you do? Do you just tolerate it and Cross your fingers, high dose on strong painkiller every day hope that numbs you enough!?
For god sake's it's been so bad these past months, with no help that my mother and I have had to have a long serious talk about a stroke protocol
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Sodium Chloride water or Sterile water for Indwelling Catheter's ballon?
Suddenly got mixed up which should I use for Indwelling Catheter? Had a sudden increase of sediments which cause frequent blockage, with no urine infection(did a test already). My mum suddenly told me that the catheter seller said we should use sterile water instead of sodium chloride water. As the package looks the same, I don't if I got it mixed up.
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