It has been many years since I went on my first cruise. I use a motorized wheelchair that I drive with my left hand. Sometimes, if a ramp is very steep I have a little trouble maneuvering. I was wanting some input on boarding the ship. In advance, thank you.
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Boarding Enchantment of the Sea's (Royal Caribbean) initial arrival
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Intereting control of car by quad - 152 mph Corvette
Not sure where to post this, Life or Equipment.
Quad and 152mph Corvette
http://www.gizmag.com/sam-schmidt-au...orvette/43476/
Quad and 152mph Corvette
http://www.gizmag.com/sam-schmidt-au...orvette/43476/
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Skeet shooting quad😵
I'm a C7 quad and ive been trying to figure out how to shoot skeet and trap for years and finally got a chance to do it last weekend in Alabama.
The set up was awkward. Shoulder harness held the butt and the barrel was resting on a loop of rope hanging down. This really limited my range of motion. I don't have hand function so I used the sip n puff trigger. My core is shit so I couldn't really pivot to adjust aim.
I've seen cabelos gun mount that may give the support I need and range of motion but it seems like it would be awkward as well. Any suggestions?
The set up was awkward. Shoulder harness held the butt and the barrel was resting on a loop of rope hanging down. This really limited my range of motion. I don't have hand function so I used the sip n puff trigger. My core is shit so I couldn't really pivot to adjust aim.
I've seen cabelos gun mount that may give the support I need and range of motion but it seems like it would be awkward as well. Any suggestions?
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Supra pubic discretion
I'm constantly struggling with hiding my leg bag while wearing shorts. Either I hike up the bag and the catheter gets kinked, or pull it out and my shorts ride up. Also the leg bags I get come with those elastic bands that I cannot do myself, any suggestions?
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Have an old power chair I need to dispose of
I have a 14 year old Permobil Chairman that I need to get rid of. It's not in very good condition so don't think anyone would want it, so basically just need to throw it away. But where? What have others done with their old chairs?
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First Friday Open House, June 3rd.
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Anyone purchase from Universalmed Supply of Irving Texas?
Attempting to obtain a Lateral Rotation mattress via Medicare and my wound care physician.
Anyone have war stories to share?
Anyone have war stories to share?
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graf jacket
Has anyone had experience with the graf jacket? I can only find one reference to it here and its almost 2 years old.
thanks
thanks
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Friends, how many did you lose? How many do you still have?
Ah friends, I was injured three months into my 20s so naturally I had quite a few friends. From the gym, from the club, from high school, some lifelong I had five friends that I grew up with since grade 1 went through everything together our entire youth. Those kinds of friends are precious, and I don't think much in this life is; Your child and Friends you grew up with. Some might say true love, but I've seen so many examples in my short time of "true love" turn into the worst of enemies, or elderly life of regret or simply contentment. As for life as a whole being precious, not so much Lol.
since I decidedbasically right after I realized The full implications of this injury, that I going to ask for as little help as possible; if this is the way it is I don't need to be constantly leeching, saying please 60 times a day can feel like begging and is very "taxing" mentally. Making that decision obviously has implications on your already inevitably affected social life. Passing the burden on to my friends never sat well with me though, mostly it was just emptying the leg bag, maybe grab something out of my backpack (this was before my AD and spasticity got of control now there's more to be addressed). I digress, overtime I've spent quite a bit of time on this fourm, and I can very blatantly see that loneliness is a serious issue after SCI (The defensive will claim that loneliness ( or losing friends) is a part of life no matter what, but the many different "variables" after SCI that make it MUCH more likely, hastily and impactful are right there, there's no denying it even if you remained lucky in this regard). Not everybody doesn't have friends after SCI far from it, but I was just thinking how interesting a study of groups of paraplegics vs groups of quadriplegics would be on their social life after injury. Of course at this point I could only make assumptions (I wish there actually were studies like this on various aspects of health and life after SCI comparing different levels because paraplegia and quadriplegia are completely different in EVERY aspect and shouldn't be associated at all, even every cervical vertebrae is completely different). But I feel like the implications of a C5+ compared to a T 12 in terms of social life are self-explanatory, people tend to gravitate towards the easiest most enjoyable options someone that can drive to them, take care of themselves entirely,get in anywhere etc. There's no worries or responsibilities, sometimes I think my friends see me as an obligation a responsibility sort to speak, which obviously and evidently isn't the most attractive option,and despite my best attempts ( Bringing my feeding cuff, tolerating A.D. spasticity, Never complaining or saying anything about it, etc) I think it slowly wore them out despite being a rare occasion, things had to be done and accidents happen... They seemed most comfortable when they stop by my house for an hour or two, when my parents or caregiver were there to handle everything, which is completely understandable... But unfortunate obviously.
I'm starting this rant after I've been sleeping on a pullout couch for months, finally moved into a decent size condo so I can bring up my hospital bed (so I can finally sit my bed/self up) but I can't drive down and load it up myself, So I offered to pay one of my friends I grew up with! He refused to get paid, explained he'd be beyond happy to do it but that he was busy so we went through his schedule and work out a weekend about A month away so I waited patiently, he also explained that hed rather it not be a workday so he could come up and hang out with me for the night. That was this weekend, when I messaged him to see if we were good he explained he wouldn't be able to make it because he has a golf tournament which of course we both knew about but because Monday was a holiday he'd be fine at the time we made the plans. I'm not mad at him or spiteful in the slightest, i'm glad he's out there enjoying his youth truthfully. But many of times I've made plans over the years with this group of guys individually and almost always "something" comes Up or I just don't get a response the day of. I'd really just respect honesty, I wouldn't be offended or hurt in the slightest if they just said man I got better things to do but nobody does that in any case; other than me back in the day when I had better things to do, but honestly I never bailed on the boys, I could be at a family arrangement then they could call me about a fight or flat tire and I drive my ass there to help. Which is another thing that I disregarded it's easy for me to think I would do more for them if the situation was reversed, and I probably guaranteed would have at first but we were all 20 when it happened, Life gets busy being able to mutually participate in a meet up is vital to make it easy for both parties to keep friendships together,I imagine overtime my appearance would get rare. School, construction work, boxing, the gym, a woman would've taken up most my time by choice of course. But the fact is most people I knew we're gone the day after SCI other than one or two Facebook messages from a few.
since I decidedbasically right after I realized The full implications of this injury, that I going to ask for as little help as possible; if this is the way it is I don't need to be constantly leeching, saying please 60 times a day can feel like begging and is very "taxing" mentally. Making that decision obviously has implications on your already inevitably affected social life. Passing the burden on to my friends never sat well with me though, mostly it was just emptying the leg bag, maybe grab something out of my backpack (this was before my AD and spasticity got of control now there's more to be addressed). I digress, overtime I've spent quite a bit of time on this fourm, and I can very blatantly see that loneliness is a serious issue after SCI (The defensive will claim that loneliness ( or losing friends) is a part of life no matter what, but the many different "variables" after SCI that make it MUCH more likely, hastily and impactful are right there, there's no denying it even if you remained lucky in this regard). Not everybody doesn't have friends after SCI far from it, but I was just thinking how interesting a study of groups of paraplegics vs groups of quadriplegics would be on their social life after injury. Of course at this point I could only make assumptions (I wish there actually were studies like this on various aspects of health and life after SCI comparing different levels because paraplegia and quadriplegia are completely different in EVERY aspect and shouldn't be associated at all, even every cervical vertebrae is completely different). But I feel like the implications of a C5+ compared to a T 12 in terms of social life are self-explanatory, people tend to gravitate towards the easiest most enjoyable options someone that can drive to them, take care of themselves entirely,get in anywhere etc. There's no worries or responsibilities, sometimes I think my friends see me as an obligation a responsibility sort to speak, which obviously and evidently isn't the most attractive option,and despite my best attempts ( Bringing my feeding cuff, tolerating A.D. spasticity, Never complaining or saying anything about it, etc) I think it slowly wore them out despite being a rare occasion, things had to be done and accidents happen... They seemed most comfortable when they stop by my house for an hour or two, when my parents or caregiver were there to handle everything, which is completely understandable... But unfortunate obviously.
I'm starting this rant after I've been sleeping on a pullout couch for months, finally moved into a decent size condo so I can bring up my hospital bed (so I can finally sit my bed/self up) but I can't drive down and load it up myself, So I offered to pay one of my friends I grew up with! He refused to get paid, explained he'd be beyond happy to do it but that he was busy so we went through his schedule and work out a weekend about A month away so I waited patiently, he also explained that hed rather it not be a workday so he could come up and hang out with me for the night. That was this weekend, when I messaged him to see if we were good he explained he wouldn't be able to make it because he has a golf tournament which of course we both knew about but because Monday was a holiday he'd be fine at the time we made the plans. I'm not mad at him or spiteful in the slightest, i'm glad he's out there enjoying his youth truthfully. But many of times I've made plans over the years with this group of guys individually and almost always "something" comes Up or I just don't get a response the day of. I'd really just respect honesty, I wouldn't be offended or hurt in the slightest if they just said man I got better things to do but nobody does that in any case; other than me back in the day when I had better things to do, but honestly I never bailed on the boys, I could be at a family arrangement then they could call me about a fight or flat tire and I drive my ass there to help. Which is another thing that I disregarded it's easy for me to think I would do more for them if the situation was reversed, and I probably guaranteed would have at first but we were all 20 when it happened, Life gets busy being able to mutually participate in a meet up is vital to make it easy for both parties to keep friendships together,I imagine overtime my appearance would get rare. School, construction work, boxing, the gym, a woman would've taken up most my time by choice of course. But the fact is most people I knew we're gone the day after SCI other than one or two Facebook messages from a few.
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EasyStand Glider 6000, For Sale, Bend Oregon
Hey All, I have a 10 year old Easy Stand Glider 6000 in working condition, some wear on grips and small hole in upholstery, also I don't have the torso support piece. I'm in Bend Oregon, and will consider delivering anywhere from San Fran up to Seattle, possible Boise or Salt Lake as well, $1 a mile. I have the frame listed on eBay now for $2000, hoping to get atleast 1500 for it. If you'd like to arrange for freight thats fine. Let me know, thanks! Jordan 5416136743
http://www.ebay.com/itm/222121411095
http://www.ebay.com/itm/222121411095
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Project Walk of Los Angeles... My SCI rehab
Hi everyone! My name's Keith. I broke my neck in a motorcycle accident in 2009. When I woke up from my coma, I was paralyzed from the neck down! I had a C5 spinal cord injury. What?... Life has been a journey nonetheless... I recently connected with a SCI rehabilitation facility located in Los Angeles. I work with Heather and my boy G dog (Garrett) at Project Walk. ProjectWalk.com. What a amazing facility! My friends come to the parking lot, help me out of my car into my wheelchair, then roll me inside. From there, one person lifts me from under my arms from behind, while the other lifts m from under my knees onto the padded table. This is how I am moved around here. Standing frame, total gym, many types of exercise equipment designed for people with spinal cord injuries. I have been to many physical rehabilitation centers here in California. I have found no other facility more accommodating to my circumstances, then this one.
My body is stretched out in ways the wheelchair prevents. My muscles are stimulated using something called a FES machine. https://www.mstrust.org.uk/a-z/funct...timulation-fes . My muscles are reacting and firing after seven years of nothing. It's crazy! I cannot move or let alone feel my legs. But, they feel relaxed and calm in a way I have never felt before. Thanks guys!
I am honored to call myself the new "Ambassador" of Project Walk Los Angeles. Anyone with a spinal cord injury. From severe to mild, high injury to low injury, complicated or not. Come check this place out! I assure you, if you have been let down in the past by recovery facilities either not having the proper equipment or knowledge to assist someone with a spinal cord injury. You will not be disappointed here. I have been let down so much. I took the fight home. But here, I'm straight...
? Keith
Project Walk of Los Angeles Amb.
My body is stretched out in ways the wheelchair prevents. My muscles are stimulated using something called a FES machine. https://www.mstrust.org.uk/a-z/funct...timulation-fes . My muscles are reacting and firing after seven years of nothing. It's crazy! I cannot move or let alone feel my legs. But, they feel relaxed and calm in a way I have never felt before. Thanks guys!
I am honored to call myself the new "Ambassador" of Project Walk Los Angeles. Anyone with a spinal cord injury. From severe to mild, high injury to low injury, complicated or not. Come check this place out! I assure you, if you have been let down in the past by recovery facilities either not having the proper equipment or knowledge to assist someone with a spinal cord injury. You will not be disappointed here. I have been let down so much. I took the fight home. But here, I'm straight...
? Keith
Project Walk of Los Angeles Amb.
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"Retractable" seat belt
Per a thread in the equipment forum (posted here rather than there since I now work for Bodypoint), wanted to suggest our pelvic stabilizer, called the Evoflex, for consideration. It does not retract, so does not have the hardware comfort issue, but stays upright when you unbuckle it, and has 3 buckle options, including a low-force button ("rehab") latch, for weight shifts and transfers.
I agree with SCI-Nurse that you don't want a belt to reduce the likelihood of doing pressure shifts, so definitely an argument for the right belt(s), if any, mounted in the right place.
I agree with SCI-Nurse that you don't want a belt to reduce the likelihood of doing pressure shifts, so definitely an argument for the right belt(s), if any, mounted in the right place.
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Increasing spasticity and frequent autonomic dysreflexia
For the first 3 1/2 years of my accident I was only taking 20 mg of baclofen, why? Because I believe it greatly affects your recovery. Now here IM f failed four years post this month, despite great effort I haven't recovered anything even the ability to pronate my right arm and gain more shoulder joint stabilization, I was kept in acute-care far too long to save my head doctors ass and reputation but at the end of the day plain and simple I failed. I was able to do was get placed in seating position and shift my ass left and right ( not even fully off the mat) and it's only possible with my legs straight out in front of menot bent that was before everything went to shit.
My spasms has reached new heights, a place where I am frankly terrified yet impressed my muscles contract harder than I would've ever been able to contract one muscle group when I was 190 pounds solid muscle. In the thread I made about them I describe how there was three different types http://sci.rutgers.edu/forum/showthr...ghlight=Spasms The shakes when it looks like I'm having a seizure stopped occurring about three months ago ( however they still continue in my arms especially my hands), now I only deal with what I call the 9.0s, and their consistency and relentlessness is baffling. I now have to be fully strapped to my chair if I'm not both my legs will contract constantly and literally remain airborne obviously not and option if I want to do anything including sit with decent posture. They still spasm But two tight tensor bandages hold them down usually have to be retightened periodically. I have to remain tilted back especially if I'm going to be hitting bumps, ramps are now extremely dangerous because I can be thrown forward any second out of the chair or on to my controls. My leg braces at night are no longer an option they have to be put on with sheep skin if I didn't have those not only would I never sleep I would not be on my bed and my spine would be destroyed. You should see a full-grown woman battle with my spasm despite my muscles after feeding and bones weakening they can often overpower them but once the braces are tied down they drop by 70% it's mind-boggling because usually any kind of touch sets them off, but it seems like they know they can't beat these 10,000 k pieces of fucking technology.
Some days, literally it's been quite oftenthey spasm in rhythmically almost every 30 seconds maximum a minute they contract extremely hard! But my torso remains in a flexed state in between contractions at times it feels like I am being crushed by my own body. When I wrote that thread freaking out, I had no possible way to rationalize that they could get worse but somehow they did. And what they have been doing recently has been causing me some additional problems:
1. Muscles that are constantly contractEd for long period of time can damage the muscles that's why EMS machines usually don't activate for more than 30 seconds intervals. Plus sometimes the strength and violent movements of the actual spasms and apparently caused tears to my already compromised muscles.
2. Increased autonomic dysreflexia! Yes it's no longer only caused by urinating or a block catheter, or bow care; sitting wrong toenail problems etc. We run through the entire checklist, but my physiotherapist may have discovered something , She thinks my insides are literally being affected by the pressure caused by the frequent contractions and constant flexing! I obviously was very sceptic is nothing like that is been heard of but she was able to induce extreme autonomic dysreflexia by simply pressing on my various different spots in my abdomen. This was after a very intensive stretch, where my spasms were reduced. There really is no other explanation. And it's fairly common for high complete injuries that lose a lot of Weight or gain it un proportionally to have their organs shift around for sitting so long so who knows.
3. My stretching is no longer relaxing, I'm going to have to start going more often but for an hour we have to do intensive stretches, the stretches especially involving my hip flexors cause extreme dysreflexia ( almost as bad as the worst I ever had caused by an objection to a erection reacting poorly to Cialis) of course I tough out it needs to be done, I can't imagine how good it is for my muscles and preventing various problems and it gives me at least an hour of reduce spasm used to be about eight hours but I don't live in that luxury land anymore.
I finally went to my psychiatrist, and just like me and my physiotherapist were thinking he also stated that nobody with spasticity like this puts up with it usually before gets anywhere near this bad, they without hesitation jump on the highest dose of oral medication and if that doesn't work they are on the Pump bagging for it. Obviously the cyst on my spinal cord and my abnormally high pressured bladder, are factors a lot of people don't get spasticity this bad bad and are able to tolerate what they do you have and stay off the medsAnd from what I heard eventually as their legs atrophy they get less frequent I was the opposite. When I go to the spinal rehab I seem to be the only motherfucker that hits the little hinges between sidewalks and bottom of doors that causes my entire body to pull me left and then yank me right like I'm having some kind of weird fit. Also inpatient outpatient none of them have their leg strap down, and none of them have to keep a separator in between their legs ( yeah my testicle health became a concern after my doctor checkeddown there and had her hand " squeezed") showering is just next level dangerous, anytime the water touches my legs or especially the growing I shoot forward we have that thing so far tilted back and be strapped up both legs. My medical history has taught me that these will get worse, despite logic deeming that it couldn't be possible. So I hopped on 40 mg, then 60 and now 80my yes after 3 1/2 goddamn years of toughing this out, I'm no closer to getting enrolled into a clinical trial and I'm finally giving in. They just cause too many health problems and are likely going to tear my muscles or cause bone damage. But guess what at 80 mg ( with tiazidine morning and night ) we noticed about a 35% reduction, The first day obviously we were ecstatic BUT then the next day 10%, now even my caregiver agrees they seem just as bad she actually thinks worse "she says after the third day I had to double tie every day to keep them down where is sometimes one was enough before the increase in dose", and the constant unexplainable autonomic dysreflexia is right back where it was,happening right now in fact... you know it's funny to as I'm in the last few days on a course of antibiotics don't even know how many times now but it's not being increased by and affection that's for sure! truth be told when my fever hit 40and my blood pressure bottomed out and they thought I was going to septic, my spasms were quite gentle compared to when I was "not infected" or "healthy".
So I'm kind of in unknown waters.
A lot of people will disagree with me but the one thing I was good at the one thing I was given in pain tolerance you could shove a glowing red zippo in the my leg at the age of 15 and I wouldn't even flinch, completely straight face, of course I was prepared for it and I was trying! still scared people since it went about 4 inches+ in my leg pretty much showing bone; Still have the scar 10 years later, it's funny didn't do anything for it never got infected it went green and pussy butnever bothered me, eating well I guess those were the days! I am wondering But what I was getting at with people disagreeing with me is tolerating nerve pain and getting off Lyrica piece a cake, I have bad nerve pain sometimes ridiculously bad over the years it's gotten worse but I'll never take that shit because all it can do is cause pain I can't actually do any damage, well physical damage. Does it make me miserable some days, yes if I have nothing to keep my mind off it especially; But these spasms actually have real implications. There's no real way to measure nerve pain, I don't think those drugs do anything anyways but a lot of people say that nerve pain is 10 out of 10, and yes some days it does feel like you're on fire well-being on ice is your being cut by tiny little pieces of glass. But even at the worst of the worst I consider when I snap my finger in half and the doctor was pulling the fucking thing straight, or the moment the lighter sunk into my skin, or the second after a solid liver shot is on those split seconds I consider those 8/ maybe nine out of 10 pissing out a kidney stone or being stabbed in a vital organ/literally burning alive those are probably 10. What makes nerve pain is it's Constant it never stops, If it just came for a split second it be laughable to someone with decent pain tolerance...
The spasticity specialist is hesitant about Botox because of my level of spasms it probably won't work, and how reactive they are the touch makes injecting them dangerous, so he's pushing the pump. The pump exasperate Aging ( unnatural anywhere in the body released Cortizol), spinal atrophy, and you'll LIKLY never be able to get off the stuffand it would almost certainly decrease the chances of success with spinal stimulator's. I'm going to see a marijuana clinic this Friday, I'm trying to get high doses of magnesium naturally trying everything if I do go on the pump it'll just be a means to the end, as it will destroy my other chances to fight off the injury. Hopefully I can figure something out, from everything I've read about from you guys it seems that marijuana is hit and miss like everything right. But it's worth a try anyways I just wanted to put this out there because frankly this level spasticity seems highly abnormal see if anyone else knows what I'm talking about. If I somehow figure out what is causing this I'll let you know to anyone that cares just for their own education I mean. My hypothesis is it's like a snowball effect, my chronic infections indwelling catheter that cause colonize bladder extremely high pressured bladder this builds and builds, as the spasms continue to get worse the more damage they do the worse they get about four years of them having their way if it ends up they are hurting the my insides it would only make them worse, the dysreflexia makes them worse etc. it's just a wrap a chain of events also there is the possibility small possibility the synrix is growing Will find out
My spasms has reached new heights, a place where I am frankly terrified yet impressed my muscles contract harder than I would've ever been able to contract one muscle group when I was 190 pounds solid muscle. In the thread I made about them I describe how there was three different types http://sci.rutgers.edu/forum/showthr...ghlight=Spasms The shakes when it looks like I'm having a seizure stopped occurring about three months ago ( however they still continue in my arms especially my hands), now I only deal with what I call the 9.0s, and their consistency and relentlessness is baffling. I now have to be fully strapped to my chair if I'm not both my legs will contract constantly and literally remain airborne obviously not and option if I want to do anything including sit with decent posture. They still spasm But two tight tensor bandages hold them down usually have to be retightened periodically. I have to remain tilted back especially if I'm going to be hitting bumps, ramps are now extremely dangerous because I can be thrown forward any second out of the chair or on to my controls. My leg braces at night are no longer an option they have to be put on with sheep skin if I didn't have those not only would I never sleep I would not be on my bed and my spine would be destroyed. You should see a full-grown woman battle with my spasm despite my muscles after feeding and bones weakening they can often overpower them but once the braces are tied down they drop by 70% it's mind-boggling because usually any kind of touch sets them off, but it seems like they know they can't beat these 10,000 k pieces of fucking technology.
Some days, literally it's been quite oftenthey spasm in rhythmically almost every 30 seconds maximum a minute they contract extremely hard! But my torso remains in a flexed state in between contractions at times it feels like I am being crushed by my own body. When I wrote that thread freaking out, I had no possible way to rationalize that they could get worse but somehow they did. And what they have been doing recently has been causing me some additional problems:
1. Muscles that are constantly contractEd for long period of time can damage the muscles that's why EMS machines usually don't activate for more than 30 seconds intervals. Plus sometimes the strength and violent movements of the actual spasms and apparently caused tears to my already compromised muscles.
2. Increased autonomic dysreflexia! Yes it's no longer only caused by urinating or a block catheter, or bow care; sitting wrong toenail problems etc. We run through the entire checklist, but my physiotherapist may have discovered something , She thinks my insides are literally being affected by the pressure caused by the frequent contractions and constant flexing! I obviously was very sceptic is nothing like that is been heard of but she was able to induce extreme autonomic dysreflexia by simply pressing on my various different spots in my abdomen. This was after a very intensive stretch, where my spasms were reduced. There really is no other explanation. And it's fairly common for high complete injuries that lose a lot of Weight or gain it un proportionally to have their organs shift around for sitting so long so who knows.
3. My stretching is no longer relaxing, I'm going to have to start going more often but for an hour we have to do intensive stretches, the stretches especially involving my hip flexors cause extreme dysreflexia ( almost as bad as the worst I ever had caused by an objection to a erection reacting poorly to Cialis) of course I tough out it needs to be done, I can't imagine how good it is for my muscles and preventing various problems and it gives me at least an hour of reduce spasm used to be about eight hours but I don't live in that luxury land anymore.
I finally went to my psychiatrist, and just like me and my physiotherapist were thinking he also stated that nobody with spasticity like this puts up with it usually before gets anywhere near this bad, they without hesitation jump on the highest dose of oral medication and if that doesn't work they are on the Pump bagging for it. Obviously the cyst on my spinal cord and my abnormally high pressured bladder, are factors a lot of people don't get spasticity this bad bad and are able to tolerate what they do you have and stay off the medsAnd from what I heard eventually as their legs atrophy they get less frequent I was the opposite. When I go to the spinal rehab I seem to be the only motherfucker that hits the little hinges between sidewalks and bottom of doors that causes my entire body to pull me left and then yank me right like I'm having some kind of weird fit. Also inpatient outpatient none of them have their leg strap down, and none of them have to keep a separator in between their legs ( yeah my testicle health became a concern after my doctor checkeddown there and had her hand " squeezed") showering is just next level dangerous, anytime the water touches my legs or especially the growing I shoot forward we have that thing so far tilted back and be strapped up both legs. My medical history has taught me that these will get worse, despite logic deeming that it couldn't be possible. So I hopped on 40 mg, then 60 and now 80my yes after 3 1/2 goddamn years of toughing this out, I'm no closer to getting enrolled into a clinical trial and I'm finally giving in. They just cause too many health problems and are likely going to tear my muscles or cause bone damage. But guess what at 80 mg ( with tiazidine morning and night ) we noticed about a 35% reduction, The first day obviously we were ecstatic BUT then the next day 10%, now even my caregiver agrees they seem just as bad she actually thinks worse "she says after the third day I had to double tie every day to keep them down where is sometimes one was enough before the increase in dose", and the constant unexplainable autonomic dysreflexia is right back where it was,happening right now in fact... you know it's funny to as I'm in the last few days on a course of antibiotics don't even know how many times now but it's not being increased by and affection that's for sure! truth be told when my fever hit 40and my blood pressure bottomed out and they thought I was going to septic, my spasms were quite gentle compared to when I was "not infected" or "healthy".
So I'm kind of in unknown waters.
A lot of people will disagree with me but the one thing I was good at the one thing I was given in pain tolerance you could shove a glowing red zippo in the my leg at the age of 15 and I wouldn't even flinch, completely straight face, of course I was prepared for it and I was trying! still scared people since it went about 4 inches+ in my leg pretty much showing bone; Still have the scar 10 years later, it's funny didn't do anything for it never got infected it went green and pussy butnever bothered me, eating well I guess those were the days! I am wondering But what I was getting at with people disagreeing with me is tolerating nerve pain and getting off Lyrica piece a cake, I have bad nerve pain sometimes ridiculously bad over the years it's gotten worse but I'll never take that shit because all it can do is cause pain I can't actually do any damage, well physical damage. Does it make me miserable some days, yes if I have nothing to keep my mind off it especially; But these spasms actually have real implications. There's no real way to measure nerve pain, I don't think those drugs do anything anyways but a lot of people say that nerve pain is 10 out of 10, and yes some days it does feel like you're on fire well-being on ice is your being cut by tiny little pieces of glass. But even at the worst of the worst I consider when I snap my finger in half and the doctor was pulling the fucking thing straight, or the moment the lighter sunk into my skin, or the second after a solid liver shot is on those split seconds I consider those 8/ maybe nine out of 10 pissing out a kidney stone or being stabbed in a vital organ/literally burning alive those are probably 10. What makes nerve pain is it's Constant it never stops, If it just came for a split second it be laughable to someone with decent pain tolerance...
The spasticity specialist is hesitant about Botox because of my level of spasms it probably won't work, and how reactive they are the touch makes injecting them dangerous, so he's pushing the pump. The pump exasperate Aging ( unnatural anywhere in the body released Cortizol), spinal atrophy, and you'll LIKLY never be able to get off the stuffand it would almost certainly decrease the chances of success with spinal stimulator's. I'm going to see a marijuana clinic this Friday, I'm trying to get high doses of magnesium naturally trying everything if I do go on the pump it'll just be a means to the end, as it will destroy my other chances to fight off the injury. Hopefully I can figure something out, from everything I've read about from you guys it seems that marijuana is hit and miss like everything right. But it's worth a try anyways I just wanted to put this out there because frankly this level spasticity seems highly abnormal see if anyone else knows what I'm talking about. If I somehow figure out what is causing this I'll let you know to anyone that cares just for their own education I mean. My hypothesis is it's like a snowball effect, my chronic infections indwelling catheter that cause colonize bladder extremely high pressured bladder this builds and builds, as the spasms continue to get worse the more damage they do the worse they get about four years of them having their way if it ends up they are hurting the my insides it would only make them worse, the dysreflexia makes them worse etc. it's just a wrap a chain of events also there is the possibility small possibility the synrix is growing Will find out
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Chain drop problems with Quickie Mach II
I keep dropping the chain on my Mach II anytime I put forth more than a moderate amount of power; basically, anytime I go up the slightest hill, the chain pops off. It seems to happen on the part of the stroke when I am pushing over the top rather than on the pull part of the stroke. Does anyone have any insight into a fix (hopefully a cheap and easy one :)).
I have already checked the chain and it is still good, and I have the pulleys positioned to keep the chain as tight as possible.
Thanks in advance.
- Jesse
I have already checked the chain and it is still good, and I have the pulleys positioned to keep the chain as tight as possible.
Thanks in advance.
- Jesse
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Anyone have a Tracfab chair?
I have been thinking of getting a chair I can actually go in the yard with and not worry about getting stuck or falling over. Anyone have one and what has your experience been?
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Where to buy Braun folding ramp hinge?
Hi CC members!
My Braun folding ramp has a broken hinge (in the middle fold) that needs to be replaced, which my bf can do so online looking for the part. If anyone knows where to buy online, plz let me know. Many thanks
Tiff
My Braun folding ramp has a broken hinge (in the middle fold) that needs to be replaced, which my bf can do so online looking for the part. If anyone knows where to buy online, plz let me know. Many thanks
Tiff
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CBS News story hypes unproven stem cell treatment for spinal cord injury - news
Carefull out there...
check out the mentioned Guidelines Link - good to bookmark, very informative-moe
CBS News story hypes unproven stem cell treatment for spinal cord injury
This story portrays a quadriplegic man who believes a stem cell transplant helped him to recover partial function after a spinal cord injury. The story effectively conveys the devastation of spinal cord injuries and correctly identifies stem cell therapy as an experimental and unproven treatment.However, its thrust that the therapy ?shows promise? is misleading; its efficacy has yet to be supported by rigorous trials. The story doesn?t give data on costs, harms, and availability that might have injected balance into the piece. We?ve reviewed other stories that unfairly wow readers up front only to save caveats for the end, including a recent BuzzFeed piece on an experimental device that restored some function to a paralysis patient. But in this case, the story also perpetuates a trend of media coverage that hypes unproven stem cell therapies for various conditions, unfairly raising patient expectations based on isolated and preliminary findings.
Stem cells are an active area of research for spinal cord repair, but their potential and associated risks are not clear. According to the Canadian Stem Cell Foundation, stem cells are being studied as a source of new cells and products that could prevent further damage, restore nerve function, generate new nerve cells and guide the regrowth of severed nerve fibers. It says current trials are very small, mostly testing the safety of putting adult stem cells into patients. The question of whether stem cells can safely improve function is years away from being answered.
Meanwhile, there?s growing concern about media reports that exaggerate the potential of stem cell therapies that are in early phases of research. This month the International Society for Stem Cell Research issued guidelines to encourage accurate and balanced communication of stem cell science, including setbacks as well as progress.
SOURCE LINK
check out the mentioned Guidelines Link - good to bookmark, very informative-moe
CBS News story hypes unproven stem cell treatment for spinal cord injury
This story portrays a quadriplegic man who believes a stem cell transplant helped him to recover partial function after a spinal cord injury. The story effectively conveys the devastation of spinal cord injuries and correctly identifies stem cell therapy as an experimental and unproven treatment.However, its thrust that the therapy ?shows promise? is misleading; its efficacy has yet to be supported by rigorous trials. The story doesn?t give data on costs, harms, and availability that might have injected balance into the piece. We?ve reviewed other stories that unfairly wow readers up front only to save caveats for the end, including a recent BuzzFeed piece on an experimental device that restored some function to a paralysis patient. But in this case, the story also perpetuates a trend of media coverage that hypes unproven stem cell therapies for various conditions, unfairly raising patient expectations based on isolated and preliminary findings.
Why This Matters
About 282,000 people in the U.S. are estimated to be living with spinal cord injuries, mainly from vehicle collisions and falls, according to the National Spinal Cord Injury Statistical Center. Spinal cord injuries can be incomplete, meaning that patients retain some motor or sensory function below the injury, or complete, in which there is a total lack of sensory and motor function below the level of injury. In either case, they almost always result in lifelong disability. Effective emergency care for people with spinal cord injuries and aggressive treatment and rehabilitation can minimize damage to the nervous system and restore some function. However, there is no treatment to repair spinal cord injuries.Stem cells are an active area of research for spinal cord repair, but their potential and associated risks are not clear. According to the Canadian Stem Cell Foundation, stem cells are being studied as a source of new cells and products that could prevent further damage, restore nerve function, generate new nerve cells and guide the regrowth of severed nerve fibers. It says current trials are very small, mostly testing the safety of putting adult stem cells into patients. The question of whether stem cells can safely improve function is years away from being answered.
Meanwhile, there?s growing concern about media reports that exaggerate the potential of stem cell therapies that are in early phases of research. This month the International Society for Stem Cell Research issued guidelines to encourage accurate and balanced communication of stem cell science, including setbacks as well as progress.
SOURCE LINK
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Easy Reach, Bruno Valet, Freedom Lift?
Considering one of these. Any recommendations? Comments? Thanks!!
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Why even bother with a woundvac
They put me on a woundvac in March, now the plastic surgeon says back tissue will not hold up to pressure sitting on it! So, why even use it?
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Anyone uwe windows speech recognition?
Since I Have been on my back for quite a while this program has been very handy. Just saying, in case anyone did not really know about it.
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