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I am sure you will all join me in thanking Simon for instigating this site and for all the hard work he puts in during the year to keep it going.     Many times during the past year I have been so grateful that I could turn on the laptop and just see what was going on in other peoples lives  and compare our problems related to sci or just  generally surf the site and add my comments or not. So on behalf of us all a big THANK YOU, a happy Christmas and I look forward to Apparelyzed in 2012.     

When I joined this website about a month ago, I had so many questions and I felt so lost, distraught, and confused. Although I do not post much I keep up with everyone elses posts and I learn new things everyday. Even if they don't apply to me now, im sure they will be helpful in the future. Fortunately I have had very little complications with my injury which I know is a blessing. I felt like I lost a big part of me and who I was when I got my SCI, but for the first time in my year of being injured I can say that I feel like the beautiful, confident woman I was before I was injured and I owe it all to this website, the wonderful people I have gotten to know, and even the members I don't know. I feel that no matter what happens Im going to be ok, and that is a great feeling! I realize I am still going to have my ups and downs and its not an easy life we are living but for me to feel this comfortable so early on is amazing. I put my life on hold because I felt so alienated from the world, but I finally feel like Im ready to get back out there and join society again lol. You may or may not realize it but you all made a huge impact in someones life. So thank you for sharing and inspiring me! I just thought you all should know :-)

Will goes a long way but won't undamage a damaged spinal cord.  Will power comes in when there is an incomplete injury, function returns, exercise, returning movement or maintaining movement...etc.  Will becomes or defeats walkers.  If there is no function then the only time will power will help you,  is to foment an emotional change so you accept yourself as you are.

 

If you have returning function use your will power to help you work toward your goals, if you have no returning function or you're complete then use your will power to become the best you that you can be.  

Your injury is yours. Your grieving process is yours. There is really no comparing your situation with anyone elses. You need to get through it the way you get through it. One wonderful thing about this board is that no one tries to trump anyone by saying they have it worse. There is just lots of support. The board is here for people to feel safe getting the whining and complaining off their chest.

I deal with my sci like I do with ex girlfriends.  There are things that always remind me of them, but I can't let those memories dictate what I like to enjoy currently.  I just have to keep pushing forward and hope for the best.

Hi Lav ,

This baffles me, not your wanting people to know you are one of the walking wounded, but that someone would be angry/upset at your walking...wtf is this "person" or these "persons" thinking, this type of discrimination/ignorance is simply sad...and ugly!

Why not just have separate websites for each sci level, for completes/incompletes, oh wait; those that use anti-tip bars, pretty pink spokes, frogs legs, pneumatic tires...how about hair/skin/eye colour, length of fingernails, size of their  

I'm not going to vote either, unless you add a check box for

I don't give a flying f*@k what your SCI level is, or how severe or not, you're still a brother/sister; family!


A friend, rehab buddy Duncan, c5 like me, walked out of hospital...what a joyous moment!  My carer has a plate at c4-6, a disc issue, she shouldn't be walking but is, "all" that remains of her SCI is partial numbness in her arms n fingers...lots of nero pain!

Those people that lambasted you for being honest, need to get a life; pull their heads/hearts out their assholes!

PS. I tried to be PC, really I did  

tomsov, you need to better understand the situation...and not just accept what the shallow politicians say. It's not the people's fault. Many good people are out of work. The western financial system no longer works.

The fault is with the bankers and money people of Wall St. Blame them. They created the money borrowing frenzy and they juggled the money to disguise that it didn't really exist. The Occupy people are the gentle reaction. If something radical is not done to reorganise the way we use money then it's going to lead to big-time violence. Last time there was a great depression it led to Hitler and Nazism.

The old way no longer works. It's not going to be fixed tomrrow and more people will find it harder to find jobs, maybe including you.

"You drive my point home exactly if you meant to or not.
 
The bottom line is not about guns. People are the problem. The bad guys will always find ways to kill other people. Guns, like a wheelchair, is just a tool that makes it easier and less ."

Lol context and opinion is everything.  I know the adage you allude to "guns don't kill people, people kill people". Well the truth is that People with access to guns kill people an awful lot more than people who have access to knives, clubs and as you suggest wheelchairs.

Man has killed other men with just about every tool imaginable but my point was that a handgun is a tool that's only purpose is to kill another human being. It's not going to stop any  large animal or drive in a nail or any other useful thing. It's design, purpose and function is to kill.

My point is that if guns are readily to hand people who are bad, mad or just plain old stupid have more chance to cause harm. If this latest crazies mom hadn't been a gun owner do you think he'd have gone to Sandy Gap Elementary with a screwdriver or a knife?

Now I actually don't think the right to bear arms is an entirely bad thing but within a regulated framework or in an approved militia ( as I believe was the original intent of your constitution). But your country needs to get a grip on itself and talk about this and reach an American solution that doesn't mean going back to the Wild West.

Your society licences and controls many things that CAN kill such as cars, motorcycles, alcohol, drugs yet it cannot find the strength to control the thing that exists only TO kill.

America has an EMOTIONAL attachment to the gun and like most doomed love affairs your friends looking in can see the likely ending while the lovers are blinded by their emotions.

Tom

hey, last night well it was through the day to about 8 or 9 but still i went out with the lads to bars etc and for a meal for a little christmas get together, i didnt mind to much about going for a meal as ive done that a few times but going in and out of bars and clubs was a little weird, might not seem much but it was a step, the main one was everyone standing so close and so high also i needed to toilet and it was at the back of this club so you had to pass the bar to get there but with it being a club the bar was full from the bar to the wall and i couldnt just squeeze in and out of everyone so i caved  and got my brother to help me get through but i had to do it alone on the way back - not so bad, pat on the back for me yay - i think, normally the though of going out would of put me off, getting ready etc getting there and just the whole thing but i thought f**k it, its christmas time and it was a good time i enjoyed myself and just thought i'd share hehe

I've noticed a few posts on "how dare some one help me"  or "I hate it when...."  

This is my take, since I don't think this has really been addressed in this way;   (if it has excuse the dual beating to death of this topic)

Not at all to be rude or misconstrued, (as many members are want to do) , but.......One thing to consider is, how confident do you appear putting your chair in your car, or moving through life, shopping, carrying things?    We all have less functional days.

I'm really new at this but really work to look competent and confident. That said....we all have bad days. We drop the body, drop a wheel...etc.  Cuss as the body hits us in the face.... I just can't understand a person forcing help on someone who didn't appear to be struggling in some way.

I truly hope you don't find it offensive, but it's a possibility because no one is 100% strong all the time, could it be that maybe, just maybe, you appear a bit tired, weak, uncoordinated.  I often head out walking only to find out...I collapse and can't finish.  Help would really be great then and sometimes I do get it.  

Another thought is the universe is forcing help your way in an attempt to encourage you to perhaps help others or wake you up to the needs of your fellow humans,  being that you are so capable.  

At any rate... people will or won't help based on their nature...please come up with a decent non rude reply when you are at home or not in danger of receiving a drive by helping hand!!  Watch out for Boy Scouts too!!  But seriously....we all have feelings.  Imagine how you would feel if you saw someone struggling, you tried to help, and your head got chewed off.  Be decent to your fellow man.  Treat them the way you'd like to be treated, a smile a laugh, a thanks but no thanks any kindness goes on for miles....or simply telling someone how they can help.  Would it kill anyone to let someone put a wheel in, or learn to fold down a chair back?   My friend felt bad for me and moved my chair to the back seat for me so my son could get in.  I can handle it with the cane myself, she put it in sideways, but it was important to her to help me and didn't hurt anything.  I can get it out or my husband can....life goes on

Yeah I can hear the argument from full time users now, certain way, etc,,,,, when i do it myself at a store, I have to do it a certain way....BUT it won't kill anything to let a person put a wheel in the back.  or fold the back, plus they learn something new.

The moral....let go a bit and get some happiness back, it's no fun being angry and looking for a fight all the time

I think all of us need to stop saying  

 

I know how lucky I am

Believe me I am glad to be walking

I know how blessed I am

 

etc.....

 

I think we all need to stop apologizing for feeling the way we feel. Angry, frustrated, disappointed, cut down, let down, left out, left behind.  I am just as guilty for these "well I hate to complain because I'm so darn lucky...but"  moments too.  I am trying to stop and to say what I mean.  We have just as much right to our feelings of confusion, pain and loss as any complete or more complete incomplete.  We have all been affected by SCI.  So what, we can ambulate...a little, a lot, some, sometimes?  I think we need to stop worrying about offending the people who can't walk.  We also need to not worry about our friends who can walk and what they will think if we show up in a chair because we just can't walk that day.  I do it, I give them a heads up though if we're going out in a group.  There are some days....and I know all of you have them, (if not then I must be the odd girl out) when we would trade with someone who knew they would not walk again just for the knowing what a day will bring.   It gets really irritating to be made to feel that we have less of a right to complain, let loose, let down and let it out than a person who can't walk.  It's just the way the cards fell for all of us. I'm sorry about the hand that some people got, especially the people who let depression and bitterness so define them that they can't accept the rest of us for who we are or aren't.

 

Moan all you want to Alex J.  It sucks to not feel your feet one day then the next the carpet feels like broken glass!  Who in their right mind would want to trade with us for that?  Who in their right mind would want to trade with us for clothes that feel like sand paper rubbing your body 24/7 except when you drug yourself to sleep.  Yes, I hate summer because the burning pain gets to suicidal levels...no, I won't commit suicide.  I have not nearly annoyed my son and husband long enough!  They aren't getting rid of me for decades (hopefully!)  

 

So complain away...feel the way you feel...make no apologies to people who are ugly, ignorant, or not worth knowing. 

There is a difference between healthy and unhealthy people and I have ran into a group of unhealthy people. I did not ask for the type of feedback when it comes to downgrading. I am thick skinned but I have enough respect for myself not to put up with these kinds of people. I for sure will put myself around some healthier good hearted people for you guys surly do not fit that category. My position will not change either. :-)

 

Jen, I hope you can read this objectively because I am reading this thread (in it's entirety at least) for the first time and I have nothing to do with anything that's gone on here and have no reason to be anything other than totally honest. 

 

Nobody was rude to you.  NOBODY.  You are brand new to your injury and you were being given some perspective from other people who have lived with similar (and in some cases much worse) injuries for a very long time.  I think you need to look INWARD as to why you reacted so strongly to what was absolutely nothing but friendly and realistic discussion of what we're ALL dealing with in our lives.  If what went on in this thread alone is enough to give you the apparent conniption fit that it did, then I have bad news for you regarding your injury.  Because WHATEVER the final outcome is with you and your injury, it's going to take a strong, thick skinned person to make the best of it.

Jen,

 

Your post has been bothering me since I read it this morning.

 

My concerns are:

• You are so early in your injury.  Do you think you are through the grieving process?  I know you want to be positive, but you need to grieve in order to honestly begin the road to recovery.  The people in these forums have experienced unimaginable physical and emotional pain and they are here to support and guide you.  Don't blow them off.
• Bickering in the threads always upsets me, although sometimes I derive entertainment from it.   I hope your departure is not due to people just being honest.  Yes, there are some people who come on a little strong and I imagine you're not the only person who has been offended.  But most people have insightful, humourous and compassionate things to say.  They will also cheer you on as you progress.

I wish you the best for your recovery and hope you will feel comfortable to come back to us should the need arise.

Greetings and Happy Easter!

 

Yesterday, for the first time, my husband took a "stroll" with his walker outside of therapy.  As we inched our way down the street, neighbors seemed to some out of the woodwork to cheer him on.  Later that evening, he turned to me with tears in his eyes and said: "I walked today.  I have been dreaming of this for so long."  I haven't seen him so happy since his injury. 

I can tie my shoes now after my injury lol. I feel 5 again. I am thankful though, for it does take fine motor skills.

I don't look at the future in the same way as you or I'd probably feel discouraged as well. There is so much I want to accomplish and experience in life I don't think about there being too much time left but rather not enough! If all you do is sit around and think about how much your life sucks and always will suck well then you're right, your life probably will always suck. You have to find something you enjoy doing, there is still SO much you can do even though you're paralyzed especially as someone with such a low injury. You need something to focus your energy into something that will make all the shitty things in life tolerable. Sure, I wish I wasn't paralyzed and could just go to the bathroom like a "normal" person but I realize that I can't, that dwelling on the fact that I can't won't make me able to and would rather be doing something I enjoy than laying in bed thinking about all the things I can't do. I know that "life in a wheelchair" 10, 20, 50 years down the road may involve even more added hassle than what it does now, which is why I'm doing my best to enjoy and take advantage of all the abilities and freedom I do have now. 

 

I hope one day you're able to look past all the bad aspects of SCI and start living a life that is enjoyable and fulfilling, you deserve it!

It happens. Believe it or not, no matter how strong some gimps try to be, we all have shitty days. Sometimes, shitty weeks, months even. Hell, being gimped sucks. Feel free to vent, scream, yell, cry. We all have those moments. The trick is to be able to gather up the pieces and move on. Hope things get better for you soon. But, you got to play the cards your dealt, just some have a better poker face than others.

Your penis turned into a joystick

Paralysis breakthrough: spinal cord damage repaired

• Updated 13:19 25 October 2012 by Helen Thomson
• Magazine issue 2888.

Paralysis may no longer mean life in a wheelchair. A man who is paralysed from the trunk down has recovered the ability to stand and move his legs unaided thanks to training with an electrical implant.
Andrew Meas of Louisville, Kentucky, says it has changed his life (see "I suddenly noticed I can move my pinkie", below). The stimulus provided by the implant is thought to have either strengthened persistent "silent" connections across his damaged spinal cord or even created new ones, allowing him to move even when the implant is switched off.
The results are potentially revolutionary, as they indicate that the spinal cord is able to recover its function years after becoming damaged.
Previous studies in animals with lower limb paralysis have shown that continuous electrical stimulation of the spinal cord below the area of damage allows an animal to stand and perform locomotion-like movements. That's because the stimulation allows information about proprioception – the perception of body position and muscle effort – to be received from the lower limbs by the spinal cord. The spinal cord, in turn, allows lower limb muscles to react and support the body without any information being received from the brain (Journal of Neuroscience, doi.org/czq67d).
Last year, Susan Harkema and Claudia Angeli at the Frazier Rehab Institute and University of Louisville in Kentucky and colleagues tested what had been learned on animals in a man who was paralysed after being hit by a car in 2006. He was diagnosed with a "motor complete" spinal lesion in his neck, which means that no motor activity can be recorded below the lesion.
First, the man had extensive training in which his legs were moved by physiotherapists while his weight was supported by a harness. During this time no improvement was observed.
He then had a 16-electrode array implanted into the lower region of his spinal cord, which stimulated spinal nerves with continuous electrical activity. When the implant was switched on and he was helped into the correct position, he succeeded in holding his own body weight and standing on his first attempt.
Then something unexpected happened. Seven months into training on how to stand using the implant, he tried to move his toe while the stimulation was on. "He just started trying to move his toe," says Angeli. "He was like, 'look it's wiggling!' Further testing showed that he was able to move his leg and ankle, too – indicating that voluntary signals from the brain were crossing the lesion.
Over time, the volunteer also gained increased bladder control and sexual function, and had better temperature regulation (The Lancet, doi.org/b3spxp). All of these abilities involve input from the brain, confirming information could now be sent across the damaged area of the spine, as long as the stimulation was on.
Reggie Edgerton of the University of California, Los Angeles, who also worked on the study, says that their initial reason for doing the experiment was to utilise proprioception to tell the spinal cord what to do to allow someone to stand. "We had no idea that the stimulation would be working upwards as well, doing something to the connections between the spinal cord and the brain," he says.
One possible explanation is that new connections grew across the spinal lesion. But since this response to stimulation has never been shown in animals, a more likely explanation is that the stimulation pushed the activity of damaged connections over a threshold needed for them to send information from the brain to the limbs. "There may be 'silent' connections that can't be seen by current imaging techniques, and are too damaged to work by themselves, which can be boosted into crossing a threshold of activation by the stimulation," says Edgerton.
Another suggestion is that the sensory fibres that allowed this particular patient to retain some feeling in his legs may have been used in motor control. To rule this out, Angeli and her colleagues recruited Meas and another volunteer who had complete motor and sensory paralysis. From the first session with the electrical implant, both were able to move their lower limbs when the stimulation was on.
"We think that the first volunteer may have been able to do it straight away too, but just never tried," says Angeli, who presented the results at the Society for Neuroscience Conference in New Orleans last week.
Over time, all three of the volunteers were able to carry out a variety of movements ranging from whole leg flexion to toe extension. Their coordination also improved and they could generate more force from each movement. And after four months of training, the amount of stimulation needed to create the same amount of movement fell.
However, there was a final surprise in store. At the conference, Angeli showed how, after three months, Meas was able to stand and move his lower limbs without the aid of stimulation. "One day he was training with the stimulation and we shut it off and he was still able to move," she says. "We didn't expect to see it happen so quickly."
We now need to learn how to push these silent connections above their threshold, says Edgerton. He thinks it may simply be a case of improving the implants. "We're using an implant that was build three decades ago and designed to suppress pain.
We thought it would be good enough to show proof of principle, but our volunteers are going crazy because they know what they need to do but the stimulation device isn't good enough yet to allow them to do it."
For now, none of the volunteers can walk without support. "We have a feeling that it's a question of the technology restricting us, that being able to control stimulation to the left and right legs separately might help," says Angeli.
Brian Noga, who works on spinal damage research at the University of Miami Health System in Florida, says the work clearly demonstrates that even people with the most severe spinal injuries may have some remaining connections.
"It really makes us open our mind to very new possibilities," says Edgerton. "All those individuals that are considered completely paralysed and know about this experiment, you know they are thinking 'am I one of those that can do this?' We just don't know."

"I suddenly noticed I could move my pinkie"

"I was cruising towards the highway when this old guy tried to cross the 4-lane road really fast. He hit me and I ejected over to the opposite lane. Luckily someone found me before the traffic got to me."
On 6 September 2007, Andrew Meas of Louisville, Kentucky, suffered a spinal injury to an area near his neck. This resulted in full paralysis of his trunk and lower limbs. "I took part in 80 sessions of supported standing and locomotor training and nothing happened."
Then Meas had a 16-lead electrode implanted into the lower segments of his spinal cord. This provides constant electrical stimulation to his lower limbs (see main story). "When it was turned on there was this jolt in my muscles," he says. He was able to stand and support his body weight.
"It was awesome," Meas says. Blood pressure, vision and bladder problems have all cleared up. But there were more surprises. Three months after stimulation training started, he was sitting on a mat trying to move different parts of his body when the implant was turned off. "I suddenly noticed that I could move my pinkie toe. I wiggled it."
Now the voluntary movement is starting to work its way around his body. "I can feel more muscle contraction in the bottom of my left foot and I'm working hard to strengthen that. I can kick my foot out and lift up my knees."
"When it happened for the first time we were all really excited about it," he says. "It was amazing – the most normal feeling I'd felt since my injury."

Hi everyone.
My name is Dana. My husband is a C5/6 quad.
We write a blog together called Love Like This Life all about our life, love, marriage and disability. (www.lovelikethislife.com)

I recently wrote something about our role as caregivers to people with SCI. I'd love it if you'd give it a read.  We are all in this together!

I've copied and pasted what I wrote below. The original link to that blog post is here: http://www.loveliket...ci-sisters.html

We are the wives of quads.
We may have taken the biggest risk of our lives, much to the dismay or hesitance of our family and friends.
Or, we may have survived the scariest thing of our lives – almost losing the men we love, but getting them back this way.

We prop legs up on pillows, turn them, stretch them, and straighten them out in our sleep.
We may or may not also put our hot or cold feet on those hot or cold legs in order to warm up, or cool off.
We pull our husbands around on pads in the bed.
We snuggle up in their armpits and rest our heads on their chest.
We love to hear their hearts beating.
We may or may not put our husbands arms around ourselves, if we have to.
So we can be held.
Because the very beginning of the day, and the very end of the day, that’s the only chance we have to be really close.
Without any titanium or rubber or aluminum between us.
Without getting run over by little wheels or big wheels or power wheels.

We have toe calluses. And amazingly quick feet, like the feet of running backs when those wheels take a turn towards our toes.

We slip forks and spoons into straps so our husbands can feed themselves.
We feed them sometimes to be sweet, or to just hurry things along.
We may or may not occasionally bend up restaurant silverware.
Or, maybe we travel with our own bent-up silverware in our purses.

Our purses.
Oh, our purses.
Yes, they hold our keys, our wallets, and our iPhones.
But our purses are like a stash of secret weapons.

Mothers – sorry to tell you this, but your diaper bags – they have nothing on our purses.
We have straps and straws and pills and catheters.
And bottles of water and sanitary wipes and allen wrenches.
We have our husbands’ wallets, phones, and sunglasses.

We don’t always have to carry those purses, though.
We almost always have a handlebar to hang those on.

Or a lap to sit them on.
Oh, that lap.
That is our favorite place.
We have a built in seat when we are waiting in line at a restaurant or at a concert or waiting for the train.
Did you know that that lap is dancing headquarters?
No, not in that kind of lap-dance kind of way.
Well, maybe sometimes.
That’s the best place for a lot of things.

We don’t get to walk hand in hand with our husbands on the beach.
Or sit on their shoulders in the pool.
Some of us don’t even get to ride beside them in the car.

Sometimes we cry.
We are held.
Sometimes we hold our husbands while they cry.

Sometimes we laugh so hard our stomachs hurt.
Because if we didn’t, we’d just cry again.

We are weightlifters.
We lift grown men into beds and wheelchairs, onto chairs and couches , into and out of pools, and into cars and SUVs.
We lift them over curbs, push them up hills, brace them down hills, and we can even lift them on to those really tall examination tables at doctor’s offices.
Why are those so tall?
Geez!

We are masters at dressing.
Anyone can dress themselves.
They may or may not do that well, that’s on them.
But, we can dress a body that is not our own, that has almost no control of itself, and make it look good.
We put jeans and khakis and shorts on man, all while he is laying down. We push and pull that body side to side and tuck pockets in and make sure leg bags are straight (and closed!) and button buttons and snap snaps, and buckle belts and tuck things in and pull them out just enough so that it’s comfortable and doesn’t cause a pressure sore.
We do this with impeccable strength and grace day in and day out and we nail it.
It is a science.
It is not easy.
Because if you screw up, your man can end up looking like a saggy bag of potatoes in a cart.
But if you tug and push and pull, and align those jeans and that shirt just the right way, he is comfortable, and he looks good and he has that confidence that he looks good.
And we like that confidence.
So, no matter how tired we are, or how much our backs already hurt, we do this dressing dance every morning. Then, we make the bed and make breakfast. And probably lunch. And eventually, dinner.

We can clean up any type of bodily produce imaginable.
Without breathing.
We do more laundry than anyone else you know.

We multitask.

We are landscapers, maids, and mechanics.
We are drivers and nurses and wheelchair repairmen.

In fact, we can drive, talk on the phone, eat fast food and feed french fries to our passengers, simultaneously. That “mom hand” that goes out when you’re braking hard, so that your passenger doesn’t end up on the dash board? We have that. We use it all the time. Even when we’re told we don’t need to.

We have strange encounters with strangers.
We’re either stared at or ignored, or looked like someone is saying with their eyes, “bless her heart.”
We roll our eyes. We smile with forgiveness.

Because we are taken care of too.
We are deeply loved.
We get massages with pointy elbows and soft, warm hands.
We get the BEST kissers in the world.
We are appreciated.
We are honored.

We are a part of a team.
We are bonded to our husbands in such a deep, intimate way.
And sometimes, despite the hard work and frustrations, we are thankful that we are forced to love this way, because we are also loved this way.
Just as fiercely.
Just as consistently.
Just as sacrificially.
We are.