SCI T12

[Fly_Pelican_Fly]

Hmmm the bungee walker looks interesting. Lots of weight bearing exercises that could be performed on that I suspect. I might mention it to Standing Start - thanks. I assume it is this? http://www.neurogymtech.com/products/bungee_walker.php

As for 4-AP/Fampridine-SR: Well, it is still awaiting approval in Europe and Canada for Multiple Sclerosis. However I believe some neurologists are willing to prescribe it off-label for SCI - if they think it could help. Obviously it will only have an effect if demyelination is the problem. In my case, if it made these "initiations" into something more like a movement it would be a victory. If it doesnt do anything then I would know pretty quickly apparently.

Biogen are going to be distributing it in Europe and Canada. Keep an eye out for it and give your neurologist a heads up in advance.

[swissmiss]

Yes that is it It is great because the seat can be adjusted to bear more weight or less depending on how much you can move on your own. There is a video on youtube as well: http://www.youtube.com/watch?v=XAwZS...eature=related

There is another guy at the gym that broke his neck a few years ago and has been using the bungee walker... Here is his personal testimony and it shows him using it:

http://www.neurogymrehab.com/testimo...-marc-high.php


When they use it with my fiance they have someone pushing the machine from the back (if needed) and also someone in the front helping him with placing his feet. I taped some of his physio sessions i will see if i can upload it online somehow.

Thanks for the information i will definately keep track of that!

[Fly_Pelican_Fly]

Wow, the bungee walker is genius!!!!! So many weight bearing exercises to be done on that. It actually made me smile. How sad is that? I want one!!!!

[agnes]

Hi you all!

The bungee walker is such a good idea.. The same company apparently also makes something called the ANKLE TRAINER. I NEED TO USE THIS. Does any one know where I could find one, either in the UK or in the USA? It is too expensive for me to buy. If you have any idea on how to locate one, please share.

Bones, your wife's work is really amazing. Is she still at Project Walk or are the later videos from somewhere else?

Pelican, do not give up on the physio. I remember doing the same exercises you are doing now at a similar point in time after injury. One thing: walk with the walker even if you have to put all your weight on you arms at the beginning. Or drag yourself if you have too!

[Fly_Pelican_Fly]

Pelican, do not give up on the physio. I remember doing the same exercises you are doing now at a similar point in time after injury. One thing: walk with the walker even if you have to put all your weight on you arms at the beginning. Or drag yourself if you have too!

Agnes, thanks for the advice. I will keep on with my walking also. I have to admit, the walking frame does make me lean forward and hence increases the pressure on my arms - ie shitty posture. Whereas when I use parallel bars my posture is sooo much better. I'll get there.

Do you have more information about how you developed over time? ie key milestones and all that jazz? Also where did you get your physiotherapy in the UK?

My medium term goals are:

1) To strengthen glutes (medius?) and core for better standing balance.
2) To strengthen quad flickers sufficiently to be able to hold my leg straight when sitting on the edge of a plinth.

Oh and of course, a full unassisted sit up - yeah baby. Im not far off now. No reason why I cant do that I have been told. I just have to strengthen those "quiet spots" in the range.

Grrrrrr bring it on.

Fly Pelican Fly

[agnes]

Yeahh Pelican!! Keep up the good attitude!

mmm.. about the posture, YES, it is a problem. A big one. But as a physio guy once told me, when something catastrophic as a SCI happens, first you have to try to get back as much as you can, in any way it may come. There will be years to polish it. And I really mean years, unfortunately. I was injured at the end of 1996, and have physio ever since, every two or three years. Time is measured in years for recovery, not in months, I am afraid.

The first 6 months after the injury, I used a wheelchair, mainly in the hospital. I could stand (putting all my weight on my arms) after 3 months after injury. It turns out that I lived back then in a country ABSOLUTELY not accessible, even my house had 3 flights of stairs to get to my bedroom. So, a chair was not an option. I did not go out much for a few months, then got really depressed and then decided to use crutches to live my life. Those were a very hard couple of years. I could barely walk, more accurately, I could barely drag myself. Walking 5 meters used to make me break into a sweat and pant. But I was in my very early twenties and there was no more choice. I had to finish Uni. I had to see my friends. It was not fun, and it was not pretty, in any way. I lived with my family, so it was possible not to do shopping or household chores. Only my quads and a bit of the hamstring and hip flexors worked. You can ambulate with that, if you are young and healthy, dont mind ending up on the floor once in while and are completely insane.

Of course, my body got sort of injured from the strain. But I did not stop having physio and eventually the same muscles got stronger. Then I decided to go to the US to do a Masters. I had to live alone, shop, clean, take care of my car and be a full time student. The level of activity significantly increased, and I almost did not make it for a while, but then again, I was so happy at the University that it did not matter. You could say I had made progress, since I could walk for much more than five meters at a time . I also switched to using a rollator, and things got better. Still, no glutes or much more going, other than the very strong quads. Fast forward to a job, a move to England, a Phd, etc.. In 2007 I had a physio 3 times a week, 2 hours per day. My glutes started to come back. And slowly they have been getting stronger. I go hiking now! and cycle and do too many things...

The idea is that I can not tell you exactly when I got better. Nor could my family or my partner. It happens over years, not months. One thing: physiotherapy helps. And "enforced use" works as opposed to learned non use. It is not for everybody, and as I said, I have damaged parts of my body doing it. But if I lived in a more accessible place when I got hurt, maybe the story would have been very different.

So dont worry about the posture now. Really. Even if you do not get any more return ever (which is probably unlikely), standing up and ambulating for short periods of time in any shape, way or form, will have tremendous benefits for your. To start, it helps prevent pressure sores, one of the things I am most afraid of in the Universe.

About the physio, I have not had any here in the UK, except in 2007. I lived and worked at a big University and contacted the Sports Medicine department, where a couple of therapists where doing research on physiotherapy that incorporated Pilates. It was a blessing to work with them. Otherwise, it has been in the US or in my home country. Hope the information helps. Really, just keep going!

[swissmiss]

Hi everyone, i have been reading through the thread from the start and have a couple questions.. First one is for bowels, my fiance no longer uses colace he only uses 2 sennakots at night. Should he be doing the opposite and get rid of the sennakot and start taking colace again? He does his routine every night before bed. There has been a few times where he was able to go on his own. And sometimes when he goes he gets really bad cramps (he says he feels stuff moving around and it is extremely painful) Could this be from the sennakot pills?

My other question is regarding the rods/pins.. i read some people had theirs removed. My fiance`s doctor told him if they dont bother him they should not be removed as they might cause further damage. He is fused from T10 to L1. His accident was March 2009. What is your opinion?

[swissmiss]

Sorry i also wanted to add that he uses microlax for every b routine

[Susqu]

Swissmiss, Withregaurd to the rods I would agree with the dr. (something I don't often do) As long as they arent severly bent, broken or causing infections I would leave them alone.

Yes it would increase his range of motion in the back, but you have to remember that ANY surgery has risks. Not to mention that the surgery (to remove the rods) is so close to the spine and spinal cord that I wouldn't want to take the chance if there wasn't a good reason to do so.

I am also T-12 complete and have thought many times about the removal surgery, but I have always concluded that the risks aren't worth it (to me) for the only reason of more flexibility in the back.

Hope this helps.

[Camille]

Swissmiss with regard to the rods. My doctor told me the same thing. That if they weren't bothering me we shouldn't remove them, so I haven't had surgery to remove them. I'm not sure about your first question.

[T12 INCOMPLETE]

has anyone really improved with walking completely since their injury?

[earlmis]

Walking after T12 Burst

Hi T,

Yes, there is hope!! my husband had a T12 burst fracture 8 months ago. He fell 30 ft. from a tree, flown to Shock Trauma at the Univ. of MD Med. Center. Within 5 hours of the fall, he was in surgery to replace the vertebrae with a mesh cage and bone from his ribs. He was in the hospital 5 days, and then spent 6 weeks at inpatient rehab. In the beginning he had nothing - no feeling and no movement, and was in a wheelchair when he went to rehab, but as soon as he got to rehab, he began to have a lot of return, and it was all very fast. Every day there would be a change of some kind. He took his first 14 steps (they were very shaky) with a walker on his 3rd day at rehab. He went from wheelchair to walker, to 3 prong canes, to cane, and now, 8 months post, he is walking with his AFO braces (you can't even see these if he is wearing pants or jeans), and only using a cane when he goes outside because the ground is uneven. His balance is still improving, and he has a slight limp that gets much worse when his legs get tired. When he came home from rehab, he came home with a walker and not even a rental wheelchair because he didn't need it. The return has slowed down drastically, but it is still happening. Now it is much more subtle and not as frequent, but changes are still happening. He has regained so much function in a very short time. The sensation is lagging behind a bit - he still has numbness on his feet & the back of his legs all the way up to his waist, but we are only half-way through the time when major recovery has the most likelihood of happening. If you have any questions, feel free to ask.

Missy

[MikeC]

Missy, glad to hear that your husband is having so much improvement. He is very lucky. Hope it continues!

Mike

[earlmis]

Hi Mike,

I hope you & your wife had a nice Christmas & Happy New Year, and I hope you are feeling well. Thank you!! We are so fortunate, and thank God every day. If I have learned anything in the last 8 months, it is that SCI is unpredictable. I have seen stories of so many with seemingly terrible injuries get up and walk, and then people with what would seem a milder injury have a lot more problems. It doesn't really make sense to me, but I can understand now why the doctors are so hesitant to tell you anything at all in the beginning. I don't think they know.

Earl still has plenty of issues with B&B, balance, numbness, etc, and now he is having problems with walking on the outside edge of his feet, but to have such an injury, and come out of it with these problems, we feel very fortunate.

Have a good weekend!! :-)