For all of you out there I hope you had a happy turkey day. I usually look forward to the food centered coma that takes up most of my day. Unfortunately I didn't get to enjoy the time after Thanksgiving. Many of you know that I have a neurogenic bowel, meaning that the nerves to some of my intestines do not function. Some of you will remember me explaining the painful process of being FOS. Now thanks to a hearty turkey dinner (and an over-fondness for cheeseits) I am once again suffering from FOS. What this means in practical terms is that my ribs and back are extremely sore. That's about it.
I bring this up because whenever I am sore and have to explain this to my parents (both of whom have medical backgrounds) I have to show where it is that I am sore. This inevitably leads to the game I've named "Does it hurt HERE?" This leads to them poking me in the back in places that are almost guaranteed to be sore already. And now you want to poke them...
This game does have real practical uses. It helps doctors and nurses ascertain where the problem is and what can be done. The frustrating part is having to be told "well, it could be a lot of things...". UNHELPFUL!!! Why couldn't you have said that before you starting hitting the spots that are already uncomfortable?!?
Now, to change the tone of this post, here is a dancing lizard:
I hope that improved your day a little. It sure improved mine.
This December, when I visit Baltimore, I am going to undergo my 4th back surgery.
For anyone who missed 1-3, here's a quick recap:
After my accident in December 2009 I had two rods inserted into my back. These served to stabilize my spine, allowing my shattered vertebrae time to heal. In April 2010, scans of my back showed that the broken pieces of my spinal column were pressing on my spinal cord. I am lucky that that my spinal cord didn't get severed but the continued pressure on my cord kept my from nerves from operating correctly, leaving me mostly paralyzed. I went in for two surgeries, spaced out over a week. They reconstructed the shattered vertebrae, putting the broken pieces of bone in a metal framework and placing them back in my back. The broken pieces of spine grow into the shape of the metal cage, providing me essentially with replacement vertebrae. They also shaved off some of the bone of the vertebrae, which was putting pressure in other sections of the cord.
The end result was that the nerves in my spinal cord had more room to regrow. It is a commonly held myth that nerves do not regrow. Cranial nerves (the ones in your skull) don't regrow but others still have the ability to regenerate. Given enough time nerves will grow and reconnect to the entire body; mine have, just very slowly.
Thanks to surgeries 2 and 3 I have increased function of both right and left legs, allowing me to walk with a simple ankle brace or AFO.
In surgery one, the spinal rods were put in place by drilling the screws directly into the bone. After two years the screws have started to loosen up. This process has not been painful at all... yet. There is the possibility that when the screws completely separate that they could bounce around, causing internal injuries. Before this happens, the rods and screws will be removed and replaced by more stable, permanent hardware. This surgery, while sounding ominous, is only minimally invasive and will only set me back for a few weeks. I will still be allowed to walk and I will be able to start back in physical therapy the very next week.
I'm not really happy about being cut into again but it beats the alternatives. I was seriously scared before the last set of surgeries, which ended up returning more function than I ever thought possible. And at the end of the day, who is really surprised that Peter has a few screws loose?
This site is devoted to the journey I've taken to start walking again. That being said I want to embrace the title I've been given: paraplegic.
Now once you've been injured you don't simply stop being one, your life is fundamentally altered. Now this doesn't mean your life gets worse, though some times it can seem that way. It means simply that how you viewed the world, how the world viewed you, and how you viewed your body is fundamentally different.
And you think you're cooler than this guy. REALLY?
http://www.damncoolpictures.com/2008/12/aaron-fotheringham-extreme-wheelchair.html
My goal is to walk without the assistance of canes, to have the use of my ankle back, and to walk so that I can go once more into a crowd without being noticed. Even after accomplishing all this though, I will still be a paraplegic. It's kind of like being a marine, in that there is no such thing as an ex-paraplegic. (though we DO get better parking than most marines)
This being said I want to put the word out about Apparelyzed.com, a spinal cord support group. I shied away from this kind of sight because it's still hard to look back and admit what I am. But I'm finally getting rid of that.
www.apparelyzed.com
This site is for those with new spinal cord injuries, family and friends of SCI, and people who just want to learn more about what this entails.
My therapy has taken a new route. While I will still be working on strengthening the various muscles I use for walking, I'm now going to be focusing more on the walking itself.
Anyone who has followed this blog will remember boot camp and my walking on the therastride. The harness system kept my weight in check and let me walk when my muscles were not strong enough to hold me up. Now that I can the harness is out the window. I'm walking using my AFO (Ankle Foot Orthosis) and my own determination.
This started because I requested at PT that I could use more practice walking without my canes. Since I have no timeframe for when I'll be able to walk without my ankle brace my next step will be to stop using my canes. So I'm walking on the treadmill, one that has bars on either side in case I need them.
My first ever video of walking without canes, I walked for about a minute and that was using my KAFO(Knee Ankle Foot Orthosis), which supported my leg to the hip. Now I'm walking for about 15 minutes, which leaves me completely exhausted. The muscles supporting me are still very weak, causing me to weave back and forth. I cannot walk a straight line to save my life. My favorite new saying:
I weeble and wobble... and I might fall down. But I get back up!
All this walking will be a step in the right direction. I keep improving but there's still a long road ahead. Walking metaphors irritate me when walking is the problem in the first place. Ah well, such is life.
Ice Cream Cake: I went into my normal physical therapy session last Thursday; I was asked by my therapist if I knew that this was my 100th Session. I had no idea. I have enough trouble remembering what day of the week it is. She smiled mischievously and the session continued. At the end of the session I attempted to pack and up and leave but she stopped me in my tracks. She disappeared for a second and reappeared with cake and balloons.
For those who are unaware, your average physical therapy patient never reaches 100 sessions, with the average recovery time for a basic injury being around 6 weeks. So to have seen someone make the type of gains that I have is quite rare.
Needless to say I dug into my ice cream cake and shared it with the rest of the clinic. I was glad that had decided to at least wait until after my PT session to bring out the ice cream. I think me hurling up the nice cake would slightly ruin the mood.
Beefcake: Those who follow The Turtle Walks will know that I have been making significant strides toward normal walking recently, shedding my leg brace and switching to the lower AFO (Ankle Foot Orthosis). These type of gains can only be made by an accompanying gain in muscle mass.
For all of 2010 and large sections of 2011, I wheeled myself around everywhere using my wheelchair. While this did lead to an increase in the size of my arms it caused the muscles in my legs to atrophy. Now finally I am starting to see some return of muscle mass to my legs. The right leg, the better working one, has been slowly gaining mass since late last year. Now that I've given up the leg brace the left has decided to join the team.
Metaphorical Cake: Inspired by a blog called Therapy, Thoughts, and Learning I've been thinking of my life as a cake, baking in the oven.
Sometimes my life can feel a bit like this cake... Candy Mountain Charlie!
I know that all the ingredients I need to become a complete fulfilled individual are already inside me. I just need to let them sit and let the pressure do it's work, forming me into something I've been craving for. Right now my cake is only half baked but I hope that in time I'll be something I'm happy with. But no point dwelling on it too long. After all, if you watch the cake too long it'll never finish baking! So best just to get on with life and see how things turn out.
Last weekend an accident happened that would shoot me to the next level of ambulation. While walking around with a friend a wire on my leg brace broke. There is a wire on each side of the leg brace so I was able to make it back to my car without too much trouble but it became clear that I needed to have my leg brace fixed.
I gave the broken brace to my orthotist, who sent it off for a tune up from the manufacturer. I attempted to use Roboleg, the computer controlled leg brace, in the mean time. I soon remembered why I stopped using Roboleg: the brace is heavy, clunky, and difficult to control. I was quickly getting more and more frustrated.
I had used my AFO (Ankle Foot Orthosis), the ankle brace, in therapy and at the pool but I had yet to use it for any length of time out in the real world. After only one day with Roboleg, I decided to put on my AFO and try wearing it while my leg brace was being fixed.
I trialed out the AFO on a school day, with great results. I expected to feel more tired than usual, which I did. Other than this I didn't suffer any great consequences from the switch. As I continued to wear it throughout the week I felt more comfortable, stronger, and more mobile. Every day my endurance improved and I was able to walk farther. An added bonus is that the AFO can be hidden under my jeans, making me a little less obvious (though the canes end up giving me away).
Me walking without canes with the AFO. I can only do this for short bursts right now, but this is my future.
These experiences spurred on the inevitable epiphany:
I don't need my leg brace any more!
I knew this day was coming but until this week I didn't realize that the time had already come. This accident caused me to move onto greater devices of mobility. I have pure chance to thank for huge improvements to my walking. I can use a brace that has no wires that can break, no computers that can malfunction, and is powered by my own muscles.
I have my leg back again!
