1. We got the call that the motorized leg brace finally came in. I'm going to get it fitted for my leg on Monday. I'll post pictures as soon as I can. I'm really freakin excited!!!
2. I'm asking everyone to go to helenexner.com and check out her new music video (or just look at the video below). I would ask that everyone seriously consider buying one or both of her CD's. Besides simply being an amazingly talented artist, she held multiple fundraisers on my behalf. She received nothing out of it, giving her own time and talent to help raise money for equipment that I will need now and in the future. Helen you're amazing; you're not too tall at all, you're just perfect.
Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol
Friday, February 25, 2011
Sunday, February 13, 2011
Wish my life came in four wheel drive
Because I'm stuck.
Things are actually going fairly well. I'm working out in PT, swimming at the YMCA, and walking a whole bunch with my brace. It's not that things haven't improved at all; look at last year compared to now: no movement vs. walking around a ton. So in perspective things look pretty good.
I'm just kind of stuck in the "making do" phase, where I have to live with what I've got and learn to use it. Not to say that I won't improve, but there's not much I can do to force new nerves to grow any faster. So in the meantime I'm stuck waiting. I have the hope of my new brace coming, which is very exciting believe me. But it'll probably be a few weeks until it comes in, gets adjusted, and I can finally use it. I'm working hard to strengthen the muscles I already have, but I'm only one or two miles in and I have the rest of the marathon to finish.
My dad once told me that war was 99% pure boredom and 1% pure terror. If that's the case this is definitely war on my body. It's not like I don't have things to do here (lord knows I wish I could do away with a few) but my routine stays the same. I'm not even close to done and yet the road keep stretching on into the distance. I just wish I could have a clear concise YOU DID IT! and move on. Such is life I guess.
And for all those other people who are single on Valentine's Day, here's to us:
Things are actually going fairly well. I'm working out in PT, swimming at the YMCA, and walking a whole bunch with my brace. It's not that things haven't improved at all; look at last year compared to now: no movement vs. walking around a ton. So in perspective things look pretty good.
I'm just kind of stuck in the "making do" phase, where I have to live with what I've got and learn to use it. Not to say that I won't improve, but there's not much I can do to force new nerves to grow any faster. So in the meantime I'm stuck waiting. I have the hope of my new brace coming, which is very exciting believe me. But it'll probably be a few weeks until it comes in, gets adjusted, and I can finally use it. I'm working hard to strengthen the muscles I already have, but I'm only one or two miles in and I have the rest of the marathon to finish.
My dad once told me that war was 99% pure boredom and 1% pure terror. If that's the case this is definitely war on my body. It's not like I don't have things to do here (lord knows I wish I could do away with a few) but my routine stays the same. I'm not even close to done and yet the road keep stretching on into the distance. I just wish I could have a clear concise YOU DID IT! and move on. Such is life I guess.
And for all those other people who are single on Valentine's Day, here's to us:
Thursday, February 3, 2011
New Brace
This has been in the works for a while but I didn't want to post anything until I heard for certain. I initially was called in by the orthopedist in town who takes care of the leg brace I have now. They wanted my to come look at a possible new leg brace from a company called Otto Bock. They had me look at at the Sensor Walk, a stance control KAFO (Knee Ancle Foot Orthosis) which instead of wires to hold and release my knee uses a computerized knee joint.
You can watch the video to get a better idea of how it works. It uses a combination of a motor at the knee, signals from sensors underneath my foot, and a small computer which I have to carry in a pocket. I was told that the technology has been around for years, used in computerized artificial legs for amputees. It's only in the last 2 or 3 years that they've started using these in regular braces. This is truly state of the art machinery.
This was back in December and there was a great deal of uncertainty over whether I would even qualify for a new brace. For one thing my current brace was only 6 months old at the time. Plus with the brace I was using I was continuing to show improvement. We were worried that in the minds of an insurance company this would translate as "he's doing fine with what he has, so why should we shell out any money?"
What were the problems of my old brace? The stance control system that I am currently using uses a a set of wires that are strung from the ankle to the knee. It uses the tension of the wires to control when the knee is locked or unlocked. This can be problematic for several reasons: The biggest is that the knee has to be entirely straight in order for the knee to lock. If I didn't swing my leg out with precisely the right amount of force the leg will buckle. The wires are connected to the foot behind the ankle, causing the knee to unlock when the angle of the foot decreased i.e. when I'm stepping forward. This is highly useful because I don't have to bring my leg through with my knee locked out straight; it would lock again once I swung the leg straight. Unfortunately since when it locks or unlocks is based on the angle of my ankle, if I lean too far forward the leg would buckle (are you sensing a pattern here?). The brace was highly useful, allowing me some mobility for the first time, but it had many flaws. (See pictures here: http://theturtlewalks.blogspot.com/2011/01/boot-camp.html)
While it wasn't certain whether I would be approved or not, the vendor brought in a trial brace to see if the technology would work with my particular type of injury. Since it was made to fit practically anyone it didn't fit very well but the technology was amazing. It allowed me a sense of stability I had never really known. My old brace did give me mobility but I constantly had to be on guard in case of a sudden buckling (which happened fairly often).
It's been a few days now since the insurance company finally approved the brace. Today I went in to the Orthopedist's office and they made a fiberglass-caste of my leg, which will be sent off to make the custom-built brace. I don't know exactly how long it will take for me to the actual brace but it's coming. It's finally coming.
Monday, January 24, 2011
Phantom Wheel Syndrome
I've been back from Kennedy Krieger over a week now and many things are positive. I've heard the words "oh my, you look so much better than you used to" describing my new walking pattern (a backwards compliment if I ever heard one). I have to give all the credit to my wonderful therapists for slowing my butt down, forcing me to look at the particular features of my gait that they felt needed improvement. Lo and behold, it worked! Every once and a while it's good to have a reminder why I'm listening to my therapists: because they know what they're talking about.
To keep this up I've been trying to incorporate walking into my daily activities as much as possible. I've started leaving my wheelchair in places that are not easily accessible or leaving my crutches more readily available. This is generally a good strategy to use, since I am more likely to use my crutches then hop over one legged across the house to get my wheelchair. My parents found that they have to place chairs in spots that I would normally wheel up to, for example the kitchen table.
It's been a little over a year since my wheelchair became my chief mode of transportation. This recent change to a more mobile lifestyle has given rise to an interesting phenomenon that I've nicknamed Phantom Wheel Syndrome. The crutches force me to pull the seat relatively far back in order to sit down; after I sit down I have to pull my seat back toward the table again. Now any typical two legged ambulator would grab the front or back of their chair and scoot forward toward the table. My first reaction for the first few times was to spin my hands at the side of my chair... only to realize I had no wheels there. It is a very strange experience to find that you have become so used to a wheelchair you simply expect it to be there.
A friend at Kennedy Krieger Christina, who also uses both wheelchair and crutches, remarked how she also reaches out on the side of her seat occasionally only to find the wheels of her wheelchair missing. It was like reaching out with a limb and suddenly find it missing. I have some experience with this. It is a kind of an upgrade to loose your wheels for a set of legs, one many would make I know. Yet somehow the wheelchair has become a source of strength and mobility; more than just a mode of transport it had come to define my new life. It limited me to places with accessible ramps (mostly) but it also opened up the world when I could only look at it through a hospital room window. Freed from the confinement of rehab I got to join my family on outings, showing off wheelies and other tricks that I had learned. Moving on to crutches full time is indeed an upgrade but I still feel a sense of loss.
It may be silly to mourn for a wheelchair but I feel like it deserves a few passing thoughts. I'm not completely done with it yet but as it slowly is phased out I will remember all the places it took me to, places I didn't think were possible. It's carried me this far.
To keep this up I've been trying to incorporate walking into my daily activities as much as possible. I've started leaving my wheelchair in places that are not easily accessible or leaving my crutches more readily available. This is generally a good strategy to use, since I am more likely to use my crutches then hop over one legged across the house to get my wheelchair. My parents found that they have to place chairs in spots that I would normally wheel up to, for example the kitchen table.
It's been a little over a year since my wheelchair became my chief mode of transportation. This recent change to a more mobile lifestyle has given rise to an interesting phenomenon that I've nicknamed Phantom Wheel Syndrome. The crutches force me to pull the seat relatively far back in order to sit down; after I sit down I have to pull my seat back toward the table again. Now any typical two legged ambulator would grab the front or back of their chair and scoot forward toward the table. My first reaction for the first few times was to spin my hands at the side of my chair... only to realize I had no wheels there. It is a very strange experience to find that you have become so used to a wheelchair you simply expect it to be there.
A friend at Kennedy Krieger Christina, who also uses both wheelchair and crutches, remarked how she also reaches out on the side of her seat occasionally only to find the wheels of her wheelchair missing. It was like reaching out with a limb and suddenly find it missing. I have some experience with this. It is a kind of an upgrade to loose your wheels for a set of legs, one many would make I know. Yet somehow the wheelchair has become a source of strength and mobility; more than just a mode of transport it had come to define my new life. It limited me to places with accessible ramps (mostly) but it also opened up the world when I could only look at it through a hospital room window. Freed from the confinement of rehab I got to join my family on outings, showing off wheelies and other tricks that I had learned. Moving on to crutches full time is indeed an upgrade but I still feel a sense of loss.
It may be silly to mourn for a wheelchair but I feel like it deserves a few passing thoughts. I'm not completely done with it yet but as it slowly is phased out I will remember all the places it took me to, places I didn't think were possible. It's carried me this far.
Wednesday, January 19, 2011
Boot Camp - Week 2
So week 2 was more of the same things. It was a ton of work, lots of sweat, and a tear or two.
The only major change in the program that we did was add a number of yoga exercises into the routine. This allows me to strengthen and stretch at the same time. I'll scan in those at a later point but for now I mostly wanted to share the pictures and videos that were taken throughout the week.
Walking with two canes instead of crutches.
Working on the underwater treadmill with my awesome therapist Brooke.
Walking up a set of stairs.
Walking with the support of the TheraStride.
The only major change in the program that we did was add a number of yoga exercises into the routine. This allows me to strengthen and stretch at the same time. I'll scan in those at a later point but for now I mostly wanted to share the pictures and videos that were taken throughout the week.
Walking with two canes instead of crutches.
Working on the underwater treadmill with my awesome therapist Brooke.
Walking up a set of stairs.
Walking with the support of the TheraStride.
Friday, January 7, 2011
Boot Camp
The beginning of a new year. How do I begin this wondrous new adventure of 2011? Sweating bullets as I work my butt of at Kennedy Krieger outpatient.
They've nicknamed this exciting time "Boot Camp" for the way it crushes your soul like a giant combat boot. I'm here for two weeks; I come in for three(ish) hours a day, five days a week for two weeks. This intense bout of therapy is designed to create a compact program to act as a sort of band-aid to the holes in your home exercise program.
Each boot camp stay in unique to the patient and injury. For me, we've been focusing a little on strength and flexibility but most of our time is spent on walking endurance and gait training (the placement, movement, style, etc. that are involved in proper walking). They do this in several ways:
THERASTRIDE
The first is through a machine called the Therastride. It's a harness support system suspended over a treadmill. A computer controls the amount of weight that's put on the legs, the speed of the treadmill, etc. It allows for patients with varying injuries to work on walking patterns without gravity interfering.
BRACE USING CRUTCHES/CANES
The second is through the use of my stance control KAFO(Knee Ancle Foot Orthopedic) brace. I've talked a little about it before but for those of you who don't know, the brace allows me bend the knee when advancing the leg and keep it locked when I'm standing on the leg. This allows me to walk with the help of a walker or crutches. The knee joint on the brace actually broke right before Christmas but I'm happy to report it's back up and working now.
This isn't the exact model of my brace but this is the closest picture I could find.
This is me walking on my dock this past summer.
I'm normally using a pair of elbow crutches to walk around with, having stopped using my walker. My therapist are working on perfecting the way I walk, shifting my weight and moving more fluidly. In addition I'm supposed to minimize the amount I use the crutches for support in hopes to get me away from crutches. This last session we experimented with using two canes instead of the bulky crutches, an pretty successful exercise. It was more work since the canes offer less support than the crutches. While not a permanent solution just yet they offer another ray of hope for the future. I'm already begging to look up cool canes online.
STAIRS
Using the crutches and leg brace, they have been teaching me to go up and down flights of stairs. This is somewhat complicated by the fact that I have to carry my crutches up one handed as well the fact that if I lean too far forward the brace unlocks. I end up doing a weird duckwalk up the stairs but I can do it and that's what counts I guess.
As far as the personal stuff, I'm staying with my aunt and uncle again. They graciously opened their home again for our brief stay. It feels a bit weird to be back again in part its because I have spent more time living in their basement then I have at my parents house. It was like coming home again. My cousins are the same random balls of energy I remember. They have however become more clever: I used to be able to chase my little cousin around the basement for hours in my wheelchair. He's since figured out that if he runs up quickly and puts on my brakes he has time to escape. All I'd do if I caught him was tickle him but the import of that seems lost on him (he's 6).
This weekend I got to visit with the extended relations. We sat around drinking beer while watching the Ravens vs Chiefs. Lots of fun, lots of food, lots of laughter, lots of running, jumping, wrestling, screaming kids. A good time.
I've got a week to go but time is slipping by too fast. It's a ton of work but I'll definitely miss this place when I leave again. I already do.
BRACE USING CRUTCHES/CANES
The second is through the use of my stance control KAFO(Knee Ancle Foot Orthopedic) brace. I've talked a little about it before but for those of you who don't know, the brace allows me bend the knee when advancing the leg and keep it locked when I'm standing on the leg. This allows me to walk with the help of a walker or crutches. The knee joint on the brace actually broke right before Christmas but I'm happy to report it's back up and working now.
This isn't the exact model of my brace but this is the closest picture I could find.
This is me walking on my dock this past summer.
I'm normally using a pair of elbow crutches to walk around with, having stopped using my walker. My therapist are working on perfecting the way I walk, shifting my weight and moving more fluidly. In addition I'm supposed to minimize the amount I use the crutches for support in hopes to get me away from crutches. This last session we experimented with using two canes instead of the bulky crutches, an pretty successful exercise. It was more work since the canes offer less support than the crutches. While not a permanent solution just yet they offer another ray of hope for the future. I'm already begging to look up cool canes online.
STAIRS
Using the crutches and leg brace, they have been teaching me to go up and down flights of stairs. This is somewhat complicated by the fact that I have to carry my crutches up one handed as well the fact that if I lean too far forward the brace unlocks. I end up doing a weird duckwalk up the stairs but I can do it and that's what counts I guess.
As far as the personal stuff, I'm staying with my aunt and uncle again. They graciously opened their home again for our brief stay. It feels a bit weird to be back again in part its because I have spent more time living in their basement then I have at my parents house. It was like coming home again. My cousins are the same random balls of energy I remember. They have however become more clever: I used to be able to chase my little cousin around the basement for hours in my wheelchair. He's since figured out that if he runs up quickly and puts on my brakes he has time to escape. All I'd do if I caught him was tickle him but the import of that seems lost on him (he's 6).
This weekend I got to visit with the extended relations. We sat around drinking beer while watching the Ravens vs Chiefs. Lots of fun, lots of food, lots of laughter, lots of running, jumping, wrestling, screaming kids. A good time.
I've got a week to go but time is slipping by too fast. It's a ton of work but I'll definitely miss this place when I leave again. I already do.
Wednesday, December 29, 2010
A Year
One year ago today I was in a car accident. I broke two vertebrae, both arms, bashed up my kidneys and a bunch of other internal organs. I had stayed up the previous video games and then I slept the car ride down the coast. And then I was unconscious for the rest of the day. I can hardly remember that day and yet it is a day I will never be able to forget.
I debated for so long on what I should write today, on this anniversary of sorts. How do I put down into words a years worth of changes? I've tried in my previous posts and haven't managed to cover it.. Read those if you want to see my transformation, but I can't spend today dwelling on it.
I was going to show what happened to me through my scars, but then I remembered I had already done that. (back, arm, etc.) The scars are a little more faded but they are still there for everyone to see. Everyone I meet see those scars, the symbols for what I have gone through. But I am not the only one going through this; everyone who has supported me through this bears their own scars, some more some less, which unlike mine cannot be seen.
Instead I'm going to turn this outward. I want to use this space to thank those that got me this far. You can't go through something like this alone. These people have brought me, kicking and screaming sometimes, to where I am today. Thank you.
My parents, for they have given me strength, watched my progress from the start, held me while I cried, listened to my rants, drove cross country (twice), and done so so so much more. My various doctors, nurses, aids, etc., for without all of them I wouldn't be alive. My brothers and my sister, who reminded me that no matter what happens I will always be that little kid with scraped up knees who couldn't spell. My extended family, who sent me love, prayers, presents, clothes, and gave me a support network when I needed one. The three cousins who I lived with in particular, who reminded me that there are few joys in life better than nerf guns, video games and legos. My different therapists: Maria, Alicia, Meredith, Stephanie, Beth, Varsha, Marjorie, Carol, Sue, Lynn Peter, Mindy, Joan … the list goes on and on (I”m sorry for those I forgot because there are a zillion of you); you have given me the drive to push myself when I had none. Moria, who was my own private drill sergeant, life coach, swim coach, sounding board, friend, and so much more. My friends who I met in rehab, who were already fighting when I was just learning how; keep it up, for the day when one of us gives up hope all of us loose. My friends out in Colorado, Washington, etc., you guys called, texted, facebooked, emailed, webcamed, reminding me when all my thoughts were turned into dark places that I was not alone. Kayla, who has been there through the darkest dark and the brightest light, reminding me that I was loved and that being too sane will drive you crazy sometimes. Those who came to my sisters fundraisers and donated even at a time when everyone is hurting. Those across different states and different continents who have sent me prayers, leaving me staggered by the size of a chain of prayers that stretches the globe. Those I cannot mention because it is too painful; you know who you are and thank you.
This list doesn't even begin to do justice to all the people who have gotten me through this past year. It is humbling to think of all the people and more coming together for me. I couldn't have possibly imagined all of this before this last year. I was never really alone but now it is so much more visible. I am so lucky to have this amazing support network of people who care.
I debated for so long on what I should write today, on this anniversary of sorts. How do I put down into words a years worth of changes? I've tried in my previous posts and haven't managed to cover it.. Read those if you want to see my transformation, but I can't spend today dwelling on it.
I was going to show what happened to me through my scars, but then I remembered I had already done that. (back, arm, etc.) The scars are a little more faded but they are still there for everyone to see. Everyone I meet see those scars, the symbols for what I have gone through. But I am not the only one going through this; everyone who has supported me through this bears their own scars, some more some less, which unlike mine cannot be seen.
Instead I'm going to turn this outward. I want to use this space to thank those that got me this far. You can't go through something like this alone. These people have brought me, kicking and screaming sometimes, to where I am today. Thank you.
My parents, for they have given me strength, watched my progress from the start, held me while I cried, listened to my rants, drove cross country (twice), and done so so so much more. My various doctors, nurses, aids, etc., for without all of them I wouldn't be alive. My brothers and my sister, who reminded me that no matter what happens I will always be that little kid with scraped up knees who couldn't spell. My extended family, who sent me love, prayers, presents, clothes, and gave me a support network when I needed one. The three cousins who I lived with in particular, who reminded me that there are few joys in life better than nerf guns, video games and legos. My different therapists: Maria, Alicia, Meredith, Stephanie, Beth, Varsha, Marjorie, Carol, Sue, Lynn Peter, Mindy, Joan … the list goes on and on (I”m sorry for those I forgot because there are a zillion of you); you have given me the drive to push myself when I had none. Moria, who was my own private drill sergeant, life coach, swim coach, sounding board, friend, and so much more. My friends who I met in rehab, who were already fighting when I was just learning how; keep it up, for the day when one of us gives up hope all of us loose. My friends out in Colorado, Washington, etc., you guys called, texted, facebooked, emailed, webcamed, reminding me when all my thoughts were turned into dark places that I was not alone. Kayla, who has been there through the darkest dark and the brightest light, reminding me that I was loved and that being too sane will drive you crazy sometimes. Those who came to my sisters fundraisers and donated even at a time when everyone is hurting. Those across different states and different continents who have sent me prayers, leaving me staggered by the size of a chain of prayers that stretches the globe. Those I cannot mention because it is too painful; you know who you are and thank you.
This list doesn't even begin to do justice to all the people who have gotten me through this past year. It is humbling to think of all the people and more coming together for me. I couldn't have possibly imagined all of this before this last year. I was never really alone but now it is so much more visible. I am so lucky to have this amazing support network of people who care.
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