Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol

Sunday, February 10, 2013

My Story As Of Today: From Wheelchair To Walking

I was 20 at the time of my accident. I've moved around a bit in my lifetime. My dad worked in the army and then the Public Health Service. We moved everywhere from West Virginia, Germany, Wisconsin, to Seattle. Not strongly connected to one place very closely, I was going to college at Colorado State while my parents lived in North Carolina. Minus a few crazy events here and there I had a pretty boring childhood and early adulthood. I had never even had a broken bone.

Me pretending I know what I'm doing on a longboard.

After spending Christmas with friends, I flew out to spend New Years with my family. We were up in Maryland where much of my extended family lives.

THE ACCIDENT - December 29th, 2009.
The plan was to spend a few days in the Baltimore area then drive home to North Carolina the day of the 29th. I've always hated long car rides, so I always tried to sleep through them. I figured I'd be sleeping the entire ride to North Carolina, so I spent the entire night before my accident playing video games on my little cousin's XBOX (Lego Indiana Jones). I was asleep practically before we left my Aunt and Uncle's driveway. I did wake-up momentarily to hug my older sister as we dropped her off at the airport but otherwise I was down for the count.

How I spent the last night before the accident. I finished the entire game about 30 minutes before everyone woke up.

I slept in the back seat up against the door with my seat-belt on. From what I'm told, my Dad was driving on the freeway when he saw the car ahead of him stop suddenly. My dad slammed on the breaks and our car started spinning wildly out of control. Our car slammed into the bumper of a neighboring truck.

My Mom was in the front seat and had been knocked unconscious. My dad, awake and unharmed, told me later that I was screaming my head off; I have no memory of this. They shipped my off to Shock Trauma Center at the University of Maryland. I had two of my vertebrae (L1 and L2) completely shattered, broke both arms, and had lots of other internal damage. They put two stabilizing rods on either side of my spine but the surgeons felt it was better not do any surgery that could damage potentially intact nerves. The bones in my arms were set and a metal rod was placed in each.

I broke L1 and L2(top of Lumbar curve) but my injury level is considered T10(bottom of Thoracic curve) since that was the initial line of what I could move.

I woke up not able to move anything below the level of my belly button. The next few days were a morphine haze interrupted by a swirl of visiting family. I was sort of emotionally numb, staying upbeat the entire time. I just kept repeating that I wasn't going to be stuck using a wheelchair. They moved me out of there and into a rehab hospital. I starting to learn about the realities of my new life and what it would be like to move and live in a wheelchair. 

I eventually went through all 5 stages of grief and loss over my legs. I felt that the part of my life where I walked had died.

It was about 6 days after the accident when I finally broke down. I wasn't able to wheel myself around with both arms in slings, I couldn't move very well, couldn't even control when I shit, and didn't know what I would do. It all hit like a ton of bricks.

NURSING HOME (rebreaking my right arm)
About a week into my new rehab I rolled on my right arm in therapy and rebroke it. My surgeons, extremely irritated with me, said that I wasn't allowed to continue therapy there for at least a month and advised me to go to a nursing home.

In the nursing home after I rebroke my arm.

Though some of my darkest moments were in that nursing home, this was the place that I regained movement in my legs. After a month not moving anything I wiggled my right big toe. The next day I wiggled my left big toe. Progress slowed for awhile but over the next few weeks I regained good chunks of my right leg back.

KENNEDY KRIEGER
During my stay at the nursing home we heard about the spine program at Kennedy Krieger Institute. An offshoot of Johns Hopkins, the hospital had a reputation for significantly improving function after spinal cord injuries. A few people warned me, including my physical therapist at the nursing home, that they felt Kennedy Krieger made too many promises. I was hesitant but after the dismal conditions at the rehab hospital and the nursing home I felt that anything was worth a shot.

The staff of KKI helped put my mind at ease and helped push me forward. Shown here trying out e-stim on my leg. 

It turned out to be better than I could have ever hoped. Primarily a kids hospital, the spine program's inpatient wing will take you if you are under 21. Full of energy and excitement, the feelings were infectious. They advocate activity based rehab. This is the idea that muscles needs to be used and exercised, in the hope to promote new nerve growth. They make no promises but the research shows that if the spinal cord isn't cut completely the working of muscles will help to promote the growth of nerves. This is accomplished through electrical stimulus, in the form of portable electrical stim-units and electrical stim-bikes. They use these alongside more traditional mobility, balance, and care training.

Showing off my wheelchair biceps and my scars.

MORE BACK SURGERIES
Repeat imaging near the end of my inpatient stay showed that the broken pieces of spinal column were pressing on the cord. I had gotten significant function back in my right leg by this time but the left leg was still mostly inert. Even electrical stimulus couldn't get the muscles in the left leg to move; the hope is that another round of surgeries could improve my overall function.

They cut into my back and removed the broken pieces of spinal column. They then put in a metal cage and put the pieces of bone back in. The alive bone cells would regrow into the shape of vertebrae, this time without pinching my spinal cord.

It is safe to say I've seen more hospital beds than I care to mention. Here I am reading a stack of get-well cards

I stayed in Baltimore with my Aunt and Uncle until the end of the summer, doing outpatient rehab at Kennedy Krieger. While the effect wasn't immediate, over the next few weeks I began to get significant function back. I had my right leg completely back by the end of the summer and few more trace muscles in the left leg. I now had enough function back to walk around with a leg brace for short distances, with the help of a walker or crutches.

 Out stretching my legs.

COLORADO
It was my goal to return back to Colorado State again. I was still using the wheelchair but I felt confident enough to move out there on my own. I happened to have an older brother who was taking graduate classes at CSU at the time who was willing to share an apartment. I was excited and pumped to start things off again.

Though things started off strong, I eventually started having various health problems. I'm not naturally self motivating so when I felt down I would just lay in bed which only made things worse. Eventually I was in so much pain I stopped going to class altogether. By halfway through the semester I hit my lowest point ever. My mother came for a visit and saw the condition I was in. She asked if I wanted to move back home with them and I said yes.

NORTH CAROLINA
Having someone to kick me out of bed was exactly what I needed and my parents obliged. They started by getting me to wheel around and to do more and more walking. Though this was still difficult I got better. I slowly began to work up stamina and endurance. I had a 3 times a week PT program and worked out/swam at the YMCA. I transferred to Elizabeth City State University, our city's university. Though no Colorado State University they were close and offered a biology degree program. I'm still in North Carolina today, working on finishing up my degree. I'm set to graduate spring 2013.

My physical function continues to improve. I go periodically to Kennedy Krieger for additional rehab. These 2 week bouts, nicknamed “Boot Camp”, yield the most exciting results. In January 2011 I trialed using two canes instead of walking with crutches. In June 2011 I trialed using an AFO (Ankle Foot Orthosis, up to just below the knee) instead of the KAFO (Knee Ankle Foot Orthosis, up to the hip) I had used up to that point. I started out the fall semester of school vowing that I would not bring the wheelchair from the house; every time I left the house I would have to take my leg brace. I was still using my KAFO when I walked anywhere and used the AFO only in therapy. The KAFO was a heavy mess of wires and levers. October 2011, one of the wires on my KAFO snapped during a long holiday weekend. Since I had sworn to not take the wheelchair from the house I used my AFO the rest of the weekend; I never went back.

Trialing out two canes instead of crutches.

I finally ditched the wheelchair completely this past January, two years after my accident. I was using the AFO and canes well enough that I felt it was time. It was hard to get used to at first but I managed eventually. My wheelchair now serves only as a bed for my cats.

My most recent accomplishment is to have regained enough strength and balance to switch to walking using only one cane. Not quite as dramatic a shift as some of my others, it still wasn't easy to adjust to losing a walking aid. I continue to work toward my eventual goal of walking without any leg braces or canes. I'm not there yet but these past two and a half years have shown me it's more than possible.

With one cane and my AFO.

I'm not the boy I was. Who can say what I'll do with my life now since I almost lost mine. The focus of my journey has changed quite a bit, from learning how to use my wheelchair to walking again. I'm walking full time now but it wasn't quick or easy.

I fully acknowledge I was lucky my injury wasn't as severe as it could have been and that I had a lot of help along the way. I can't speak for everyone with a spinal cord injury, since each experience is different. I do know that the most important thing is to be up and aiming toward something. Whether this is finishing the next level of school, getting back function, or simply being fit enough to try something new. At one point I would have stayed in bed and given up. And if I had stayed there I would never have gotten out of my chair. So who knows where you might end up.

One suggestion was to get shoes with more ankle support. I'm pretty sure they were talking about hiking boots but since I have a sense of style I got a pair of Chuck Taylors, the old school high top Converse. Though I wasn't expecting these to make any difference, I found myself walking better and better.



I began walking  so well that I decided to leave the cane at home. That first day was kinda rough but after that I just kept going. It's now been 2 weeks since I used my cane at all! 

No I didn't break my canes. They're in the corner collecting dust!

Artwork

Here are some of the art pieces that I've been working on.
Enjoy!




























Saturday, February 9, 2013

Boot Camp Week 2

For those who missed Boot Camp - Week 1

Spinal Cord Rehab Boot Camp - Week 2 
Highlights: I'm no longer using a cane to walk! Plus parties and artwork!

Monday, Day 5:
On Monday I used the Therastride, a very useful (if uncomfortable) machine. The harness holds you over a moving treadmill and with the assistance of some therapists it allows those that haven't walked in a very long time a chance to step again. I no longer need much of any direct help though my therapists are still there to assist my legs and hips as needed. The harness takes a little of my weight off the ground so I can focus on walking correctly, instead of focusing on simply not falling over.

 An old picture of me on the therastride. This was back when I needed someone to help with both legs (I only need help with the left leg now).

Another machine they've had me use before is a vibration plate. Depending how far apart you put your legs, the more the device throws off your balance. The last time I attempted this, a few boot camps ago, I could barely stay on at all. Now I'm able to work my legs halfway out, which is a medium difficulty. Either way I still end the session just as wobbly.

Your whole body feels like it's buzzing after you step off the vibration plate.

A large part of our focus these two weeks is on my hamstrings (the muscles behind the knee that allow most people to bend their legs back) muscle groups that have slowly been returning. In previous boot camps I focused on getting these muscles to contract at all. Now I can get the muscles to contract consistently but they're still very weak. I can get my leg to bend in the pool and when I'm lying on my side, though bending the leg on land is still a work in progress. Still, to see my leg act like it's supposed to in the pool is encouraging.

These are the hamstrings.

Tuesday, Day 6
On Tuesday we went to a lower floor to the children's gym to use the split belt treadmill. It has two rotating belts instead of just the one, with adjustable speed on both belts. This allows me to work on the timing of my walking. We had planned to use it the first week but it was having mechanical issues. This week everything worked fine with each leg getting its own individualized workout.

Harder than it looks to have two legs at different speeds.

Wednesday, Day 7
One of the strangest experiences of my two weeks but also one of the best was the "Bro-Party". There were a few other early 20-something guys there for bootcamp so someone decided to throw a "bro-party", a tradition one of my fellow patients had started at a previous boot camp. While doing our various balance exercises, we listened to "bro" music, wore cool sunglasses (I got the leopard print) with fake mustaches, while playing Gatorade pong (we're in a hospital, gotta keep it PG). It was one of the strangest experiences of my two weeks but I had a blast! My team ended up winning so that was an extra bonus.

 Me at the bro-party with shades and a fake mustache. Brotastic.

Thursday, Day 8
Another group of us got into a dance-off playing Just Dance for the Wii. It was me, a young girl using a walker, and an old guy in one of the standing machines they have around the gym. It was hard to come to a consensus on which song to play, though mostly because all 3 of us were so indecisive. I don't remember who ended up winning as far as points but we all looked extremely silly so it's a draw in the end. But we had fun and I got to spend some of my exercise time dancing (badly) to some of my favorite songs.

 We were not nearly this coordinated.

Friday, Day 9
The last day, like the first day, is always reserved for evaluations and tests to see how I've progressed over the two weeks. I did make significant improvements, walking slightly more even on the Gait Rite, the machine that takes a digital image of your walking pattern. I also improved my times in all the walking tests they had me do. I can attribute most of this to my therapist teaching me how to use my brace so that I get more spring in my step, which propels me forward.

.

They also gave me a home program of exercises that I can do from my room, such as spelling out the alphabet with my weak leg (this practices strength and coordination). It's full of exercises that'll keep me busy and challenged hopefully for the next 6 months.

AFTER I GOT BACK
When I got back to North Carolina I started putting into action the suggestions of my therapists. One suggestion was to get shoes with more ankle support. I'm pretty sure they were talking about hiking boots but since I have a sense of style I got a pair of Chuck Taylors, the old school high top Converse. Though I wasn't expecting these to make any difference, I found myself walking better and better.


I began walking  so well that I decided to leave the cane at home. That first day was kinda rough but after that I just kept going. It's now been 2 weeks since I used my cane at all! 

No I didn't break my canes. They're in the corner collecting dust!

Artwork
I've been in kind of a winter funk and hadn't felt like writing for the last couple of weeks. I did however channel that weird mood into artwork. I've post some of my paintings up here already but you may not know I also enjoy drawing. I was given a giant sketchbook for Christmas and have been slowly filling it up ever since (plus more paintings). These are just a few examples of what's been filling my time instead of my blog (sorry internets!). I have dozens more and I will post more in the coming days. Enjoy.