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

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.

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.

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:


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.


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.

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.