Back Home: Swimming, Biking, and Avoiding Work

Sorry I haven't written in a while. I've been adjusting to getting back into my life in North Carolina. I was expecting to be energized and inspired, which is true for the most part (though not as much as I'd hoped).

Swimming
It's finally warm enough here to go swimming outside! I'm lucky in that my parents live on an inlet sound. The water is warm, only a little salty, and no chlorine! I still do go to the YMCA but there's something just so much more refreshing about swimming in nature. My goal is to swim every day; I haven't quite lived up to that yet but I'm getting close.



Fins
Having SCUBA dived in a previous life I had a pair of fins lying around. Though my dad was tempted to get rid of all the SCUBA gear since no one's used it in years I asked him to save the flippers. When I'm swimming normally I have enough movement in the water to move my left leg in almost any direction and in any motion, though speed may vary. The right leg is stronger than the left so I have a slight tendency to veer toward the left. For anyone who's used flippers, they exaggerate your every movement. Now instead of listing slowly to the left I steer into left wall practically every kick. Though not what I want it to be yet, it's good to have something to work on I suppose.



Biking
I have been using the hand bike more and more every week. I don't use it every day but I make sure to use it a couple of times each week. The area around our house is flat, with miles of farmland in between us and town. At the moment the top distance I've gone is about 8 miles (we clocked it on the car odometer) but I want to go farther still. I felt tired afterward but not exhausted, so I know I can go farther.



Otherwise things have been pretty calm. I'm picking out new classes for next semester but for the mean time I'm enjoying my relative time off (from school work anyway). I have good friends who drag me out to make sure I spend this time doing something fun, always walking of course. So all in all things even out I guess. My life hasn't changed too dramatically but enough that I've noticed.



What to look forward to: the disappearance of my wheelchair. I've been keeping it around, more as my security blanket than anything else. Though I only use it in the house now, both my doctors and therapists have told me to ditch it completely. But it's difficult after all this time. So they've given my parents permission to hide my wheelchair! We'll see how this goes. It hasn't happened yet but my mother has been sending me warnings that it'll happen soon. I'm going to miss you wheelchair.



If you haven't seen Dr. Horrible's Sing Along Blog you need to! From Joss Whedon, with Neil Patric Harris and Felicia Day. It is amazing!

Council of Disabled Animal Friends Blog

So that I'm not filling up the posts of this blog up with the adventures of animal friends, the Council of Disabled Animal Friends now have their own blog!
Check out councilofdisabledanimalfriends.blogspot.com. There are already new members with more every day. For those who love disabled stuffed animals, disabled animals, disabled humans, or any of these, this blog is for you.

Boot Camp: Week 2

My have gotten more and more spread apart as I got more and more tired from Boot Camp. Notice this one is the week after boot camp. I was going to wait until I uploaded the pictures and movies off my camera but I left it in Maryland! It's on it's way back so I decided to post in the mean time. I'll post pics and vids when I have them.

Over the weekend I went kayaking! It was a blast and I'll be doing it again, for sure! The only bad thing was of course I got sun burned (pasty white boys tend to burn). My legs were both angled with my knees toward the outside of the kayak so only the inside of my legs burned. It didn't really hurt, it just made my legs look really unusual. I think I'm going to have access to a kayak this summer so I should be posting about this again soon.

After a relaxing weekend it was difficult to return to the riggers of boot camp. Things were very similar to the previous week. I increased the amount I walked with both one and two canes, I walked on the Therastride, walked on the free walking harness, I walked with the AFO (ankle foot orthosis), etc. Read the last couple of entries if you want to see more on those.

Rigidity Splint

On Tuesday the rigidity splint was made. This essentially is a cast of my foot with the foot flexed backward. Since my foot naturally drops down (I have no muscle control of that foot) my ankle joint has become unnaturally tight. This is especially bad because that tightness causes the knee to buckle if the ankle is braced; this makes walking with an AFO considerably more difficult. The hope is that this splint will keep my foot in a more neutral position and slowly loosen my ankle up. If it will loosen up my ankle it's definitely worth a try.


Picture this with a slit down the center so I can take it on and off.

The cast was made very quickly on Tuesday. It should surprise no one that I had it made it green. The therapist who made it took it back with her in order to finish all the adjustments that needed to be made. At the inpatient gym it was accidentally thrown away by one of my old therapists. Not to name names but it starts with S and ends in ephanie! I mean come on, you really threw it out! (just kidding, love you tons!) So a new one was made, which took all of 20 minutes so no harm done.

AFO and my knee

If you haven't seen it already you can see the video of my kneecap moving due to my quads. This is significant because it means I can temporarily (about 5 seconds) hold much of my weight on that leg. We've been using this new found skill to walk without my full leg brace. It still needs lots of work but I'm starting to get the feel for this new mode of locomotion (it's been a year and a half, so it's new to me). I'll keep you posted on the status of this as it progresses.

Though I'm not going to be able to wear when I walk all the time, I've got a custom AFO on the way. I'll send pictures when it arrives, which could be a while.

Underwater AFO

My main therapist had an idea of combining the work I'd done with the AFO and the work I've done in the pool. We were able to take the AFO underwater because the AFO that I've been using is just a simple piece of plastic and velcro . Since the water supports much of my weight we have been able to focus on the work of individual muscles that need strengthening without worrying about the ankle dragging. This is the most stable I've felt ever!

Home Plan

Every time I go to Kennedy Krieger for boot camp I leave with a packet of stretches, exercises and recommendations. This program is what shapes my PT program from now on. It is my chief resource for everything PT as it focuses on my weakest areas. It focuses mostly on my left leg as well as strengthening of my core. I'll share bits and pieces as they become more relevant but its guidance will play a part in all of my recovery from this point on.


It was sad to leave again but I'm glad I won't have to keep that pace every single day. It was good to recharge my mental batteries with a boost of energy from therapists, family, and friends. I'm now armed with a new program and an reenergized will to succeed.

Boot Camp: Day 4-5

Boot camp continues. It's a lot of work and they really crack the whip, leaving me dead to the world once I get back to my bed. There are a few updates that are cool and I wanted to share with you.

Harness

The Therastride system, suspending you over a treadmill with the harness taking your weight is one strategy I've already talked about. A different method they've been trying with me is to have a harness that doesn't directly take any of my weight. Using the leg brace, I'm forced to walk without crutches or canes using the harness only in case of emergency. This harness is suspended over the floor with a series of movable track options it follows. I walk up and down, simulating as best I can walking without any assistive devices.



AFO

The Ankle Foot Orthosis is a device that braces the ankle but not the knee. This is the device I hope eventually to move to full time. While stabilizing the foot, I now cannot subconsciously cheat and use the ankle to brace my leg. I now have to rely on the knee to hold my weight, something my knee is not excited about at all. But it's coming along. It is a goal to work toward, a thing I'm always in need of.



So I'm being the guinea pig for multiple rehab walking strategies. We'll see what helps and what doesn't. But for now it just makes me physically exhausted.

Boot Camp: Day 2-3 - Days Full of Pep

Day 2
I had a doctor's appointment early Tuesday. In the questionnaire they had me fill out they posed this statement:

I am full of pep.

They had me rate it on a scale on how true this statement was for me. I've taken this survey before but every time I see this I started giggling very quietly to myself. That question that early in the morning is always hilarious.

These past two days haven't been full of too much pep. Yesterday my brace started out peppy but died after about 20 minutes. I'm retiring the new brace for the rest of the trip, until we can send it back to the company for repairs which should take about a week.

Yesterday I got onto the therastride again. This machine positions you over a treadmill with a weight supporting harness. Everything is controlled by a computer which tracks the weight you are supporting on your own, the distance walked, and your speed. The previous times I've used the therastride I'd need large amounts of help swinging my left leg through and keeping the leg straight. Now that I have some muscles at the hip I only have to have help keeping the left leg steady.





This is a rather arduous process that takes the work of several staff members. It is nice to be able to walk in an almost normal fashion on dry land again. But the coolest thing to happen was the muscle contractions of my left quads (thigh). Here is a video of the newly strong muscles at work:



I also got into the therapy pool for the first time on Tuesday. The water is my natural element so I flourish there. Kennedy Krieger has a pool with an adjustable floor height and underwater treadmill, complete with cameras built into the walls so you can see what's happening underwater.





Day 3
I am not a morning person at all and apparently my therapist really is. So this morning as I yawned, my body creaking and cracking, she was bouncing along full of energy. As the day wore on and I started waking up she got more tired. As she finally said "see, I'm finally getting tired" all I had to say was a resounding "HAH!"

Now we didn't get to walking with canes on the previous day because right before we were going to, the computerized leg brace died again. So on Wednesday we brought the old leg brace and decided to start with canes. We took a small field trip and walked down to the fish tank downstairs and the garden path just outside.

Apparently I made walking with two canes look too easy so once we returned to the PT gym my canes were taken away and I was given a quad cane instead. I've used a quad cane before with good results so I wasn't too worried. Still unsatisfied with how easy I made it look, my therapist asked me why I couldn't just use a single cane. I didn't have a good answer so I picked up one of my canes (notice the flames on the side) and this was the result:



Needless to say on both days, after three hours of physical therapy and one hour of pool therapy I was beat. At the end of the day I was definitely out of pep and ready to crash for the night.

Boot Camp: Day 1

Today was full of paperwork, evaluations, and tests. They haven't seen me in 5 months so they wanted to objectively access the progress of my recovery. Lucky me. They tested flexibility which has improved slightly in my right leg. My left ankle (the weaker leg) has tightened up, most likely due to the fact that it lays limp during my sleep. This causes the muscles to weaken and shorten, making it more difficult to use the foot when I walk. I'm really supposed to use a piece of equipment, a Multi Podus boot, which keeps my foot fixed in place during sleep. I've almost never used mine because it's bulky and uncomfortable, besides the fact that I roll around in my sleep. So my therapist suggested a lighter piece of equipment, made of fiberglass casting material (think of when you break your arm and they put you in a caste) combined with Velcro. They will be able to make it while I'm still in Baltimore so that I cans start using it as soon as possible. I'll keep you posted as this develops. With muscle strength tests I excelled. The muscles that were just waking up in January are now strong and muscles that were missing are now reappearing. My quads (thighs) are strong, my hamstrings are weak, and the calves are moving for the first time in a year and a half. The ankle remains stubbornly still. I had been excited to show everyone my new computerized leg brace but it's on the fritz. So I put on my old wire and cogs leg brace. And I kicked butt! The two major tests that are done are the 6 minute test and the Disabled Angry Bear Test (10 meter test). In the 6 minute test you see how far you can walk in 6 minutes. I doubled the distance I could walk in January. In the Disabled Angry Bear Test (how fast you could run if you were being chased by angry bear, with the bear having a disability of some kind) I shaved it down from 10 meters in 12 seconds to 8 seconds. So basically I'm squashing all my old records. After this we walked up two flights of stairs, something I learned the last time I was at boot camp. In my therapist's words "you make this look easy!" Forget about it, I've got that one covered. The coolest thing in my opinion was the response my legs had to be the electrical stimulation. Kennedy Krieger believes in the heavy use of electrical stimulation on disabled limbs; research has shown increased muscle and nerve growth when electrical stimulation is used along with a full PT program. There are two different systems that KKI uses, the Empi Stim Unit and Swiss Stim Unit. Swiss Stim is an electrical stimulation unit that varies the parameters of the electricity that is pumped to to the muscles; the hope is that somewhere on this range of wavelengths the muscles receive the signal they are waiting for and contract. A vary useful rehab tool, the company that made them unfortunately stopped production a few years ago. Therapists have used different stimulation units on me since last February. In all that time, the left leg has never responded, the right has always had huge muscle contractions from the beginning. Today we put the electric pads on my legs to try it out, to cross it off the list of things to try. Me and my therapist were both shocked when there were weak contractions with the Swiss Stim Unit. Trying the Empi Unit as well we proved that it was contracting and not just a fluke. Both my glute(butt) and hamstring showed weak shaky contractions, the work of inexperienced new muscle. If the increased movement in my legs didn't prove to me that my nerves are regrowing, this settle it. So a lot of promise. Two weeks to look forward to. We're going to work on integrating canes into my walking, figure out exercises, work on fixing any hitches to my gait pattern, and work in the pool on the underwater treadmill. I likely won't be writing a ton because I'm usually dead tired after these sessions but I will try and keep everyone in the loop as much as I can.

A Passing Moment

I sat on the back porch looking up at the sky. It had rained earlier, leaving drops dripping from the gutters and railings. The clouds had moved on leaving a ghost of a storm behind. In the distance the clouds covered the horizon. Every so often a brief spark of light shown, lighting hitting the earth so far away the thunder never reached our shore. All was silent. For a second the clouds parted leaving a bare patch of sky. Through that window to the heavens no stars shown, only the one winking light of a satellite as it danced its way across the darkness. It was there for only a second, moving in its steady slow march, flashing its unintelligible code to remind us that it was there. Then the clouds moved together again leaving only muddled night. As the clouds shifted and swirled, the moon shown through for a minute or two. Not the bright shining beacon it usually is, it hid behind the swirling clouds. Its usually bright yellow was muted and gray. For the briefest of moments it appeared orange, glowing as only the fickle moon can. It was if it too was tired and weighed down by some unspoken thoughts. And then the clouds rolled in again and there was darkness. The last of these passing lights was only a spark. A firefly made its way through the yard, passing quite close. As the insect moved fast, the flashing light became a streak. It went out, then shown again. You wouldn't have even known it was there except for the dashed lines of color it left in its wake. It imitated the electron, so fast and brief that you couldn't see where it was, only where it had been. It swayed back and forth, finding the rhythm and beat that only it could hear. This buzzing point of energy cut its path through the yard finally making its way to the bushes and out of sight. Then all was dark and quiet again.