Boot Camp Week 1

It's that time again! Every 6 months I return to Kennedy Krieger Institute to do physical therapy, known as BOOT CAMP! I go in for therapy for 3 hours a day, 5 days a week, for two weeks (with an added hour in the pool 3 times a week). This grueling but necessary addition to my PT program has helped me to improve as far as I have; they help me push the limits of what I can already do and get me to try new skills. In the end I leave a step ahead of when I arrive, ready to put my new skills to work.

You and I will never be this hardcore.

Day 1
Every time I come to Kennedy Krieger, the first day is filled with tests and evaluations. These give them a baseline of my strength and balance; it's not generally very exhausting (that comes later) but it lets them have numbers to compare when they're comparing my progress. I've been lucky that my numbers continue to improve, though over the years they have started to slow. The measures that continues to improve the most are standing balance and walking endurance.

One of the tests they always do is the 10 meter test, a test of how fast I can travel 10 meters. A long time ago my dad commented that it was how fast I could outrun a bear. I said that I didn't think I was fast enough to outrun a bear just yet. He qualified his original statement, saying it was a test to see how fast I could outrun a disabled angry bear. Since then we've called it the disabled angry bear test, a name that never fails to crack up the person timing the test.

I dare you to try thinking about outrunning a disabled bear without smiling.

Day 2
The second day we really got down to work. We started off the day with various exercises for my left left (the weaker leg). After this we went off and used the Gait Rite, one of the few pieces of equipment that I hadn't at least tried before. The Gait Rite measures step length, foot placement, and the relative amount of weight you put on either foot to get an idea of how to improve your walking pattern.

The computer records a picture of your steps as well as all the associated data.

I walked over the sensor using my cane and again without my cane. The data showed that my steps were more even when I walked without a cane. Though this is exciting news, meaning that I am ready to slowly start weaning off the cane, it's hard to let my cane go. I've walked using so many assistive devices that the idea of walking without one is a little scary. It's as hard to let go as a security blanket.

Day 3

My therapists love to try different pieces of equipment out on me. I've been around for 3 years so I'd thought I'd seen most of them but I was surprised again. We worked out using the Biodex System, a machine that allows you to isolate every conceivable muscle in your leg, hip, and trunk. It has a dozen or more attachments (that I saw) and we worked as many as we could before I was exhausted.

The data generated from this machine is accurate enough to use in peer reviewed studies.

I always end up working hard but that's not to say there isn't some fun mixed into the day. There is a Wii used for different exercises, though it's largely there to distract the kids who come to KKI while they do therapy. Along with Wii Sports and Wii Fit, I'm regularly roped into a dance battle using the game Just Dance.

Nothing screams irony more than a group of disabled people rocking out to Moves Like Jaggar. 

Day 4

The pool at KKI is one of the best things about coming here. The pool has a floor that raises and lowers, cameras in the sides so you can watch your legs as you walk, and an underwater treadmill.

They also have more aquatic therapy equipment than I knew existed.

This pool session was unique in that it was the first time I was able to walk without any assistance on the underwater treadmill. I can walk without a cane on land with relative ease but moving underwater with at least a rail to lean on is always challenging. The therapist I worked with made the same observation as my therapist on land, that I walked more evenly when I didn't have something to lean on. 

All this week I'd seen people with the same T-shirts, from 3E Love. I've followed them on facebook for a while but this trip has made me determined to go and get myself a hoodie with this design. How can you not love these?

You can find different designs, different styles, different colors, T-shirts, hoodies, decals, jewelry, temporary tattoos... the list goes on.

It's the end of the week, I'm tired and I'm sore but there's already some progress made. I still have another week to go but this week has reminded me what I'm working towards. I am grateful to everyone at KKI who works with me, kicking my butt all week. I've worked hard but they've worked just as hard on planning my program and molding it based on what I can accomplish. KKI rocks!

3-year Anniversary of My Accident

I haven't written anything on this blog in a while but the anniversary of my car accident is a date I couldn't ignore.

If you happen to be reading this blog for the first time, read this post first, explaining my story.
(If anyone wants to see how things have changed you can check out my First Post After The Accident, Year 1, and Year 2)

This year has been one of continuing progress. I've had 2 different leg braces, ending the year using the Allard Toe-OFF AFO, an ankle brace that makes use of carbon fiber to make it durable and light. This is my smallest and lightest brace yet, compensating for the lack of ankle movement in my left leg.

Some of my old braces took about 5 minutes or more to get on. This takes about a minute.

I've still had my share of medical issues. I've had multiple surgeries for an ongoing infection that's gotten all the way down to the metal in my back. Once metal hardware is infected (especially necessary hardware that you can't remove) it's very hard to get rid of. Precautions have been taken and every measure is being taken to try and eradicate the bug in my back.

Read my 5 Insights From the ER

I finished another semester, leaving me only one more until I graduate with my bachelor's degree in biology. I'm already applying to graduate schools for next fall, where I'll study bioinformatics (a combination biology and computer programming).

I've been continuing to explore my new found passion for painting. This year I painted my Christmas gifts for people, coming up with a few really great ones. Some are better than others but I had fun painting each and every one of them.

 Wookie The Chew

 The tabernacle of a church, painted for my mother.

 The Four Seasons, for Q. Try looking at it upside-down.

 The final painting turned out really well, though this picture didn't do it justice.

The original.

 The Nightmare Before Christmas, for Kayla.

 Batman Celtic Knot, for Philip.

The Sun Over Lake Michigan, for my aunt.

Minas Tirith from Lord of the Rings, for my dad.

My friend Cat asked for a picture of me and I painted her this. 

There are still a couple of others in the mail that I won't post. Needless to say I've been spending countless hours working on these. The best part is that from all my brainstorming sessions of what to paint for people, I have a giant stack of painting ideas and sketches that I can still use.

Lastly I want to thank everyone who's helped me along this past year. I've worked hard but no one gets anywhere without some from help of those around them (family or friends). I first want to thank my Mom and Dad, who've been there to kick my butt over the years when I'd already given up. Dad, thank you for being there for advice, counsel, and a fresh pair of eyes. Mom, you've been there since since the beginning and have carried me kicking and screaming down the road to recovery; I love you both more than words can convey. To my siblings, thanks for being there to dish out the family gossip, to commiserate, to give me a patient ear when I've needed it, and helping to keep my life in perspective. Thanks Philip, a true friend through anything. Thanks Kelley, my amazing faghag, who helped keep me sane no matter what was going on in my life. Thanks Tony, for reminding me to relax and enjoy life and not to take things so seriously. Thanks Kayla and Eli, the cutest family I know, for reminding me what's important in life. Thanks all the staff of Coastal Rehab (though especially Mindy and Lynn) for tireless working to keep me improving. Thanks to all the staff up at the Kennedy Kreiger Institute and The International Center for Spinal Cord Injury (Kristin, Meredith, Brooke, Stephanie, Marjorie, and so many more) who've been the driving force in my rehab since I was first injured. Thanks to all the doctors (there's dozens), nurses (hundreds), and other staff  who've helped me with my ever climbing number of medical visits. Thank you to the orthotists who've worked tirelessly to make sure I have a working leg brace, without which I wouldn't be walking at all. Thank you to all the people who've read my blog, followed me on facebook, tumblr, etc; though this may be just a way to pass time for you, the support I've received from all of you has kept me going for all these years.

I'm currently up in Baltimore for Boot Camp again, so expect updates to follow in the next few days.

Title TBD

I've been absent from my blog lately, a hiatus caused mostly by school work.
Here's what's new:

ToeOFF AFO
I've been walking more and more using the Allard ToeOFF AFO. It's been working great. I was finally able to ramp up the amount of time I spend wearing it so now I can wear it all day (with breaks to give my skin a break).

My leg brace with extra padding in the background.

I love that this brace gives me the ability to raid my closet for shoes. Now that I'm not wearing my bulkier brace I fit into some of my old shoes, some of which I haven't worn since before the accident. 

It's like my feet are going back in time to before the accident.

 

Wound VAC
For those of you who remember this little bad boy right here, I went through a stint on the Wound VAC. It sucked out all the unwanted buildup in my back in order to help fight the infection I was dealing. It's healed up (finally!) but I still have to be careful.

WoundVAC with complementary awkward man-bag.

Once it's had a few more days to heal I can...

Return to the Water!!!
 

It's difficult to convey how extremely excited and overjoyed at this I am!

I've been exiled from the water since last year, when I had to wait for my surgery scars to completely heal. Every few weeks I'd get excited that I might get to go back but to no avail. I'm not making this whole post all about that or it won't happen.

School
School is kicking my butt as we move toward another round of finals. I've got to get through the fall and the spring and I'll have my bachelors in biology. After I graduate I'm going to be looking for a career in bioinformatics. This fascinating field is all about paring microbiology and computer programming. I never expected to love computer programming but I seem to have a real knack for it. I'll soon be looking at grad schools for next fall.

Painting 
I've been filling my spare time with painting, an activity I picked up recently. I currently have several underway. Here are a few fun one's that I've done recently:

Who-who!

 Bird of Paradise

 

 Long shadows are long.

Not actually mine. This picture is from my Dr.'s office in Albany this summer. I will have to paint my own version of this at some point.
 

My take on the Mutts comic strip.

The turtle I painted onto the stopper of my cane.

School sucks + some awesome paintings

I'm in the heart of my senior year but I'm nearing the end. I'm graduating next spring with a bachelors in biology. In the meantime I'm studying for finals which has put a crimp in my time to write.

In the meantime here's some paintings that I painted.

Bird of Paradise flower.

These I did at Serenity Studio Arts

I have a real post in the works here soon.
The Turtle

How Do You Find Balance?

How do people find balance in their lives? I've always had a hard time balancing things in my life. I tend to go to extremes whenever I have a choice in front of me and it comes back to bite me EVERY TIME! You think I'd have learned by. There are the things I've always struggled with (homework vs. leisure time, clean vs. orderly, health food vs. junk food) but I've got a few that have come to the forefront lately.

1) Slides vs. Hitchhiking
A project I've been working on for my parents is to scan in their old projector slides. My dad is a photobug and has slides going back to when he was a kid (though most are from me and my siblings lifetimes). Realizing that the film was degrading my dad got an attachment for our scanner so that we could scan them into the computer. Only problem is that it only scans in four slides at a time.

It takes about 2-3 hours to scan in one carousel of slides. Most boring job I've ever had.

This extremely tedious task was offered to me, in exchange for a small amount of gas money. As I'm not otherwise employed this is one of my few opportunities for real work, so I dived right into it. For obvious reasons I'd rather drive myself, rather than say hitchhiking. I started doing 2-3 reels a day.

If I ever do end up hitchhiking I won't forget my towel.

The problem with this is the longer I did this the more I felt increased lower back pain. My back pain had more or less vanished since I gave up my wheelchair at the beginning of this year. If I push myself too hard scanning slides, I end up slightly less broke but in pain. I've been trying to moderate myself, only doing one (maybe one and a half) a day; gas is a good motivator but back pain is a good deterrent. Finding balance is the goal but it's hard not to do a ton or give up entirely. It's a process...

2) Old Brace vs. New Brace
I'm now in the middle of two different braces, both AFOs. The Allard ToeOFF is a carbon fiber brace with enough flexibility to let me bend my leg a little without falling over.

Insights From Inside the ER

So this past week was eventful. Last weekend another wonderful bubble from the infection in my back popped up. I got sent to the ER, in Baltimore... again. I whiled the 14 hours in the ER, what with some time on my hands, I discovered a few simple truths of Hospitals.  

Spend enough time in the ER and you too will unlock the secrets to the universe.

The Turtle's 5 Universal Truths About Hospitals 

1) 15 hours of fasting will turn a tortilla, sub-par ham, and American cheese into the most delicious meal of your life. 

The possibility of surgery was looming. I wasn't allowed any food or drink because of the vast chance that surgery would be done that afternoon. Fortunately we had eaten at a mom and pop diner where I got a big breakfast.

It's getting around 10:45 pm and I'm getting really hungry. So I call in the nurse and ask her if, since there was little to no chance of my having surgery that evening if I could eat. She disappeared, saying that she would ask. Around 11:45 pm I gave up hope and there she was with a cold ham and cheese wrap. Kings don't eat this good.

To my brain, it was kind of like this.

2) If given headphones during a scan and the music stops... STOP THE SCAN!

They took me back frequently for MRI's, CT's, X-Rays... the list goes on. During the MRI, a very loud and noisy process, they frequently give you earplugs or music to listen to through headphones. I'm not usually claustrophobic but the first time I went through one of those just about gave me a heart attack.The music allows me to calm down and go off somewhere else.

They stopped the music temporarily while they loaded contrast into my IV. But when they went to stick me back in the machine they forgot to turn the music back on. I tried yelling and getting their attention without moving too much; I was afraid to mess up the scans.

I should have stopped the scan early on to point out the music situation. But I sat back and tried to grin and bear it. My heart was racing inside my chest the entire time but I made it through. It was only after pulling me from the machine that the tech noticed "Huh! I forgot to turn the music back on..." YA THINK!!!!!

The music is usually better when it's switched on!!!

3) Lies are often more dependable than the truth.

“It was a lie, of course, that it wouldn't hurt a bit. But since adults always said that when it was going to hurt, he could count on that statement as an accurate prediction of the future. Sometimes lies were more dependable than the truth.” 

–Ender's thoughts

Ender's Game by Orson Scott Card

Bandages come off, nurses or doctor comes in, checks it out, bandages back on. Repeat. Tape on and off... all night long. My favorite line "This should only hurt a little bit."

4) My poor braincells. DAMN YOU FAMILY FEUD!

The TV was on to Family Feud. If any of you know Family Feud, it's been on so long that it's had 6 hosts since 1976. There are decades worth of the most obscure topics that you've ever seen. I felt I was both learning and killing brain cells at the same time. At least it killed time.

5) "You smell clean... like... sanitary!"

The response from my awesome friend when I got back. Though I laughed it off, this reminded me of all the chemical smells of the hospital. All the disease, all the meticulous cleanliness, all the life, and all the death... all the cleaning products. Though you can leave the hospital the smells and memories never leave you.

Hospital Rooms have that great ability to make you feel super clean and super creeped out at the same time.

Why I Need A New Brace and What Happened in Colorado

When I walk I use an AFO, or Ankle Foot Orthosis. (A fancy name for an ankle brace) This little shell of plastic ends up doing more than its share of the work when I walk. I'll lean on the front to hold myself up, take full advantage of the small spring in my step that it gives me, and unintentionally bang it against nearly every object.

So True! Meanies!

While my old AFO has been good to me, it's time to move on to a new brace. I always feel better if I have a goal, something to work towards. And for the last year or so that goal has been learning to master my current AFO. Now that I've pretty much got that down, I'm finding myself getting comfortable again... and therein lies the trap! Once I'm comfortable I don't work as hard and I stop making progress, at least until I pick myself up and start again. This happened with my wheelchair, my KAFO, and now this. It's time to push on before I start sliding backwards.

My new brace, the ToeOFF. It's lightweight, it's cool looking, and it's something new to work on. What's not to love?

The new brace is called the Toeoff. It's got a sleek design, with only one very strong carbon fiber cable on the side. It gives me support but far less than I'm used to. The one feature that's vastly improved over my previous brace is that it has increased spring in the ankle, which propels your body forward. It's still hard to use and it will take a lot of practice but I'm confident that just like all the others I'm going to master this too. And I can guarantee that once I do my question will be, “What's next?”