In addition to being more busy lately, and thus more tired, there hasn’t been anything remarkable to talk about in my progress.  Things continue to move forward, albeit slowly.  I suppose that’s the real story at this point – no news is good news.

As I mentioned last time, I’ve started to take steps on the parallel bars. Since the last post, those steps have gotten a lot better.  The left knee extensor spasm/tightness that made it hard for me to bend and advance my left leg has gotten a lot better, and I’m able to take steps that look more like normal steps.  A big part of this has come because of the consistently increasing strength in the right quadriceps.  What I was once very worried would never come back is now making continued, marked progress.  It’s still not as strong as the left leg, but I no longer need Melissa to block it off from collapsing.  As a result, I can put more of my body weight through the right leg when trying to step with the left leg.  This means I can take the weight off my left leg, thus making it easier to bend at the knee and advance normally.  Funny how that works.

So without further ado, a photo from a recent session on the bars:

You can see the left leg is locked straight at the knee (Melissa’s knee is in front of it, although not touching it, just in case I am unable to keep my leg straight), and the right leg is bent at the knee and advancing from the hip.  Note the foot off the ground.  :)  Ritche, one of the guys there, is holding on to my belt just in case I were to fall backwards – he’s not providing any assistance.

At the suggestion of one of my other therapists, we’ve tried something new lately in addition to the bars – braces.  And no, not the dental kind.  One on each leg, they begin just below the pelvis and continue down to the feet where they force the foot to stay in neutral (at a ninety degree angle with the leg).  They inherently keep the knee from bending by providing rigidity and stability, and serve to help me focus on working on movement from the hips and pelvis.  Reciprocal movement in the region, which should help overall walking form.

I worked with the braces during three separate sessions on the parallel bars, increasingly getting better movement from the hips.  Then we tried on a walker.  I managed to get about ten to fifteen feet before having to rest, but that was with no assistance at all.  Unfortunately, being 6′ 4″ means they don’t have a walker tall enough for me, and the result is that more force goes through my arms than is supposed to.  And they get tired as a result.  One would think a top-notch place like Mount Sinai would have all of that on hand, but apparently not.  They’ve already got one on the way for me to use, though.

After five sessions with the braces, I returned to the bars without them last Thursday.  Although my hips were stronger, unfortunately it seemed to lead to a bit of a setback.  Melissa was out for two weeks, so I only worked with my other therapist with the braces.  Since my legs hadn’t been forced to support my bodyweight on the bars for those weeks, when I got back on the bars they were not up to par with where they’d been. The spasms have been worse in the hamstrings, causing my leg to bend back quickly at the knee.  Several times, I’ve wound up with both legs spasming and my body being held up entirely by my arms – both legs completely off the ground.

It’s been frustrating, but in the two sessions since then, things are getting back towards normal.  So while my legs are still slightly spastic when I stand and try to straighten them completely, they’re getting closer to where they were before.  And my hip and knee movements are more fluid as a result of the braces and the walker.  I’m confident that in the end, the braces will help.  Going forward, it looks like I’ll be walking on the bars twice a week without the braces, and once a week on a walker with the braces.  As soon as they get a walker tall enough for me, that is.  I think the balance of the two activities, coupled with continued walking and exercises in the pool, will prove highly beneficial in the end.

So here’s another picture, see if you can guess what it is:

Can you tell?

It’s the official practice/training facility of the New York Rangers, in Tarrytown, NY.  A photo I took recently with my phone.  Awesome.  I’ve been a Rangers fan since my dad first took me to a game at MSG when I was a kid, and that winter I started playing hockey myself.  I played through high school, and continued to be a big fan of the team and the sport.

So why am I posting this now?  Well, being such a fan, it was incredible to spend time where they practice, a place that is typically off-limits to the public.  But why was I there?  Well, I decided to start playing hockey again.  Sled hockey (they call it sledge hockey elsewhere).  It’s a version of the sport that allows players with any type of disability that prevents them from playing regular hockey.  Same rules as regular hockey, and it’s full contact.  You sit on a sled that has a skate blade underneath it (two blades for a little more stability until you’re comfortable enough to go down to one), and have one short stick in each hand.  At the end of each stick is a small pick that you use to propel yourself forward on the ice.

The team I joined happens to be called the Rangers, and we practice… at the official Rangers facility in Tarrytown.  :) Awesome.

Check out a video of the US paralympic team:

Pretty cool, huh?  We had our first practice of the season last week, and I had a BLAST.  Just like the guy says in the video, as soon as I went into the rink and smelled that ice rink smell, I was hooked all over again.  It’s somewhat like learning to skate all over again, because the balance is a bit different than on regular skates.  And it was only my first time out, so by the time I was done my shoulders were EXHAUSTED and my core was weak for days afterward.  Some of these guys have been playing for more than ten years and are pretty amazing on these sleds, so I’m not sure how much I’ll catch up to them anytime soon.  But it was so much fun.  I think I did pretty well for my first time on a sled, and I’m definitely going to be back for a lot more.  I’m hooked, and hopefully I’ll find a place to keep playing when I’m in Cleveland next year.

So yeah.  Let’s go Rangers!

I should preface this by also adding that this past Monday at Mount Sinai, I tried something new I’ve been wanting to for a while.  We started the session by getting into the standing frame, which I’d been wanting to do the past few sessions.  A standing frame is a device that basically helps you stand without the risk of falling and hurting yourself.  First, you sit on a big padded seat, which is connected to the backrest by a hinge.  This allows the two to open up relative to each other.  There is also a big padded block that gets adjusted so it is tight (not too tight!) against the knees.  What this does, effectively, is lock your knees in place so they can’t move at all.  Additionally, the feet go into contoured footrests that prevent them from sliding.

Then a hydraulic handle is pumped, and it lifts the seat upward while opening up the angle with the backrest.  The net effect is that the device literally stands the user upright.  There is also a pad about chest-height that keeps the torso from flopping over forwards.  This is especially necessary for those individuals that have compromised trunk strength and cannot keep their upper body upright on their own, due to things like, oh, I don’t know, high-level spinal cord injury.  But I don’t know anyone like that.  ;)

Some images will probably help clarify it, so I swiped these from a vendor’s site to show the sitting and standing orientation:

My therapist adjusted it so I was almost upright, but allowed some room to attempt to contract my muscles a bit.  I was able to start getting some good contractions out of my quads.  Additionally, I was able to move my pelvis forward (which is quite important for walking) and get my butt off the padding on the frame a bit.  This was even new to her since I began working with her, which was only roughly a month ago.  I was feeling particularly energized and strong, and mentioned to her that I wanted to try getting on the parallel bars sometime soon.  No more than a few seconds later, we had both agreed to forgo the standing frame and head over to the bars.

I’d already done a fair amount of standing in the kitchen of my apartment, but in that position my arms were in front of my body and it is nearly impossible to get my body fully straight.  And I did manage to stand on a walker one day in therapy, but that’s a challenge in and of itself.  Since I have to pull on the walker a bit for support while getting upright, it takes balancing and assistance from two people to help me stand up and keep my knees supported so they don’t buckle under me.  But I do enjoy both.

I wheeled into the bars, we adjusted them for my height, and my therapist and a helper got ready.  I managed to pull myself upright fairly easily, and I was surprised at the ease with which I was standing.  On the first attempt, Melissa (my therapist) was blocking both of my knees with her legs since we didn’t know whether or not my muscles would cooperate.  I stood up for a minute or two (maybe longer, I wasn’t paying close attention), then sat down to rest.  On the second try, Melissa was able to move her leg completely off my left knee as the muscles were contracting enough for me to put my body weight into the leg without it buckling. I stood up six or seven times, each for several minutes, and at a few points even took my left hand off the bar for five to ten seconds.

I cannot begin to express how it felt to be upright, on parallel bars, standing with minimal assistance.  It was at this point that I also realized how much work the muscles in my right leg were doing.  When I spoke to Melissa about it after, she expressed surprise at how much less support she had to provide to the right knee than expected.  I’ve been worried about the right quadriceps for a while, and over the past couple weeks I’ve started to notice that I’m able to contract them a bit.  Nowhere near as much as the left leg, and nowhere near normal, but still, after many months of waiting, the muscles are starting to contract and my worry is starting to subside.

It was while I was standing that I realized I really, truly believe I will walk again.  It’s not just a maybe or a hopefully, I can do this.  Doctors have told me it’s possible, as have therapists and people around me, and although I always wanted to believe it, a part of me always held on to the “what if I don’t?” idea.  But while I was up on those parallel bars, shifting weight back and forth between both legs, and feeling the muscles firing to help me stand, it really hit me.  I can do this.  It’s not going to be easy, and it’s going to take a long time, but I can do this.  And it felt amazing.

Back to today.  We got to the YMCA and as we got ready to get into the pool, the lifeguard realized that the chairlift wasn’t working.  I had never noticed these things before the membership coordinator at the YMCA pointed it out to me when I was first signing up, but they help people get in and out of the pool who are unable to use the steps or ladder.  It’s a seat attached to a lift, so I can just transfer from my wheelchair into the seat, then the lifeguard flips a lever and the seat rotates over the pool and slowly lowers me in.  The inverse makes getting out a snap.  But today, it wouldn’t be so easy.

Getting in wouldn’t be the problem.  I can certainly just flop over into the pool easily.  Or propel my wheelchair forward REALLY fast, then lock the brakes up right in front of the pool so I fly out.  (No, that’s not what I did ).  Getting out would be much harder, though.  Rather than give up, the lifeguard felt they could get me out without too much trouble.  With two big lifeguards and a therapist who’s strong herself, I figured it wouldn’t be too big a deal, so I transferred from the seat to the floor and then slid into the pool.  No harm, no foul.

Right away, I put my arms on the edge of the pool and stood up almost effortlessly.  The last time we were in the pool, I was able to stand up, but it certainly took some work.  I was surprised at the ease with which I got up this time.  The legs spasmed a bit, as they always do when I stand up, but after putting some weight into them they calmed down and started to listen to me.  The right needed to be blocked from buckling, but I did start to get weight into it and it started to contract.

After standing numerous times, it was time to take some steps.  With my left hand on the edge of the pool and my right arm firmly on my therapist’s shoulders, I pulled myself upright and steadied my body.  With my weight in the left leg, I lifted the right leg a bit and swung it forward from the hip flexors.  Wow, that didn’t work that well the last time. I still needed help blocking the knee on the right leg, but I was able to get weight into it and rotate my pelvis a bit while I swung the left leg forward to take a step.  I was able to take three steps with each leg before needing to rest, but the steps were a lot more solid than the previous time and they looked a lot more like normal steps.  Granted I couldn’t do that even in the pool without the support, especially on the right leg, but it’s progress.  It’s significant progress, seeing as it’s barely been three months since I first wiggled that toe.

Sometimes I surprise myself.  I’ve never been a fan of patience.  When there is something I really want to learn or do, I put all my effort into getting there.  And often, it consumes a good chunk of my life.  But this process has taught me patience.  Yes, I want to walk and stand right now.  But I’m ok with how much time this is going to take.  As I continue to make progress in slow, steady bits, I’m happy.  It may take me two or three years before I can walk on my own, and it may take another year after that before I can completely ditch the wheelchair.  But as long as I’m moving forward toward that goal, I am completely fine with that.

That may seem  to be troubling, but it’s not as bad as it sounds.  Dr. Stein believes it was caused by either over-stretching or a particular exercise I may have been doing on the mat.  This makes sense, as after the initial swelling occurred I felt that the stretching I was doing may have impacted the subsequent overnight increased swelling.  The bleeding was compounded by my being on Coumadin as a preventative measure for DVT.  Essentially, a small tear in the area of the quadriceps resulted in a lot of blood slowly leaking into my leg.  This was supported by a concomitant decrease in hemoglobin and hematocrit levels.  Basically, blood tests confirmed that there had been some leakage of blood internally.

Since then, I’ve been taking it easy in therapy and with the stretching.  I was taken off  Coumadin temporarily while we waited to be sure the blood had clotted successfully – it has.  My leg is still quite swollen, however it has started to become less firm (for lack of a better way to describe it).  Hopefully as it has gotten softer and feels more like a normal leg, it will start to shrink as well.  Not too much as of yet, but my body should slowly reabsorb the blood over the next couple weeks.

In other news, I finally got the good TiLite wheelchair back last Wednesday night.  The manufacturer had managed to finally repair/replace the footplate that I managed to break two weeks prior.  They said they’d never seen that type of damage before and were almost in awe.  Hey, I always have to do something nobody’s done before, right?

And of course, what’s the first thing I did after getting back into a good chair but start popping wheelies again.  I haven’t missed a beat, and my wheelies are even more stable now than they used to be.  I can turn in a wheelie much easier than before, and I’m now working on consistently going off curbs in a wheelie.  It sounds risky, but it’s actually safer than the alternatives.  Learning how to control a wheelie and use it to your advantage is one of the best things that can be done for overall safety.  But it does have to be done in a controlled environment, because it’s still something that takes care and caution to learn.  And I’m still a complete and utter beginner who realizes how careful they need to be.  But damn, they’re fun.

It’s amazing how much being in a better chair impacts one’s sense of independence.  The chair is so much more comfortable.  And more importantly, it’s much easier to propel myself around and to navigate obstacles.  I feel more up to going out and about, and to challenging myself.  This alone makes me more apt to socially integrating myself outside the hospital setting.

On Friday night, I went out to dinner with my girlfriend at Hanratty’s, a nearby restaurant that we tend to frequent a lot.  It’s close, the food is quite good, and they’re very friendly to wheelchair patrons.  They even have a little ramp they bring out in order to make it easy to get past the curb they have at their door.   The entire trip out was without incident, and it felt really good to be outside of the hospital in a normal setting again.

There are still a few issues to resolve before I’ll be ready to be discharged, but the date is approaching.  My tentative release is re-evaluated every week, and the next evaluation will be tomorrow.  So tomorrow I should have a better idea of when I might be out of here.  Granted, based on history, it could be “a week or two” and then again get moved back.  Which would be good, because I’m not quite ready to leave yet.  But I’m getting closer and closer to being ready every day.

I was put on Etidronate to attempt to slow or halt the HO, and then several weeks later I would be X-rayed to see if the formation had continued to the point where it was visible on a regular X-ray.  The hope would be that nothing would show up on the X-ray – this would suggest that progression of the HO had been retarded.  But the expectation was that something would be visible on the X-ray.

Well fortunately for me, nothing showed up.  At all.  Dr. Stein seemed encouraged, and indicated another set of X-rays would be taken in another several weeks.  Those X-rays were taken last week, and again nothing appeared.  I was taken off the Etidronate last week (which is good, since it was irritating my esophagus), and Dr. Stein has indicated he believes the initial bone scan was a false positive.  Yes!!  He wants to do another set of X-rays just before I leave, for precautionary measures, but he again seems confident that things are in the clear.  Which is good, since I really didn’t want my hips to form a ton of bone were they shouldn’t.  It would make walking quite hard in the future.

Today while sitting in the Guggenheim Atrium (the Times seems to like it) chatting with a few other SCI patients, I saw the derm resident from Friday’s incident walk by.  I think she saw me, as she looked over several times.  Now, I doubt she realized they never came back to explain their suspicions.  But I was SO tempted to chase her down and ask why they never returned, why they never explained what they suspected, why they were putting me on the specific meds they did, or why they did not show proper respect to a patient.

But I decided to wait until I find the attending.  Yelling at a resident is nothing special, but getting to point out a mistake made by an attending is something that I won’t be able to do for a decade come the start of medical school.  So why not enjoy the fun while I can? 

I was watching a repeat of House, M.D. tonight and I noticed one of the hospital beds.  It was the same type of bed as they have at Mount Sinai, by Hill-Rom.  The odd part was, I saw it and my thoughts were, “that’s the same kind of bed I’ve lived in for two months.”  It made me realize how much all the parts of hospital life have crept into what is accepted as “daily life” for me at this point.  Leaving is going to be very weird.

I hope that once I’m out, I don’t constantly notice random things and have them remind me of my time in rehab.  But I am fairly certain it will happen for a while.

I was picked on to speak first by the psychologist running the group because “you’re such a smarty pants.”  I told the group that the first several weeks post-injury, I was still pretty much in shock.  The reality of it all certainly hadn’t set in (I still don’t think it all has – it will take a while for it to set in, and part of that will come with dealing with the real world) and even after a few weeks, although I started to realize how different things would be, I still wasn’t happy about things.

I shared that I look to people who come back as out-patients, those who have been in a wheelchair for a long time around here and those I know of elsewhere who’ve been in a chair for a long time.  They all say it took years before they fully came to terms with what happened.  Regardless of whether or not I walk again, I know it will take years for it to all sink in.  Apparently that’s something most people don’t realize after only six weeks.  A lot of that realization for me comes from the program here and the people it puts you in touch with.  Those who’ve lived with this for longer.

We bounced around the room going from out-patient to in-patient to out-patient and so forth.  Then one of the newer in-patients spoke.  His injury was eight weeks ago (mine six), but he’s only been here for two weeks or so.  He said to the entire group that his therapy is at the same time as mine, and so he always sees me in the gym.

“I watch Chris working and pushing himself, and I see the progress he’s making.  He’s my inspiration.  Watching him make such progress inspires me to work harder and push myself so that I too can get to where he’s gotten.”

Wow.  I was absolutely floored by the comments and honestly didn’t know how to react right away.  While I said thank you, it wasn’t enough.  Later in the gym during therapy, we saw each other working out and I waved hi at him and he told his therapist “there’s my inspiration!”  I thanked him again for his kind words and told him how much it meant to me to hear that and how touching it was.  We both encouraged each other to keep working as hard as we have been, and that’s how we can move forward.  Such a kind person, I will definitely be getting to know a new friend better before leaving.

Later in the day, in wheelchair mobility, I was giving the therapist a hard time about the setup and telling him it was too weak and non-challenging.  So he grabbed several ramps and curbs (to simulate how to get around on city streets) and setup a course that involved going up and down two inclines, going up a ramp to a four-inch curb drop to the ground, and then popping up a two-inch curb.  He told the others to stop before the four-inch drop, turn around and back down.  Then he told me to wheelie off it instead.

I rolled past the first up and down ramps with no problem and got up to the edge of the four-inch curb.  He had a strap attached to my chair to be sure I wouldn’t fall.  I popped up into a wheelie near the curb, slowly moved forward and then pushed right off the curb landing on my back two wheels and letting my front casters come down the ground.  It was definitely a LOT smoother than I thought it would be.  I didn’t have to worry about moving my weight forward or backward in the wheelie, I just maintained my existing balance and went right off the edge.  Then popped up over the two-inch curb and used momentum to roll right up onto it with no effort.

On the way back, I wheelied down off the two-inch curb without a problem, then popped my front wheels up the four-inch curb and had to work to push the back wheels up, popped down the ramp, then over the last incline/decline ramp.

All-in-all, it was a heck of a lot of fun.  Wheelies are incredibly fun, and they make some things much safer and easier – if one is careful and follows the right safety precautions.  Don’t try this stuff at home without a properly trained therapist to catch you before you crack your skull open.