Scattered Updates

So much going on, and I'm feeling a little overwhelmed.

I haven't published anything for a few weeks, but not because I haven't been writing. Several posts are in varying stages of completeness, but something always seems to usurp my attention, demanding to take precedence, and I'm off to write about that topic -- determined, of course, to resume the abandoned post, but usually return to find the material to have become outdated in the interim. It's a vicious cycle.

So, I've decided to abandon form and structure and fire off a rather superficial list of all that has been keeping me up at night.

My last day of physical therapy was Friday, January 30 (though I missed that day due to van crappery so, technically, it was Tuesday, February 3).  The idea of stopping PT at KKI and beginning my home program has me rather despondent.  Being very much a creature of habit, it's unsettling when large parts of my day are removed.

My course of treatment for PT had been extended three times because I was doing so well.  First, I was due to end PT after eight weeks, on October 23, but I was doing so well and making so much progress that the date was extended to December 5, then again to January 30.  As Cara told me when I began therapy in July, "No one stays in therapy forever."  Still, I can't help but feel as if I've failed somehow -- failed to make progress significant enough to warrant another extension.  I feel as if I have disappointed -- likely because I, myself, am disappointed.

Mostly, I will miss working with Cara.  In addition to being the consummate therapist -- always encouraging, understanding, and full of great advice -- she has helped me achieve not only impossible improvements in my physical ability, but also a better understanding of myself and my disability.  I'd say she's as empathetic as anyone could be without actually being in a chair (a distinction I'm willing to grant very few people -- so far, only Rich has qualified).  I truly enjoy her company, and am lucky to have had her as a therapist when I embarked on this endeavor -- I am certain I would not have seen this degree of success without her.  Plus, she gets my nerdy, wry, snarky sense of humor and bravely fields the deluge of questions I come armed with to every therapy session -- who could ask for more?

My OT has been extended, and will continue through February 28.  I'm relieved I will still have the opportunity to work on reviving arm function with Kristin and Mike, and use the FES biking equipment before therapy.

I had another reevaluation with Dr. Becker on February 3, but I'm afraid it didn't go as well as I expected.  I'm certain my ASIA score will be lower on the pin-prick segment, though I'm not sure why.

My spasticity has gotten completely out of control, and it's become an impedance on my daily life. I'm causing damage to myself and my surroundings because my left arm becomes uncontrollable and hits my hand drive, so I run into things but can't stop myself.  It's very frustrating. We've tried switching medications (to Zanaflex), and upping the dose of the medication (Baclofen) that I'm currently on, all to no avail. The increase in the strength of my spasticity could be attributed to stronger muscles from the work I've been doing in therapy, but Dr. Becker suspects a spinal cyst could be the cause.  An MRI will determine whether that is indeed the case.  If it's not, I'm afraid I'll be relegated to a more aggressive method of addressing the spasticity issue than oral Baclofen.

After a DEXA scan, I've been diagnosed with osteoporosis.  It's common amongst SCIs, and thus expected I'd have it, but that doesn't make it suck any less.  Medication and continued therapeutic activity won't return my bones to proper density, but should help improve the density and prevent fractures.

In other news, I've finally gotten a replacement for my 1991 Ford van -- a comparably small minivan that is just great!  It's novel to have a vehicle with, among other things, a working dashboard clock.

And, finally, my apartment is ready!  I move in on Thursday, February 12.  Yay!

There's a brief run-down of all that which has been occupying my time and my mind.  These topics will all be revisited in greater depth in forthcoming posts.


* In fact, as I was typing this, I had a bad spasm and knocked over my desk, for the 11th time this week.

Ebb and flow

I've recently encountered my first therapy-related disappointment. I knew it would happen eventually. It was inevitable.

It was also self-induced – that is to say, I set myself up for it (albeit unintentionally).

It all began about three weeks ago (Tuesday, December 12), when I demonstrated my new-found biceps visibility for Mike (OT [he prefers the pronunciation "odie"]). I described how I'd been working on the muscle, flexing it repeatedly, trying to make it stronger.

Mike presented me with a challenge: Choose one of the muscles that I'd sensed returning, and work on it every day. The muscles in my right arm, and in my left forearm, though perceptible to me, are not 'usable' at this point; the most I can do is contract them. Mike told me to focus on one, flex it every day, 500 times.

Five hundred did, at first, sound like an awful lot. I think Mike intentionally set the bar high, but the number was downright intimidating, and I briefly wondered whether I'd be able to accomplish it. But, as quickly as it appeared, I dismissed the fleeting doubt in the firm resolution that I would reach that number.

I took on Mike's challenge with great enthusiasm. The fact that I can contract the biceps in my right arm at will is amazing, and I celebrate it each time I do. I was glad to have a goal to reach, rather than just working on the muscle in an intermittent and wholly unquantifiable fashion (which is what I had been doing). With Mike's guidance, I now had a method (i.e., counting) to track the work I was doing toward the goal on a daily basis; one by which I could measure future results. Suddenly, 500 didn't seem like such a preposterous number.

Originally, Mike suggested I do sets of 10, or 25, or even 50 if I felt I could, over the course of the day. That sounded like a feasible approach, and I intended to use it, until 10, then 25, then 50, then 100 came and went easily enough during the trip home that evening. I reached 500 with no problem. So, I've been doing 1,000.

After a week of doubling Mike's suggested strengthening exercises, my right biceps did indeed feel stronger (though a bit achy), and I eagerly anticipated seeing some demonstrable improvement during therapy that afternoon.

As I was hoping she would, Kristin (OT) suggested working with the arm skate. The arm skate is a simple piece of equipment designed to reduce the effects of gravity on the limb so the user can move his/her arm more easily. Much like its name suggests, it looks like a small skateboard.

As Kristin strapped my right forearm to the padded board, I was nearly brimming with confidence that I would slide it across the table beside me.

"Ok," she said, once the Velcro was in place, "Pull your arm in toward you."

I pulled, fully expecting it to move. Perhaps not easily, perhaps not far, but some sign of life. It didn't budge.

I pulled again.

Nothing.

I pulled again. Kristin put a slight amount of pressure on the far side of the board and it edged closer to me (as I understand it, that's for positive reinforcement, to help retrain the muscle), but I knew I was not effecting the forward motion myself.

I pulled again, as hard as I could, with every ounce of strength and conviction I could muster. My head throbbed; I suspected I might rupture a blood vessel in my brain from the effort.

Still, nothing.

"Breathe," Kristin prompted. "Your face is about the same color red as Cara's shirt."

I took in a breath and relaxed my jaw – which I hadn't even realized how hard I was clenching until that moment.

It was hard to hide my disappointment. I don't know what I was expecting, but what I wasn't expecting was to see my arm sitting there, not moving, just as it always does.

Two days later, after much internal strife, and relentless haranguing by Statler and Waldorf (you'll meet them soon), I mentioned the situation to Rich.

"You didn't really expect one week of exercises to make up for over 17 years of not using your arm, did you?" he asked.

I thought about it for a moment – as I had been doing for two days prior, but no new insight emerged.

"No," I finally relented. "Well, possibly. But, no. Not really. Perhaps just a little. Not so much expected, per se, as… hoped." I shrugged. "Dunno."

Two days' reflection had brought me no closer to understanding what I was disappointed in, or why. Clearly, I was being irrational, which was nearly as frustrating as my arm refusing to budge despite my best and repeated efforts.

In the days since, I've decided that it's not nearly as easy to temper my enthusiasm as I'd anticipated (or intended). Optimism has usurped my wariness, as it were. Bound to happen, I suppose – I've waited a long time for this.

This situation – waiting, uncertainty, hope, and disappointment – it's all seemed somehow familiar. I've been here before. Finally, I realized I have indeed been here – this reminds me very much of when I was in rehab. During those first few months, no one knew if, or what, I would recover (though the common consensus amongst my cadre of doctors and surgeons projected recovery as rather unlikely). I would often think, "Two weeks from now, I'll have my arms back." Then two weeks would come and go, and I'd set a new arbitrary date in my head. For some reason, it was usually two weeks. "Two weeks, and I'll probably have my hands back. Should start feeling them any time now."

Many, many sets of two weeks have come and gone, none of them ever bringing the anticipated recovery. Conviction waned; a little more slipped away with every missed date until, at some point, I stopped setting them. I stopped anticipating. I stopped hoping.

I've spent so long believing that regaining sensorimotor function was impossible that it was hard not to be incredulous in the beginning of the ICSCI program. Now that I've had some return, and it's squelched those nagging doubts, I think I've actually grown impatient. As I'm discovering new sensations, new connections, new movements, new abilities, I find myself thinking, "It's about time you showed up! I've been waiting! Now, hurry up and be useful!"

All sorts of biking going on

During PT today, I rode over 10 miles in one hour on the leg bike -- the last 11 minutes without any motor support (i.e., the machine did none of the work, it was all my muscles and the e-stim).

During OT, I rode 5+ miles in an hour on the arm bike. 

Go me!  :)

Mike has reconfigured my arm bike FES setup, moving the left biceps electrodes to my left wrist extensors.  Since my left biceps already has good functionality (level 4), the change will give me the opportunity to strengthen the fledgling muscles in my forearm so that I may eventually stop wearing the everpresent wrist splint.

Survey Says... Progress!

OT and PT re-evaluations are done every 30 days. The therapists write an evaluation report for each, to document any changes, record progress made toward therapy goals, and re-establish new goals accordingly. A progress report, of sorts. One of the (many) things I like about the ICSCI is that they mail a copy of each evaluation report to me, so I can easily refer back to the information. (Although, the first couple of correspondences from them were, amusingly enough, addressed to the "Parent or Guardian of Victoria Popdan". Common practice for a children's hospital, I guess.)

Dr. Becker sends me a copy of his evaluation reports, as well. Though I knew I'd made significant progress from what Dr. Becker told me at the end of the evaluation, it's quite another thing to see it on paper. I now have documented evidence that there has been improvement in my sensory/motor function. I can barely wrap my head around it. Even looking at the paper in front of me, I can hardly believe it. But, it's true!

As I mentioned in a previous post, the ASIA exam done during an SCI evaluation quantifies motor function in 10 key muscles – five upper-extremity, and five lower-extremity, on each side – and each of the 10 muscles is graded on a scale from 0-5, with 0 indicating no function and 5 indicating full (normal) function. Maximum score is 100 (50 for bilateral upper extremities, 50 for lower).

The result of my initial evaluation indicates a total motor function score of 5.

After just two months in therapy at the ICSCI, my motor function has increased to 7.

Two points may not seem like much to write home about but, I assure you, it is HUGE. That 1 in the right column might look awfully lonely, standing in that column all by itself, but it is indicative of something I never thought I'd live to see – function in my right arm. That solitary number is not lonely, it is defiant – and it has invited some friends.

Although my right trace triceps is not accounted for here, it is present, and I've been working to strengthen it. It is, however, currently very weak, and sometimes difficult to detect. I suspect it could be that my positioning (supine) during the re-eval exam was different than my positioning (sitting upright) during OT when Mike first found it.

It can also be very difficult to attempt to use a particular muscle because I forget how. I forget how the movement goes. Often times when I try to move something, the other, functioning muscles around it tend to interfere - I'm so accustomed to using them to compensate for the deficit that it's the only way I know how to move, and I can't not use them. This can also make it difficult to detect what is moving.

In all – motor function already improving; from 5 to 7 on ASIA scale.

Tomorrow, I'm back with more good news from the sensory function front.

Subluxation -- Part Two: Leukotape

Working in concert, the therapists have been addressing the subluxation during both my physical therapy and occupational therapy sessions. They use a multidisciplinary approach -- addressing the subluxation from several different angles and using a variety of methods, all with a common goal: to restore joint integrity.

Ultimately, we will rebuild and strengthen the atrophied muscles in my shoulder and upper arm. Until the muscles are strong enough to hold the humerus in place, however, Mike and Kristen, my tag-team OTs, have been taping my shoulder.

During the 2008 Summer Olympics, there was much talk of the tape many athletes were sporting – Kinesio® tape. Kinesio tape does more than look fierce stretched across bulging muscles in swaths of bright colors. It’s used to support joints and muscles to prevent strain, damage, and injury to the taped area.

Leukotape, the tape Mike and Kristin use on me is similar to the Kinesio tape the Olympic athletes wore, but Leukotape is much more rigid and provides more support. This high-tensile tape is used to realign my shoulder, and keep the joint intact and in place, while I work to strengthen the muscles in my shoulder and upper arm. Essentially – training wheels for my shoulder.

It's amazing, the difference Leukotape makes. For the first time, in as long as I can remember, my shoulder feels like it's a part of me. It feels solid. It feels whole. Since my shoulder is sitting in the correct place, it's not always uncomfortable, so I don't need to ask someone to move my arm as frequently. Best of all, my shoulder hurts substantially less. In fact, I'd go so far as to say sometimes it doesn't hurt at all. Bonus!

Read Part One of Subluxation