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!"

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.

More from ASIA - Measuring Motor Function

The third part of the ASIA exam tests motor function. It determines the presence, and quantifies the functionality, of 10 key muscles – five upper–extremity, and five lower–extremity, on each side – each of which indicates a specific level of ability.

Key Muscles
elbow flexion (C-5)	hip flexion (L-2)
wrist extension (C-6)	knee extension (L-3)
elbow extension (C-7)	ankle dorsiflexion (L-4)
finger flexion (C-8)	toe extension (L-5)
finger abduction (T-1)	ankle plantar flexion (S-1)

Each of the 10 muscles are tested just as you'd imagine – the doctor or therapist administering the exam asks the patient to move the specific muscle, e.g., "lift your finger up toward the ceiling" or "point your big toe down toward the floor", and such.

From the doctor's or therapist's end, this part can get a little tricky because there are different degrees of muscle function and people who have spinal cord injuries can often flex or contract a muscle without having full use of it, so the doctor or therapist has to feel for muscle movement. As a standard method of quantifying motor function, they use the six–point Motor Grading Scale.

Motor Grading Scale
0 = no active movement
1 = muscle contraction (also called "trace" or "muscle trace"
2 = movement through range of motion (ROM) without gravity
3 = movement through ROM against gravity
4 = movement against some resistance
5 = movement against full resistance

From my end, much like the sensory part, this part of the exam gets a little frustrating. Although I am well aware of the intent behind their asking, being repeatedly urged to move things we both know I can't move is often exasperating. I always give it the old college try when prompted, but nothing ever happens when I'm asked to, say, bend my knee. They always stand there, expectantly, hands on my leg and focusing intently, and I try to move, and nothing happens, and I can't help but feel as if I've failed them somehow. Perhaps my being able to effectively perform only one of the 10 movements (elbow flexion) listed above contributes to that sentiment. I debate diagnostic measures in my head but, for some reason, no amount of rationalizing seems to quash that lingering sense of failure to perform. Logic be damned, some things you just can't argue yourself out of.

This particular point of contention I've long had with the AISA exam is somewhat alleviated, and also somewhat amplified, by the circumstances of my therapy at the ICSCI. It's less vexing when I'm asked to move because I know they're trying to assess and track my progress in therapy (rather than, as it has often seemed to me in the past, satisfy some idle curiosity), but it also heightens that sense of failure because I feel like I should be accomplishing more – as if I should be making faster, better progress in therapy, and my performance during the ASIA exam should reflect that improvement.

Though I never actually expect to move, I still manage to be disappointed when I don't; I can't help but feel that whomever is administering the exam is disappointed, as well. It's rather silly, really. It's not as if I could study for the exam. But, again, no amount of rationalization seems to allay my inner critics. (I have my own personal peanut gallery, but that is a story for another day.)

What I find more exasperating than any other aspect of the ASIA exam is when I feel the muscle move but they don't. I know it's there; I can feel it, I can flex it, I can intentionally, purposefully cause it to contract. Or can I? While I realize that the movement is weak and thus difficult to detect, I'm sure it's there. I'm sure I'm moving it. I'm sure, that is, until the doctor or therapist is unable to detect it.

That particular frustration is typically fleeting, because I know that if I can feel it – even if they can't – there is a connection. Something is getting through. A nerve impulse is making the trip, unmarred and uninterrupted, from my brain to the muscle – that means there is the distinct possibility for improvement.

I know this from experience. I can remember sitting in the OT/PT gym at NRH, not long after I was injured, telling the therapist that there was something in my left arm – that I could flex my biceps. She tested and retested, but felt nothing. It was three years before I was able to lift my hand up to my face; two more years passed before my biceps was strong enough to reliably drive my chair. Who knows if it would've come back at all, if I hadn't been so stubborn and kept trying to move my arm until it did. Who knows how much faster it would've returned if I'd had the kind of therapy practiced at the ICSCI.