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topic -- determined, of course, to resume the abandoned post, but usually return to find the material to have become outdated in the interim.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.

Right Forearm Makes Its Debut

Time is relentless. I can hardly believe it, but a month has passed since my last PT re-evaluation; two months have passed since my last ASIA exam. Thus, today's PT session was spent doing a 30-day re-eval and 60-day ASIA re-exam.

Over all, therapy is going remarkably well. It seems that I'm recovering more function all the time. If only someone had told me years ago that the secret to recovery is slapping on some electrodes and sending electric pulses through my body! (Ok, so that's an arrant oversimplification, but you get my point.) I try not to dwell too much on "What If"; however, I can't help but wonder what a difference this would've made in my life had I known about it years ago.

I've recovered quite a lot of sensation down both of my arms – so much that a couple of spots during today's ASIA exam actually surprised me with how vivid the sensation was. Some spots are still impaired, but much less so.

What's more interesting to me is what I've been feeling in my arms beneath the skin.

Over the past few months, I've noticed a change – more drastic, more significant, in my right arm, but substantial in both – in what I can feel inside, and what I can "move". (Move, here, is something of a relative term – although it is not something you'd be able to see, I am able to flex/contract, or 'move', different muscles in my forearms.)

Before, it was nothing. Well, something – a sense of existence, but more an aesthesis. When I would try to move my fingers, for example, the sensation in my arm, instead of continuing down into my hand, dissolved into the ether just below my elbow. When I wasn't looking, and someone moved my hand, I couldn't tell you how or where they'd moved it (that's proprioception, and mine, for the most part, is lousy below the elbows).

Now, when I try to move my fingers (in either hand), it's much different – there is a subtle, yet distinct, shifting. I can feel the muscles down the outside of my arm tense when I try to lift my pinky away from the rest of my hand. The muscles down the back of my forearm strain when I try to bend my wrist back. Although my fingers, wrists, and hands don't move appreciably during these attempts, I can feel taught strings pulling brightly inside the murky recesses of my forearms.

It's a long ride from Olney to Baltimore – about an hour and 20 minutes without traffic (but there's always traffic). During the 3 or so hours I spend in the van each day I go for therapy, I move things. I concentrate on different areas and try to move. Cara, always with the fantastically useful advice, suggested I look up pictures of muscles in my arms so I can better visualize what I'm trying, or succeeding, to move. That has helped quite a lot.

Last month, during my re-eval, I told Cara I could flex the muscles in my forearm. Though I could tell her which ones I felt working for whichever movement I was trying to accomplish, and they were the correct muscles, Cara could not feel them. After a month's worth of flex-filled commute time and therapy, this month Cara could feel them in my right arm, and actually see them in my left arm.

Now that a neural connection between my brain and my arm muscles has been established (or, more accurately, re-established), the next order of business is to build up and strengthen my muscles – which are, after 17 years of disuse, quite frankly, wasted.

More Progress -- Numbers Going UP!

In addition to quantifiable and documented proof that I've had an increase in motor function, Dr. Becker's evaluation report presented evidence of a return in sensory function, as well.

Much like motor function, the ASIA exam also scores sensory function, however, on a different scale. Light touch and pin-prick (pain) sensation are graded, at each of the 28 key sensory points, as follows:

Sensory Grading Scale
0 = absent sensation
1 = impaired sensation
2 = normal sensation

The official ASIA exam form provides guidelines on where key sensory points for each level are located. It also does a nice job of delineating exactly to where the nerve roots of each vertebral level corresponds to the body.

This (right) is what I like to call the ASIAn Man. Perhaps a modern Vitruvian – only illustrating a different standard of measure. Each area on the ASIAn Man is labeled with the vertebral level that determines its sensory function – i.e., C4 is labeled as such because the nerve roots that carry nerve impulses back and forth to that area of the body insert just below the C4 vertebra.

The black dots in each area indicates its key sensory point – i.e., the spot that is tested with the sharp/light stimulus.

The response to each is graded and recorded on a chart, much like the chart used for scoring the motor function of the exam. The maximum score for each side is 56, for a total of 112 possible points. (If you have no neurological damage, you would score 112.)

There are typically two rows to the following chart - one for upper extremities (C-2 to T-8), one for lower extremities (T-9 to S4/5) - but, my second row is all zeros, and that's rather depressing, so we'll stick with the upper extremities. For now. ;)

My initial evaluation exam resulted in these scores:

Sensory exam, pin-prick

05/06/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	0	0	0	0	0	0	0	0	0	0	0	0	6
L	2	2	2	0	0	0	0	0	0	0	0	0	0	0	0	6

That's grade 2, or "normal", sensory function down to C-4. It's fairly typical, as C-4 is my level of injury. So, that's a grand total of 12.

After just over two months in therapy, my exam score was:

Sensory exam, pin-prick

10/07/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	0	0	0	0	0	0	0	0	0	0	0	0
L	2	2	2	0	0	0	0	1	0	0	0	0	0	0	0

Another lonely 1 in the left column, surrounded by zeros. I am, however, undaunted by what might appear to be a negligible development because the promising part is not so much in the number itself, but the colum it stands in – T-1. That is the exciting part! If there is communication down to T-1, then there is hope for all the zeros between it and C-4. And, if I'm able to recover that one connection after 17 years, then there's hope for all the zeros that come after it.

My light touch scores, which were already higher than pin prick, made a more significant jump.

Sensory exam, light touch

05/06/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	1	0	0	0	0	0	0	0	0	0	0	0	7
L	2	2	2	1	0	0	0	0	0	1	1	0	0	0	0	9

That's a total of 16. Just as is evident in my motor function, my left side is stronger.

After two months in therapy, my sensory function scored:

Sensory exam, light touch

10/07/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	0	0	0	0	0	1	1	0	0	0	0	0	8
L	2	2	2	1	0	0	0	1	0	2	1	0	0	0	0	11

And that is a total of 19. I'm very excited at all the numbers popping up down in the T level -- not to mention thrilled with what I'm now able to feel. For example, I can now sense hot and cold on my upper left arm, a few inches lower than I was previously able to feel. I can feel the stim on the back of my right shoulder, just below my scapular -- both the muscle contraction and the electrode being placed on my skin, neither of which I could sense in September.

If we can return, for a moment, to our ASIAn friend, you can see how my light touch scores translate over:

There are a few discrepancies between the two sets of results (e.g., there was presence of impaired sensation at right C-5 in May that did not manifest in October). Based solely on my own experience, I believe it is because sometimes, where my sensation is impaired, I have difficulty discerning between sensations. In some places,well below any levels that are scored on the ASIA exam, I can feel pressure, but no skin sensation. In other areas, I can feel something has touched me, but I don't feel the sharpness of the pin. So, it's often difficult to say, since I can't see what's going on and my sensory perception is not 100 percent.

Over all, my ASIA scores have gone from 12 and 16 to 13 and 19 on pin prick and light touch, respectively. We're heading in the right diection!

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.