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topic -- determined, of course, to resume the abandoned post, but usually return to find the material to have become outdated in the interim.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

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.

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.

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.

60-Day Reevaluation

ASIA exams are onerous, and I often find them frustrating. I've been through two of them in the past week.  

I had my 60-day reevaluation with Dr. Becker, the doctor overseeing my case at the ICSCI, on Tuesday, October 7.  Part of the evaluation was an ASIA exam, which would quantify any changes in my level of sensory/motor function since beginning therapy.

The ASIA exam consists of three parts. The first two test for tactile perception of light touch and pain at each of 28 key sensory points, each correlating to a different level of the spinal cord (C-2 through S-4/5).

The doctor or therapist administering the examination begins by lightly touching an area of uncompromised sensory perception (the face/cheek) with a cotton swab, to demonstrate “normal” sensation – the sensation with which all test sensations are compared during the exam.  Then, the exam begins at C-2.  The examiner touches each of the key points, on both the left and right sides, with the cotton swab, and asks the patient whether he/she is able to feel it.

The pain test is conducted using the same method, but the implement used to induce sensation is a pin, rather than a cotton swab.  The pin stick doesn’t really hurt, but ability to perceive the sharpness does determine whether there is viable pain sensation at a particular point. 

I lay on the exam table with my eyes closed (so I can’t see when/where the sensory input is being administered).  Dr. Becker touches the end of the pin to my face; I feel the sharp point on my skin and see a tiny white dot appear and fade into the blackness behind my closed eyelids.  

“Does that feel normal?” 

“Yes,” I say.

He repeats the test on left side of my neck …  

“That?”  

“Yes.”  

… on my clavicle…

“That?”  

“Yes.”  

… on my shoulder…

“That?”

“Yes.”

… on my chest…

“That?”

“Yes.”

… on my arm, just above the elbow…

“That?”

“Um… sort of?  I felt the pressure, but it’s impaired.”

Then his voice comes from what sounds like the vicinity of my hand…

“That?”

But, I haven’t felt the stick, haven’t seen the brief spark of white pierce the darkness behind my eyelids.

“Um… no.”

“That?” he asks a few more times, but his voice is the only sensory input pervading the darkness.  “No,” I respond to each.  There is nothing.

It’s at about this point of the ASIA exam that I usually become a little frustrated.  Testing beyond my known functional level has always seemed rather perfunctory to me.  I mean, it’s not as if I’m suddenly going to feel something in the lower 85 percent of my body where I haven’t felt anything for 17 years…

A fleeting twinge on the inside of my upper arm.  “That?”

“Um… yes?”  

I’m fairly sure that wasn’t there before.  

Looks like I’ll have to rethink that ‘perfunctory’ theory.  

Riding the RT300 FES Bike

Tuesday (10/14/08) was an exciting day in PT. It was my first time using the FES bike with my legs.  I was only able to last about 20 minutes; the muscles in my legs have atrophied after such a long period of disuse that, even with the e-stim, they don't have enough strength to continue working long before fatigue sets in.  Cara, master of informative analogy, likens it to a marathon – without training, a runner's muscles might be able to last short distances, but can't maintain a running pace through the entirety of a marathon.  Our goal, for now, is to build up the amount of time I can sustain viable muscle contractions while using the bike. 

Using the RT300 Bike is one of the central elements of the ICSCI therapy program.  The repetitive motion of the legs pushing the pedals helps to re-establish neural pathways in the spinal cord so the electric pulse of messages can travel between the brain and the body, facilitating communication and allowing the brain to control parts of the body.

The bike is a sophisticated, multi-faceted piece of equipment created by Dr. John McDonald, PhD., M.D., based on Patrick Rummerfeild's work.   It has a built-in computer system, running Windows Mobile on what appears to be some flavor of Compaq hardware, with a Bluetooth Internet connection.   Therapists are able to program patient-specific session parameters remotely, via Web browser, or through the touch-screen interface on the bike.  

One of the really great features of this exceptional piece of equipment is that it monitors and records therapy session data such as amount of stim used, amount of energy expended, session time, distance traveled, and several other variables.  It uploads the information to a database to track user progress.  Therapists and users can log into the Web interface and generate reports that list statistics and create graphs to illustrate progress over time. 

Cara attached electrodes to my quadriceps, hamstrings, and glutes, and took the leg rests off of my chair.  I pulled up to the bike, and she and Keena set my feet on the foot plates and strapped my legs in.  They attached the electrodes on my legs to the blue wires that plug into the onboard computer. The bike itself controls the e-stim, rather than a separate Empi unit.

Cara (who is always amazingly well-prepared for everything) had already programmed in all my settings, so she just logged me in to the system and pressed the big green “Go” button on the touch screen.  

The bike started up in “passive therapy” mode, which is used as a warm-up period.  In passive mode, no stim is sent to the muscles; the mechanical device inside the bike turns the pedals, usually for a period of three to five minutes.  As the pedals began to turn and my legs began to move, I just watched.  It was almost surreal, watching my own legs pedal away, moving in a manner I hadn’t seen for half a lifetime.  

It was almost a sensory overload for me.  I’m not accustomed to that much input, and it was almost overwhelming.  For the first few minutes, it consumed my brain power – in fact, I had to excuse myself from a conversation with Cara because the sheer strangeness of the experience usurped my attention and seemed to short-circuit my thought processes and I was having difficulty following what she was saying.

I can hardly describe the sensation.  The closest I could get, at the time, was “floaty”.   Perhaps not the best word choice – words like “floaty” are often used to describe the lightheaded sensation that occurs during a rapid drop in blood pressure that often precedes loss of consciousness.  Cara, who was particularly wary of adverse effects during my initial biking session, was alarmed by my description, until I assured her I meant my legs, not my head, felt floaty.

After five minutes, “active therapy” mode started; the e-stim kicked in, causing the muscles in my legs to contract and push the pedals.  I could discern between the active and passive modes, but I’m not sure how.  How each mode felt to me, of course, is much different than it would feel to someone with unimpaired sensation, so there was not as drastic a difference between them for me, thus making it difficult to pinpoint what had changed.  I will work on isolating the difference and describing it to myself during my next biking session, so I can more accurately convey the experience in future posts.

Though I was able to last only 20 minutes during my Tuesday session, Cara tweaked some parameters and I went for 30 minutes on Wednesday.  We’re working up to doing an hour at a time.  Cara said that an hour using the bike is equivalent to 5,000 steps, which is about half the number walked daily by the average person.

Today was my first day of therapy at the Kennedy Krieger Institute. I was only slightly anxious before going into the gym -- it's been quite a long time since I've been in one, and I had no idea what to expect -- but I know it would've felt a lot worse if Rich hadn't been there. I was so glad he went -- all the trepidation and uncertainty had vanished, and I knew I was safe because he was there.

My new PT, Cara, is but a wisp of a woman -- a mere 5' tall -- and I immediately wondered how she would handle moving me, but she did very well.