23 June 2008

offshore scratchiness

Hey hey. I like to make up words. Here goes.

Therapy sessions: last week's sessions were just not so great. I've been a bit sick lately, and thus did not have a good time. Today's session wasn't too bad, though! It was the usual Giger/sitting balance/electrobike schedule, but my usual therapist crew were MIA, so sitting balance in particular was different given the different team. Anyway, I got to do some new arm exercises with neato wrist weights during breaks from uprightness. Weee. Hopefully this week will continue to be quite a bit better.

Complaining: I've been sick. This is where living in Smalltownsville is much more simple/convenient - let's just say the diagnosis and treatment process is fast and smooth in the land where everyone knows everyone else. Here, the most effective way to get things done is to go emergency-style and jump through hoops for a few hours... Blah. BTW, DMC guarantees that you will see a doctor in 29min or less (or something to that effect); this is not the same as being treated/in and out in that amount of time! Oh well, whine whine.

Coolness: First of all, some pals of the awesome variety dropped by on Sunday. Rock.

Also, my "line of irritation" is moving down! Sounds bad already, huh. Here's what I mean. On the edges of areas where I have full sensation, i.e. where "normal" sensation transitions into "limited", I am waaay hypersensitive to touch. It's like having a vicious sunburn all the time in those places. The injury left me with full sensation only above C5, so really just my head and neck have normal feeling. That leaves the line to be along the tops of my shoulders, down to an inch or two below the collar bone, as well as on my deltoids and upper arms. Now I've noticed that the line has crept down my arms, into my forearms on both the radial (thumb) and ulnar (pinky) sides. My hands don't hurt, but I don't expect them to because their sensation develops very quickly enough to skip that step. This is pretty spiff - if my explanations aren't clear enough (likely!), it means that perhaps I'm making significant gains in advanced sensation... Fancy stuff like temperature and sharp things and whatnot might appear sooner than I thought. As in, ever. I must admit, it's nice to be invincible to needle pokes, but I'll gladly trade that for the possibility of holding your hand and feeling its warmth.

And not wanting to injure you for touching me.

13 June 2008

plus a thousand words

Whatup friends! Update on the past few days, sort of.

Wednesday was typical Giger --> weights --> zap bike. Nothing magical.

Today, Friday, saw Giger --> sitting balance --> e-stim bike. Also superficially unentertaining. However,

I sat up slash leaned around with my hands grip-gloved to a bar for 20min at a time! For those keeping score, that's several minutes longer than on Monday, and easily ten times as long as the usual before this week. Total sitting time was about an hour. It was a bit difficult, as I barely have any of the necessary muscles... In particular, the back of my neck hurts from trying to hold my head up perfectly (and failing) for so long. Oh well. No pain no, umm, pain meds? Whatev.

Speaking of feeling like someone slashed my neck open with a knife, it's been more than two months since surgery! Also, if I count correctly, I've been at rehab for... three? Four weeks? No, five wonderful weeks of therapy, ah ha ha ha ha! (Okay, so nobody's going to get that one.) Time is screaming by. Just throwing that out there.

C'est tout pour aujourd'hui. Thanks for reading and commenting and whatnot! You're so incredibly awesome. Rock it.

09 June 2008

dysreflexia with a smile?

Whatup! Good enough day of therapy to warrant an update before I forget, but you'll have to dig in pretty far to get to the happy part.

The day actually started out not so great. I woke up around 4:30a and couldn't get back to sleep - that means maybe 3.5h of z time, slightly reminiscent of school... Then we started getting up at 7:00 to be on time for the typical Monday's bummer of a 9:00 session. Blah.

---[don't be worried in this part]---

Commence Giger. Pedal pedal pedal. After a little while - not even 1000 revs, as the resistance was up perhaps just a bit too high - I could feel my blood pressure creeping up. I was having a rather difficult and rather not fun time on the Giger already, so once the BP jump started, I wasn't sad to ask to get out of the machine. Good idea.

Feel free to e-mail me questions (thejlink at gmail dot com) or post in the comments if the following is incomplete, confusing, or flat out incorrect. For that matter, I'd appreciate confirmation that I have a clue what I'm talking about...

Quick medical lesson: Autonomic dysreflexia (AD) is a syndrome that troubles many spinal cord injury patients with higher injuries, including me. The deal with AD is that the brain/body (the "autonomic" part) misinterprets and therefore incorrectly responds to messages sent from stuff below the level of injury (the "dysreflexia" part). Common messed up signals are temperature extremity/irregularity, needing to go to the bathroom, and anything that should cause pain, among others. Common reactions are nausea, sweating, body temperature change, a dramatic increase in blood pressure, redness, headaches, dizziness, eye pain and more. Severe dysreflexia, not treated right away, can cause stroke and death and stuff. Don't be scared! It's not a big deal, and even useful on occasion, as long as everything is under control. Treatment involves (1) fixing the reaction and (2) removing the stimulus that is causing the problem. That wasn't a quick medical lesson at all!

In short, the patient has to go to the bathroom or whatever, but instead of communicating "I need to go!" with the normal recognizable feelings and signs, the brain cranks up the blood pressure knob, causing headaches and redness and such. To fix, the patient must be moved to as much of an upright position as possible, fetch ice packs, take the appropriate drogas if necessary, and do whatever else may be done; then, hopefully at the same time, the patient needs to empty the bladder, get off the pressure sore, find a cooler location, or stop whatever else is causing the dysreflexia.

Another note before we continue: The Giger is just about the worst position to be in when this happens. If you're lying on your back with appendages up in the air, your circulatory system doesn't really want to bother pumping blood up against gravity, so most of the blood just flows around in your head/torso. Throw in some distal vasoconstriction, and there is more fluid divided by the same volume equals higher pressure. Uh oh.

Yet another: I was prescribed an abdominal binder last week to help boost the BP, and I've actually been wearing it. As far as we're concerned, the binder is a medical corset.

So anyway, that's where I was, strapped into the inverse turtle equipment and starting to get dysreflexic. The therapists are of course very familiar with this stuff, so I was develcroed, debindered and upright at top speed. They even took my shoes off, a trick I had forgotten. To monitor pressure, I was equipped with the "angry nurse" automatic digital wrist sphygmomanometer. She loses some accuracy as pressure strays from 120/80, but this time she measured a ridiculous-but-dramatic 240/160 [corrected: thanks]! Eek! That's about four times my usual measurement, and even double that of the average human... There's no way my BP was that high, but it was ludicrous and temporarily frightening enough to evoke some therapeutic language from those around me.

No really, 240 systolic is a guaranteed stroke, and I'm still alive, my eyes didn't explode, and I'm, umm, as coherent as I get... The angry nurse is a sensationalist. Dysreflexia typically means catheter time for me, ooh yay, so that was taken care of and all was well. Game on, end scary.

---[stop not worrying]---

Here is where the rehab session was smiles. Getting back on the Giger would have been fear-provoking and a waste of time, so we moved on to mat work. Usually after the cath my BP drops back down to the point of nonfunctional dizziness... Not today. I went straight to sitting upright at the edge of the mat with no intermediate rest period, and I was able to stay upright and lean side to side with my arms on giant exercise balls [insert AC/DC song here] for about 15min without stopping to recline! This usually only lasts for 1-2min at a time before I get dizzy, with pretty heavy neck pain after two or three bouts of uprightness. Eeee! I ended up taking only two breaks total during my entire time on the mat, racking up about 30min of sitting without blood pressure loss or neck ouchness. :-)

Okay, that probably doesn't sound very exciting to you, but I felt slightly less abnormal, at least for those few minutes...

I also interrogated my main therapist about her trip to Alaska during the short sit, albeit not very well because it's a bit hard to breathe with the abdobinder. Then it was time for e-stim biking and Wii watching to round out the session. Last week someone Wii-bowled a 279. Wow.

The rest of the day was also pretty good. I even squeezed in a tiny nap.

I have no idea why this all worked out as such, but it was quite serendipitous. Hmm.

08 June 2008

fair enough

Boa tarde! Quick recap of last week.

Therapy: All sorts of Giger and e-stim biking. Weights on Monday (segunda!), short sit on the mat on Friday (sexta!). Wednesday (quarta!) was about an hour of Giger/weights, cut short by an outstandingly brief trip to the ER for a non-emergency. Nothing too entertaining, huh.

Not therapy: As I have stated previously, I went to see Death Cab on Wednesday. As I have also stated, it was like a dream. Saturday (sabado!) the dad returned to c-ville to do a little work here and there. No sharp little pieces involved.

This weekend in Detroit there was a large art fair downtown, complete with art nouveau fingerpaintings, a giant sand sculpture, and several rather small stages for odd local and international bands. The mom and I attended for a little while Saturday aft/eve to browse through the booths and listen to Peter Lewis and friend. Mr. Lewis was the front man for Moby Grape, a late 60's-early 70's rock group that I must confess I had never heard of... Anyway, it was super mega hot and humid out, so after that performance we went back to housing to roast indoors. Did I mention that I'm still reeling from the DCFC show? I would melt to see them again. For some odd reason though, they weren't playing at the fair.

There's not really more worth mentioning, and I should probably be getting to bed. Thanks for reading, pals! Rock out.

05 June 2008

downtown punctuality

This is so incredibly not health-related.

So last night I had the chance to see a wonderful show down the street here in the guts of Detroit. The headliners were Death Cab for Cutie. It was like a dream. If you are not familiar, Death Cab are an indie rock-ish ("college rock" or even "quasi-emo" perhaps?) band that have been extremely popular in the past several years with those my age and a bit older I think? Anyway, there were quite a lot of people there, 20-year-olds and otherwise. The show was at the stunning and enormous Fox Theatre, which is located pretty much as downtown as you can get. Surrounding were plenty of bars and restaurants and such, as well as another venue showcasing Stone Temple Pilots for the evening. Notably, the Hockeytown bar that even I had heard of on ESPN was right next door.

Sports fans can already see where this is going...

Last night was also game six of the NHL's Stanley Cup Finals, with Detroit's Red Wings preparing to Zamboni all over (my team, if I can claim to have one) the Pittsburgh Penguins, here in Detroit. The Red Wings were up 3-2 in the series, such that if they won, they would be this season's champions. It should be noted that hockey is a pretty big deal in Detroit - who wears a hockey jersey to a concert? - and since the home team was just a game away from the Cup, everyone was wound up and a little wild.

The game and the concert started around the same time. After the opening rockers finished up their set (Rogue Wave, for those keeping track), the emcees announced that the Wings were up 1-0 at the time, followed by plenty of cheers and whatnot. On it goes; commence DCFC. Pretty deep into their set I think some people found out the game was over and that Detroit had won, as I could see some crazed dudes running up and down the side aisles of the theatre...

Concert ends. Showgoers dump out into the downtown night. Commence madness. The streets were already fairly full of bar-prepared fans from Hockeytown et al, and now add a theatre's worth of hipsters excited from the show... It was nuts. Traffic was in the process of being stopped, so there were still a few cars trapped in the mix; police vehicles were all over the place. Everyone was honking horns, yelling, cheering, hi5ing, watching the big screens, (vomming on the sidewalk) celebrating in general. It took us at least 15min or so just to get a few blocks away to meet dad with the van. eek!!

Great timing, eh?

01 June 2008

onest p0st!!

Hello pals! Welcome to thejlink, home for John-related news, updates and such (take two). Feel free to read as much as you want and leave commentary where you see fit. Your interaction is highly encouraged and appreciated - even if it's telling me how dumb I am or just saying hi, your comments keep me writing.

Subject material:
Of course, most of the information in these posts will be related to my medical state and progress, therapeutic activities, and other details of my health, because that stuff is interesting and the rest of my life really isn't. However, since this is not a medical blogging site and I have an extremely short attention span, I don't feel particularly obligated to stay on topic all the time. So, beware?

You (1) probably already know and (2) can find this info in the appropriate profile section, but let me pass on a few relevant details about me.

To start, here's the important part (in extremely summarized form). On 24 December 2004, I was in an automotive accident that left me with an incomplete C4-C5 spinal cord injury. Then on 11 April 2008, I underwent experimental non-embryonic stem cell spinal surgery to treat this injury. Directly after this surgery, I began physical therapy in Detroit, Michigan, for rehabilitation. This is where I am as I write this post, and it's what I'll be talking about the most.

The injury - I broke vertebrae C4-C6 in the accident, including a burst fracture of C5. The spinal cord lesion was incomplete and approximately 2.4cm in length, at the C4-C5 level. By chronic phase (several months post-injury), I achieved a score of B on the ASIA examination.

The surgery - Spinal surgery was performed in Lisbon, Portugal, approximately 3.5 years after injury. The procedure was an olfactory mucosal autograft - a transplant of stem cells from my nose to the injury site. The medical team was led by Dr. Carlos Lima of Hospital Egaz-Moniz.

The rehab - Starting 5 May 2008, I have been performing physical therapy at the Center for Spinal Cord Injury Recovery (CSCIR) in the Rehabilitation Institute of Michigan (RIM), located in downtown Detroit. RIM is a part of the sprawling Detroit Medical Center (DMC). I currently live in DMC International Guest Housing, about a block away from RIM. So far, therapy has been one three hour session every Monday, Wednesday, and Friday, for a total of nine hours each week.

Other jlink details - I was born in 1984, and I have lived in south-central Illinois most of my life. I have two older brothers. I graduated in 2007 from Illinois Wesleyan University in Bloomington, IL. I majored in mathematics and minored in computer science. I am quite obviously a total nerd. I like long walks on the beach and late summer sunsets... Are you actually reading this far?? Anyway, I was a Resident Assistant at school for three years, and I loved it. I really like that kind of stuff. I'm also pretty big into anything related to music and musicians, as well as other languages and computational holism. Let's move on already.


OK, that's all for now. Thanks so much for dropping by. I can't even pretend to convey my appreciation of your support. Keep an eye out for updates, and I hope to catch you again soon. Au rev, mes amis!