31 May 2008

first last post?

SATURDAY, MAY 31, 2008 10:13 PM, EDT
Hey all! Lightning-quick week summary, and I shan't monotonize your brain with more.

Nothing profound has happened all week in the medical department. Monday was a holiday, so my sessions were Tues/Wed/Fri instead. Some sitting balance and weight training, coupled with plenty of Giger and e-stim bike amusement. The goal here is to keep you updated, but I don't mean to bore you with the same "ladybug and FES" post every time I write! zzzzz

Quick and dirty enough, I hope? I think I'll be moving the blog to another platform soon; I'll keep you posted - ha ha - when that happens. Not that anyone is reading, anyway. Go Penguins! Later.

25 May 2008

lappy days

SUNDAY, MAY 25, 2008 09:33 PM, EDT
Whatup! Updates and rambles coming, as usual. Watching Juno at the same time, so no promises on concentration...

Therapeutic activities:
Wednesday saw a coincidentally convenient break from the Gigerbug. The Giger bike (and quite a few other activities) requires hand grip, which I can't do voluntarily; to emulate this function, there are all sorts of ways to affix my hands and wrists onto upper appendage equipment. Unfortunately, the straps we've been using, combined with the quite repetitive motion of arm cycling, have worn my knuckles pretty redtastic. So that day sans Giger was appreciated.

Now that I've said all that, Wednesday's replacement activity was lifting weights on the machines on the first floor... With the same grip straps. Oops! It was a different motion, though - rowing, sort of - so not a problem. Some mat work, kinesio tape removal (ouch!), and time on the zap-bike rounded out the Wednesday session.

Friday was back to the Giger for a chunk, then free weights downstairs, then the e-stim bike. Pretty typical, eh? While I was on the bike, my rockin' also-therapizing neighbor did sitting trunk balance on a "peanut" (think two exercise balls fused together like a big 3D rubber Venn diagram) and simultaneously racked up twenty plus consecutive knockouts on Wii boxing... She's good. I can't even throw a Wii punch. Or sit on a peanut. Mmm, legume therapy.

I mentioned "lifting weights downstairs" without explanation. The Center for SCI Recovery, where I have therapy, is the second floor of the Brasza Outpatient and Fitness Center (part of the Rehabilitation Institute of Michigan, itself part of the Detroit Medical Center, whew). The first floor of the Brasza dahdeedah is basically a big gym - gym as in "gym membership", not courts and basketball hoops. There are zillions of weight machines and mats and treadmills and stuff. I think there are all of the necessary machines for a complete Nautilus fitness sequence, but no guarantees. I've been working on a rather all-purpose machine that I can't even pretend to describe well; it has cables that facilitate curls, tricep extensions, lat pulldowns, etc. Weee.

I haven't said anything about blood pressure either! Wow. As of Wednesday, I'm taking twice as much midodrine as before, which actually just brings me up from the starter to the normal dosage. Now that it's been a few days on the larger-dose regimen, I think it's helping some. To start, I'm trying to avoid putting my feet up. It's tough to tolerate, but I'm getting slightly used to it. Vision still goes sparkly during travel between home and rehab, courtesy of sitting up + brightness. One day at a time, they might say? I'm also adding extra salt to pretty much everything (I put salt in V8!). It seems so wrong.

Nerd therapy note:
I finally broke down and got a new laptop, and it arrived a few days ago. I claim that it has therapeutic benefits. Here's why.

First and foremost, it has a pretty big, glossy display that reflects more than a Kate Chopin essay. It's like sitting in front of a mirror all the time. I have to look at myself constantly no matter what I'm doing. Vain? Bah. Equivalently, I must stare at my terrible sitting posture and watch every screwy little thing I do that makes me twist my neck poorly, tilt my shoulders, fold up my wrists, etc. etc. etc. (In case I was not sufficiently self-conscious) Benefit: it's awful to look at myself, and I knew I was doing these things anyway; now I see when they happen and what to do to remedy.

Next, the keyboard includes a number pad on the right, such that the QWERTY section is offset quite a bit to the left. The touchpad is pushed over a gauche as well. I initially thought this would favor my left-handedness, but not so! The leftmost keys are far enough over that my armrest gets in the way, and I have to either reach around the outside of the armrest or use my right hand to press q, a, z and the like. Also, my left arm is straighter and the shoulder is higher when I use the touchpad. Benefit: mandatory exercise of left shoulder and right arm/fingers.

Finally, this thing is even bigger than the last lapster, and getting the "extended" battery does not conjure images of feathers and breezes. As in about ten pounds. The screen hinge is stiff, and a larger display means [radial integral] pushing it a greater distance to reach the same angle as before. The CD drive is on the opposite side, so I have to work harder to get to it. The media buttons on the front are difficult to press. Benefit: pushing the behemoth around on my lap/desk, simply using it might qualify as real exercise! Evil rubber feet.

So, wasting my life away on this new purveyor of zeros and ones is a justifiably healthy activity, even ignoring the actual intended utilities of such a machine. Ha. QED.

All done, methinks. Tune in next time for, umm, more letters and maybe words and sentences. Thanks for reading.

20 May 2008

multitask... fail!

TUESDAY, MAY 20, 2008 03:26 PM, EDT
Hey cats! A quick update - I'm in the process of transitioning from one computer to the next, so I've been short on chances to recount. This battery is about dead, too. Excuses excuses. Here goes.

Friday therapy: Giger aka supine beetle, weight lifting, e-stim bike. Again, a huge increase in resistance on the Giger. Am I working here?? Otherwise, business as usual.

Weekend: Sleep sleep sleep sleep sleep! :-)

Monday session: Lots of mat work. My blood pressure was behaving nicely, so we worked on sitting balance = positioning upright on the edge of the mat, feet on the floor, etc., like sitting in a chair with a therapist back rest. Currently, most of the work is keeping head up/neck straight/shoulders back; if you have ever seen me post-injury, you are likely aware that my upper body has learned to slouch into an unhealthy position so I can stay balanced... Yet another thing to unlearn! In case it would be too easy, I also have really weak neck and trapezius muscles (for keeping my head from falling forward), and very little control of the correct back muscles to pull my shoulders back and straighten my spine. Oh well. During all of that, we also did some random arm reach exercises, and as a break I would lean on my arms to work on that kind of balance.

Next was reclining on a wedge on the mat (30 degrees or so) and doing simultaneous neck exercises and estim-assisted bench press. BTW, I am incapable of concentrating on more than one aspect of a single exercise at once, let alone multiple complicated activities... There are some funny stories to be had there, but I don't think I have enough battery to divulge at the moment. Probably only entertaining to me, anyway. After these exercises was some prone (face-down) time on the mat, doing arm lift and head lift stuff. So hard! As I stated earlier, I have little voluntary control of my back muscles, and the ones I can contract are not strong. Weak, I say. Weak. Wrapping up the session was the usual time on the e-stim (FES, RTI, ERGYS) bike.

After the mat work, I had some Kinesio Tape stuck on the back of my neck, running from my hair down to the middle of my back. Google it.

"You're out of time!", Liquid Snake would say. I'm sorry that this post is rather incomplete and uninteresting; more to come in a few days. I'm not sure who you are, oh current blog reader, but I probably miss you. Thanks for your support. Rock out.

15 May 2008

Rx: supersize

THURSDAY, MAY 15, 2008 09:10 PM, EDT
Whatup! Therapy, doc appointment, blah blah drugs blah.

Wednesday's rehab session was dope uncut, especially relative to Monday's sad struggle for systole. Plenty of Giger with the resistance cranked a fair bit higher than before. To illustrate, consider that the Giger functions quite similarly to a bike, and we keep track of work according to the total number of cycles performed in a session. Each session has been 45-60min. Over that period, I only managed half as many cycles on Wednesday as either of my two previous sessions. In other words, I had enough of an increase in resistance to accomplish half as much measured work, still sustained over a cardio-worthy time period. Weee! Further, I'm not sure what effect it has on the workload that both arms and legs are attached. On one hand, since I don't have any voluntary leg muscle contraction, so my arms have to do all the work. That sounds like a tilt towards mass-building exercise for my shoulders. On the other hand, how would it be different if arms and legs were all functional? Hmm.

After the Giger was the Total Gym, as advertised by Mr. Norris. It's a grizzly bear-sized apparatus where you can lay on a sliding rest part and push against another side part with your feet or whatever. Don't mistake me for someone who can describe stuff accurately. I used it for assisted inclined squats: lay on slide part, angle whole machine so I'm inclined about 30 degrees head-up from supine, have therapists help me go through knee bend/straighten motions. This exercise doubles as a controlled weight-bearing procedure; more on that some other time. To make it even better, we attached electrical stimulation to my quadriceps muscles so that I could perform some of the leg straightening actively. Even even better better, we talked about running track and how incredibly bad I was... Between squat sets I did quasi bench press with my arms, which were pretty much blobs of goo after so much Gigering.

Then was a good load of FES (RTI, e-stim) biking and watching of the somewhat-new Transformers movie. I'm glad the toys were not as complicated as their onscreen CG counterparts...

Thursday = first appointment with the doctor here. The only part worth mentioning is that I now have midodrine at my disposal to combat hypotension. Midodrine, often sold as ProAmatine I think, increases blood pressure via peripheral vasopression - that is, it shrinks blood vessels, reducing circulatory volume and therefore [physics equations] increasing circulatory pressure. The hope is that I can take some before therapy and be able to do sitting balance and other upright work without almost passing out every two minutes. Sounds good to me!

Pointless commentary coming! Taking meds to increase blood pressure seems all wrong. Millions of people around the world work so hard (or don't) to fight precisely the opposite issue; I feel like I have been prescribed McDonald's three times a day, for my health? But it is obvious that I need it to do, well, just about anything, and I've tried just about everything else... So strange! More tangibly, I'm slightly concerned with autonomic dysreflexia issues and the likelihood of oxycodone and midodrine simply cancelling each other out. But again, these are matters for their own posts. We shall see how it goes.

Also, chalk up yet another doubter to prove wrong. Bring it.

C'est tout, je pense!

12 May 2008

[not exciting]

MONDAY, MAY 12, 2008 02:48 PM, EDT
Howdy y'all.

Not the best day-o-therapy today on my part... Did the Giger aka inverted beetle just fine, but spent the next hour or so after that battling the blood pressure. 64/36 != ideal! Eventually I had some luck staying up on the e-stim bike and taking on the Wii.

On the bright side, it's the first time I've played video games in a bit more than three years! I'm so outstandingly terrible at Wii Sports, though... Watch out. That console is violent.

Game over!

09 May 2008

first week!

FRIDAY, MAY 09, 2008 09:55 PM, EDT
Guten Abend meine Freunde! I started writing and accidentally wrote a mini-paper about something else. Let's try again.

Therapy recap!

--The Giger. This machine involves laying on my back and simultaneously pedaling an arm bike and a leg bike, which are connected. Think upside-down crawl, or maybe upside-down ladybug? Killer shoulder workout, since it was unassisted and I don't have any leg movement yet.

--Lots of work on the mat. So far I've been rolling side to side and working on sitting balance/movement. Rolling is, well, hard. Sitting is quite an adventure! I have frequent orthostatic hypotension aka no blood pressure whatsoever, so I can only stay in position for a few minutes at a time before I start to lose it. Then today (Friday) (sexta-feira) they were holding me in sitting position and having me do stuff with my arms. I must relearn quite a bit there, as I spent most of that time freaking out about not balancing on my arms somehow... And oh yeah, they cut the back of my neck open about a month ago; those muscles seem to be a little weak.

--RTI electrical stimulation bicycle both Wednesday and Friday (cause of mini-paper). In short, it's a souped up exercise bike. Fortunately, there are lots of people and a Wii in that room most of the time for entertainment. Yes I did say Wii therapy.

Not much else to mention medically, I suppose. Thanks for sending me messages! :-) Coming soon, documentation of how little physiology I remember correctly... Ate breve!

05 May 2008

session #1 + more observations

MONDAY, MAY 05, 2008 09:21 PM, EDT
First therapy session! Ok, first was "where do we go", followed by outpatient registration, but then therapy. The session took place 9am-12pm. I kicked it off by getting off the elevator and promptly hearing, "John Link!" I turned to see Brian, the Program Supervisor with whom I had been trading e-mails to organize all of this post-surgery stuff. Awesome! We schmoozed for a minute before hunting down my therapist club. Bonus points for such a suprising welcome.

Time to start the festivities. First, we spent a solid 1-1.5h rolling around on the mat to evaluate my abilities, limitations, etc. It was fascinating to me to see what had changed since the surgery in Portugal, and what I wasn't even aware of in the first place!

Note: some of this might be disheartening on the surface; recall that surgery was 24 days before this evaluation, and afterwards it takes a while for the body to catch up again.

--Arm and leg touch sensation are strange and patchy. I have already mentioned this, but now I have a more complete objective analysis. Pre-surgery, I had fairly thorough light touch sensation all over, and it was consistent everywhere below injury. That is, I felt soft things not quite as well as a typical non-injured human, but nothing was numb and I could identify location accurately head to toe. Now there are a few places on my forearms and upper and lower legs where I can't feel soft touch or identify location correctly. Also, my right forearm and the ulnar half of that hand are a little numb all the time, and touch sensation there is weak. Oddly enough, sensation in my feet is as good as before. Huh??

--I have shoulder subluxation. So, the joints shift slightly out of place when I try to move an arm from one end of its range of motion to the other. Minor bummer.

--Some parts of my right arm and shoulder are stronger/more developed than the corresponding parts on the left side! I'm left-handed, and I had assumed the left side (esquerda!) would naturally function better than the right (direita!). False! Most notably, I think my right bicep is stronger than my left.

--Apparently I have slight control of the glutes and some hip muscles. Mind, nothing functional - I can voluntarily cause muscle stimulation, i.e. "fire the tendons", but I can't move anything. Smiles nonetheless. I can't even guarantee when I started to have this ability, since it has never really been tested on me before.

After the eval, there was some time left to pedal on the RTI (FES, ERGYS, electrical stimulation) bicycle and talk about Tigers baseball.

First session done!

travel travel move move

MONDAY, MAY 05, 2008 04:00 PM, EDT
A ho-hum recount of travel, locaton, and living arrangements...

Sunday was travel day. It's 8-9h of driving to get from Carlinville to Detroit; add flat tire, stops for gas/food, and an hour lost to the change of time zones, and it becomes a solid day's journey. I watched Juno in the car. Weee. Arrival was about 10pm Eastern, and unpacking was another few hours.

The parents and I are staying in the international guest housing facility on the Detroit Medical Center campus (think a little apartment building, a little hotel). I don't have a camera handy, so here is a merely literal brief description of the place. We have a second-floor suite consisting of a bedroom, bathroom, and living room/kitchen separated by a little bar-ish counter deal. There are TVs in both main rooms, random furniture items, and a few closets strewn about. Both main rooms also have giant windows on the east wall. Though we were told it would not be, the bathroom is thoroughly accessible, aka "roll-in" - no dividers at all. Yay! Showers are nice. Overall, it's a slick little pad. Size is difficult to convey; if we use the length of a typical bed as our measurement, the living room and bedroom are a little less than two beds by two beds each, while the bath and kitchen area are a bit larger than one by one. For the Harriett-familiar, main rooms are slightly smaller than suite shared spaces, and bath and kitchen are each about the size of my HH bathroom. Ugh. Did I mention I have a hard time grasping spatial characteristics?

Almost every feature of the suite itself has been quite clearly designed with accessibility in mind. The bathroom is obvious: it's completely tiled minus the ceiling, there is a corner for the shower with a movable bench, it has bars on the wall all around... I can even get to the sink, albeit sideways. Elsewhere, the kitchen area is wheelchair-height, and the bar/counter/kitchen separator is low enough and only protrudes on one side. The most clever trick is placing an open closet in the bedroom by the bedroom <-> living room door, such that the door swings into the front of the closet, out of the way of chair travel. Unfortunately, there is still at least one obvious problem in accessible suite design - the main suite door is completely manual, cramped for space, and operated from the outside with a normal key. So, I still need someone to let me in or out. Oops!

The entire international guest housing building has nine floors. I don't know what the address is yet, but of course we get mail n such. There is a lounge on the first floor with vending machines and continental breakfast in the mornings. This lounge is also the keeper of our good friend, Mr. Wireless Internet. Mr. I is also reachable down the hall on the second floor. Thus, I am not connected in my room, but can be at any time without even leaving the floor. While this is not quite the 'net IV I long for, it is quite sufficient. To round it out, there are: some hotel-style services such as regular quasi-housekeeping, a lot of space for kids on the first floor (day care?), laundry somewhere in the building, and parking for residents right outside.

The Detroit Medical Center (DMC) campus area is enormous, intertwined with Wayne State University here in basically downtown Detroit. The Center for Spinal Cord Injury Recovery (CSCIR) is located on the second floor of the Brasza Outpatient and Fitness Center in the Rehabilitation Institute of Michigan (RIM). Sounds fancy, possibly adventurous to get from home to therapy and back? Bah! It's maybe a block from housing to the RIM, and not even on the street. I love it. There are some big buildings on the way at least, but I don't have to romp through the city to go to therapy. It's eerily like going to class...

Descriptions of the CSCIR later. That's all here. Next up, first therapy session details.

02 May 2008

some post-op observations

FRIDAY, MAY 02, 2008 10:33 PM, CDT
Hey! Second post, first real update. It's been three weeks since surgery. Here's how I feel:

1) Slightly warmer than before.

2) Numb and tingly all over. In particular, my hands feel much like they did early post-injury - my right hand/arm actually appear to have less sensation than before surgery. However, this is expected; any pathways around the injury that the nervous system had previously learned have basically been sabotaged and must be relearned.

4) Still neck-sore from surgery. It is much improved from when the incision was stapled together (through two weeks after the operation), but I'm still dependent on the chair headrest most of the time. Transferring bed <-> chair and turning in bed are rough. The incision area is still sensitive to the touch... but I got a haircut today, it didn't hurt, and I didn't freak out!

8) For the record, my nose does not hurt, and never really did. The stem cells were taken from waaay far up in my right nostril. I don't remember an exact quantity of gauze packing used, but watching them remove it all was like a nasal clown car. Since my left nostril was untouched, I smell ok [insert pun here].

16) Anxious and excited to start therapy in a few days. They say it will be hard and a lot of work. I'm familiar with these terms. Bring it.

Thanks for dropping by! Catch you again soon, I hope.

the first first

FRIDAY, MAY 02, 2008 09:27 PM, CDT
Hi all! Thanks for dropping by. This is where you may find "official", jlink-certified news, updates, progress records, etc. related to my health status. I don't really know what to put in the standard first post... Here goes.

One-line blog purpose:
On 11 April 2008, I underwent surgery by Dr. Carlos Lima's team in Portugal for treatment of incomplete cervical spinal cord injury; this site will track rehabilitation progress and serve as a source for as much related information as I am able to provide. As with most health-themed journals, it is also a center for family, friends, and those interested to connect.

The slightly longer story:
I'm John, obviously. I was born in 1984 and have lived in Carlinville, Illinois, essentially all of my life so far. In 2003 I finished up high school and started college at Illinois Wesleyan University in Bloomington, IL.

Early 24 December 2004, my brother Steve and I were involved in an automotive accident outside of Carlinville. Steve was a-ok (which is exactly as I would prefer). I broke my neck quite expertly - C4-C6 vertebrae were damaged, including an obliterating burst fracture of C5. One of the doctors likened the C5 fracture to "stepping on a light bulb". More importantly, though, was an incomplete spinal cord lesion approximately 2.54cm in length at the C4-C5 level.

So (skipping myriad details), I put in a few months at some hospitals and The Rehabilitation Institute of Saint Louis, and was on my tetraplegic way. I made it back to school at IWU that fall, 2005, and wrapped up in spring 2007.

School out of the way, I started working towards Dr. Lima's olfactory mucosal autograft procedure as a treatment for spinal cord injury. It is a non-embryonic stem cell surgery, and not approved within the US at this time. Lots of work, medical tests, and e-mails later, the parents and I were on our way to Hospital Egaz-Moniz in Lisbon, Portugal. The operation took place 11 April 2008, and I returned to the US 21 April.

That's as far as the story goes right now. In a few days I'm off to the Center for Spinal Cord Injury Recovery at DMC in Detroit for some heavy duty therapy.

Let the blogging begin.