Wednesday, August 26, 2009

S.I. Cover Props

I just wanted to throw out a quick public congratulations to Marc Buoniconti for being on the cover of Sports Illustrated last week, which I think marks the first time that a quadriplegic has ever done so. Marc was the subject of a well-written feature article, which you can read here. In short, Marc became paralyzed playing in a football game for The Citadel 24 years ago. Since then he has become the president of The Miami Project to Cure Paralysis and the The Buoniconti Fund. Collectively they have done amazing things to advance the awareness of spinal cord injuries, and have also raised tens of millions of dollars of donations specifically geared towards funding the research and development of medical breakthroughs to find a cure for paralysis.

According to their July 2009 newsletter, "It is no small feat that in 24 years, the scientific and medical community has revolutionized the way people are being treated today. People who are paralyzed are living longer lives with a significant improvement to their quality of life. New therapies that target acute and chronic spinal cord injuries are being developed and are at the FDA’s doorstep waiting for the approval to begin Human Clinical Trials."

I have been wearing a Miami Project 'Cure Paralysis' rubber bracelet (a la the Lance Armstrong 'Live Strong' ilk) since around December 2003. In fact, I haven't taken it off once since then. The middle part of the ‘R’ in the word ‘paralysis’ has recently chipped away, and although I have a bag of up to ten replacements I figure I'll just keep wearing this one until it breaks off my wrist. It's a constant reminder of both past adventures/accomplishments and future outlooks, and hopefully it has brought some SCI awareness to others over the last five plus years that have seen it on me.

So Congrats again, Marc.

Saturday, August 22, 2009

Beware the Rehab Doc (Part I: The Initial Consultation)

A few months ago I sought medical consultation with a rehab doctor. Specifically, one who had extensive knowledge and experience with spinal cord injuries, and all the medical issues that are incidental to that particular lifestyle. The primary motivating reason was because I have been dealing with a nagging medical issue for years that is uniquely intertwined with my SCI. None of my other regular medical personnel have been able to suggest something that has lead to what I feel is a suitable and permanent solution. So I decided to go after a bigger hired gun.

The other, lesser reason is that a friend who works closely with SCI rehab suggested that using an FES bike might be a good addition to my workout routine. An
FES bike is an electrical stimulation cycle that aids in exercising the arms, or much more typically, the legs of people who live with paralysis. It’s a piece of equipment that I’ve known about for years but always brushed it off because I was too wary of popping out a hip or the like once my legs started pumping away. But my recent ramped up diet and exercise routine hasn’t exactly been shedding pounds off the ol’ gut as I had hoped so I’ve come back around to the idea of utilizing it a little more.

But it’s not as simple as finding an FES bike and jumping on to let the magic start happening. It’s highly advisable, if not required, to get a bone mineral density scan beforehand to make sure there is enough structural strength in the hip and leg bones to put them through that repeated motion without suffering an injury. So I double-dipped the appointment to get her to prescribe a bone density scan as well.

As luck would have it, I got referred to a high quality rehab doctor at the
Courage Center, which is a really great Minnesota-based rehabilitation and resource center that “advances the lives of children and adults experiencing barriers to health and independence.” In short, they provide a wide range of services that cater to all kinds of disabilities, at all stages of rehab. I am very familiar with the Courage Center because not only did I live there temporarily for the first three months after I moved to Minneapolis to start law school in August of 2003, but I also workout in the Courage Fitness Center every Friday afternoon.

Regardless, after just two visits with said rehab doc it’s already gotten to the point where any further scheduled visits will become dubious endeavors. But it didn’t start that way. As soon as I met her the first time I took an immediate liking to her because she was a cool lady and we vibed well. Since it was a first time visit with a new patient she had to do the quick once over. In this case, that meant initially assessing my SCI level of injury, which typically consists of wanting me to keep my arm cocked while she pulled on it to test my biceps strength; doing my best to resist her as she pushes my arm towards me to test triceps strength; asked if I could squeeze her hand and if I can move any fingers to test my hand dexterity; asking where my level of sensitivity ends, etc. No big deal usually. They do their thing, realize I'm still pretty strong, tell me I'm a c-7 (again, c-7 being the seventh cervical vertebra) quadriplegic, nothing I didn’t know already. Ho hum.

Not so much this time. Instead, her conclusion was that I was in fact a c-6 quad, not a c-7. Total mind blower. Completely contrary to what I’ve been told and known about myself for over thirteen years. Apparently the determining factor was the level of sensitivity that I have in my fingers: I have full sensitivity in my thumbs, full sensitivity in my pointer fingers, half sensitivity in my middle fingers, just a trace of sensitivity on the fingertip and bottom side of my ring fingers, and no feeling in my pinkies whatsoever. It was the fact that I don’t have full sensitivity in my middle fingers, in her experience, is what makes me a c-6 quad instead of a c-7. So after thirteen years of thinking I was a c-7 quad it took less than five minutes to reveal that I actually wasn’t.

C-6, c-7, close enough, no big deal people might say. Not so in my opinion. First of all, in the SCI world there can be stark differences in physicality and functional abilities between c-5, c-6, and c-7. Second, what that revealed to me was that I was actually “more disabled” than I thought I was. I mean technically not because that probably means I’ve always been a c-6 quad. But mentally that’s how I felt about it. It was like the disability side of my life had just taken a bit of a step backwards. Ergo it was a rough, personal revelation.

The other thing is that over the years I had taken a bit of an ownership in being a strong, active, and independent c-7 level quadriplegic. So in a weird way I always felt proud to be a c-7 quad, as compared to other levels of SCI injury. It kind of said “I can do more for myself” and things of that nature. And in my experience as someone with a disability I’ve found that there hasn’t been much that is directly related to it that I’ve found pride in. I mean I’m not typically going to be proud to be disabled, especially as compared to formerly having been able-bodied. That would be absurd. But don’t let that be confused with the amount of pride I have in my accomplishments as someone with a disability since my diving accident. Because I do. Strong pride.

But trying to come up with a list of other things to be proud of in the strict disability sense is a little harder to do. I know I had a large amount of pride in the fact that I had two hugely attractive girlfriends in the three year period after my accident. To help paint the picture: a pretty, petite blond I dated just before and after my accident and then two years later a stunning, redheaded, green-eyed, athletic, buxom bombshell of a girl I had been friends with for years—I'm talking dream girl material. The pride factor in that regard was that I had the privilege of dating two gorgeous girls “despite” my having a significant disability, a notion which I now admit was a bit of a self-limiting line of thinking. But that’s how I felt at the time, and how I might even feel that way again as well because of the stigma that people with disabilities have to “settle” solely for less attractive romantic partners who are "ok" or "comfortable" with their disability lifestyles. Or worse, the stigma that nobody would want to date a person with a disability because it's too different or weird. Proud that I had a cool set of wheels—both wheelchair and van? That’s a big stretch. But given the circumstances of my medical diagnosis I definitely felt pride in holding myself out as a c-7 quadriplegic within the quad SCI world.

And to be clear, that is not to indemnify any other c-5 or c-6 quads out there either. I either know or am good friends with plenty of people at SCI levels of injury below c-7. I'm not insinuating that at c-7 I was better than any of them. That notion is ridiculous, because relatively speaking we’re all in the same boat. Moreover, I think any quad at any level of injury would give a lot to move up even one level to claim that extra functionality. That said, all I'm saying is that I considered it a disappointing shock to the system to discover that I was actually a higher level of injury, and thus a higher degree more disabled, than I had grown to embrace over the previous thirteen years. Of course, I also readily admit that I probably have made too big a deal of it all. But still. At the least I'm going to refer to myself as a c-6/c-7 quad, a la my blog profile, to hold onto my past c-7 glory.

Returning back to the doctor visit, my new official medical diagnosis was c-6 ASIA B incomplete SCI with c-7 motor sparing B. Other than the c-7 and incomplete parts none of that was any description of my SCI that I had ever heard of up until that point. Accordingly, she did write me a medical script for a bone mineral density exam, blood work, and a creatinine test—which I’ll delve into in a follow post before this one turns into a monster. Because in a lot of ways discussing the circumstances surrounding those tests, and what the results revealed, is the more interesting and share-worthy side of this tale.

But for now I offer this first part concluding warning: beware seeking a consultation with a rehab doc because you might just leave more medically disabled than when you arrived.

Saturday, August 15, 2009

Weekend Quotes

I've got another blog post in the hopper but it wasn't ready to share before I headed off to my parent's lake cottage for the weekend. But I came across a few interesting quotes recently that I thought I'd share in the meantime.

Quote #1: I saw this on a bumper sticker: You may all be laughing at me because I am different. But I'm laughing at all of you because you're all the same.

Now that's not to insinuate that I sit around and laugh at others who aren't in wheelchairs, but I thought it was a good message that beckons people to think alternatively about all kinds of people who are different. It's an interesting phrase to chew on.

Quote #2: This comes courtesy of actor/rock frontman/spoken word artist Henry Rollins. I was watching the special features of some crappy DVD I rented through Netflix called 'The Devil's Tomb.' I think Rollins was asked if he brings anything different to the table when he does independent movies as compared to big budget studio movies. He said "I bring my 'A' game to the post office, I'm not messing around, life is too short!" I thought that was awesome. It gave me a little extra gusto pop to my own everyday outlook on various things.

Unrelated, I thought I'd also post
this interesting article written by a guy who had to spend a number of weeks in a wheelchair due to pelvis injuries. He chronicles his observations about life in a wheelchair. Welcome to my world sir, relatively speaking.

Sunday, August 9, 2009

My Congrats to Derrick Thomas on the HOF

In light of last night’s NFL Hall of Fame ceremony I wanted to pay a small tribute to the former great Kansas City Chiefs linebacker Derrick Thomas, who was inducted posthumously. I was never a Chiefs fan but as a follower of sports in general I always thought he was an incredible, bad-ass linebacker who in a stellar 11-year career changed the whole defensive game. Entire offensive game plans were geared around slowing him down. He was also great off the field as he was highly involved with charity work, including his own Third and Long Foundation which promised to “sack illiteracy.”

But I think that what has been understated in the last nine years is that DT died of medical complications related to a catastrophic spinal cord injury he sustained in late January 2000. He was traveling to the Kansas City Airport in a snowstorm and got thrown from his car in a traffic accident (he was speeding, weaving cars, and not wearing his seatbelt). I remember first seeing the news break on SportsCenter and it was very disappointing to learn about. The early reports were that he was paralyzed from the chest down, same as me. So my heart immediately went out to him because I had been there, done that, and knew what he was going through at that moment. My first instinct was to try and contact him somehow and offer up my friendly insight as a fan and a friend, but ultimately decided not to because I figured getting to him directly may be a fruitless effort. Still, I feel like I have an instant connection with the people who’ve suffered SCIs after me.

Unfortunately, he died two weeks later of a pulmonary embolism. The early reports were that he died of a heart attack which mystified me because he was barely 30 and a highly fine-tuned athlete. I was angry because I figured his medical staff must have messed something up. But when more accurate details followed that it was a massive blood clot that developed in his paralyzed lower extremities and traveled through his venous system to his lungs then it all made much more sense.

To put the proper emphasis on it, blood clots can become major issues for folks with spinal cord injuries, at all stages of their SCI journey. From a medical standpoint, if blood clots get loose they can travel to the heart, brain, or lungs and cause strokes, heart attacks, etc. I remember doing a group workout session at Craig Hospital in Denver once and they shut the show down for one guy because they felt some swollen tightness in his leg, indicative early signs of a blood clot. They brought in a flat board and lifted him up onto a hospital bed right away, making sure to keep him real flat and still so the clot didn’t shake loose. It was a tense few minutes and a scary sight to observe so soon after my own injury.

I myself was lucky enough to evade the blood clot thing at all stages of my post-injury rehab. In fact, I wouldn’t have a sniff of an issue of it until 2003 when on the weekend before I started law school I was hospitalized for five days with a leg infection and blood clots in my right calf. I was shocked because I lead a pretty active life, as compared to one that’s much more sedentary, so I'm not sure how it all came on, but it was what it was. I would go on to have two more relapses in the following year, and the pattern was always the same: precautionary ultrasound, prescription blood thinners, frequent leg elevation, and constant, internal prayer that the clot wouldn’t break loose so I would suffer a stroke or heart attack at any moment during the indefinite recovery period. Thankfully, the clots just went away each time, and I haven’t had any subsequent blood clot issues since the spring of 2004 either.

Anyway, the news of DT’s death was a crushing revelation. I remember going out into our kitchen to fill up my water cup and telling my mom that he passed. As I did so my voice cracked a little and I had to fight back a tear, both of which were unexpected floods of emotion. But it was a big deal to me at the time. It was quite sobering and showed how traumatic spinal cord injuries can be, not just at the instant of the accident but in the immediate amount of medical care required to sustain overall physical stability.

So at the least listening to his induction speech last night made me reflect on how fragile and dangerous this disability can be, and how quickly things can go south medically, even if you’re in stable health like me. In that regard, I’ve been pretty lucky to have avoided all of the major medical pitfalls that come with this lifestyle for thirteen years and counting.

So congrats to Derrick Thomas and his family on the Hall of Fame induction, and may he continue to rest in peace. He was a good player, a good person, and one of my “fallen SCI brothers.”

Saturday, August 1, 2009

Permobil, We Have a Problem...

I've been using a power wheelchair full time since a week before I started college in late August of 1997. During all stages of my post-injury rehab, during my senior year of high school, and through that following summer I used a manual chair. When I had to transition to my power chair I had a tough time initially because I thought it made me look much more disabled, like I was too lazy to push myself, along with all the functional adjustments I needed to make. But it was a necessary evil because, as my former Craig Hospital physical therapist (who was an ex-Navy SEAL) put it, if I didn't have a power chair to get me in and out of my van and around the college campus I'd be "kicking my own ass."

The power chair I chose to get was the
Quickie P200. I remember we had to sort of back door get it on the sly through my dad's work insurance because our primary medical insurance taxed it's limit on "durable medical goods" when they covered my Quickie manual chair. I think my manual chair was between $4-5k and my power chair closer to $10k. Absolutely ridiculous considering at the time you could practically buy two brand new small sedans for the same price. And it’s even worse now days.

But at the time the Quickie P200 was hands down the Cadillac CTS of power wheelchairs: compact, functional, highly maneuverable, great in tight spots, unassuming, and speedy (e.g. top speed of 7 mph, could do a full speed wheelie for up to 100 yards right out of the box). While I was at Craig Hospital in Denver I got a chance to test drive it for a few days so I gained a pretty decent level of comfort with it. Even though I wear my UW Badgers fandom on my sleeve, and thus red is my favorite color, I decided to go with black because I thought the neutral color would “hide” the chair beneath me rather than flaunt it. It has been a greatly reliable chair for going on twelve years now. Very few problems have arisen, mostly involving the replacement of worn out parts (e.g. armrests, tires, batteries).

About a year and a half ago it was determined that I was in a position for my insurance to cover a new chair. My Quickie has always been in such good shape that when I told one of my health liaisons that it was over ten years old she said I could definitely get a new one paid for. I didn’t think I needed one but also thought that it would be nice to have a backup. Then I went through this arduous year and a half long process of testing new chairs every few months, for about a week at a time as demo models were available. I had a hard time finding the right fit because despite new technologies none of them could hold a candle to my Quickie in all the areas I needed.

In the end I chose the
Permobil C350. It was the best of the batch of 6 or so chairs I tried, which wasn’t saying much. Plus this chair had some bells and whistles I wasn’t accustomed to: tilt, recline, leg elevation—the three combined and I could lie out flat if I wanted. So I took the plunge.

But almost immediately I had buyer’s remorse because once I started using it fairly regularly I realized it was a lot bigger than I remembered demo-ing. I sat 2 inches higher, it was a few inches wider, it was over half a foot longer, etc. than my Quickie. No person in a wheelchair wants to get taller, wider, and longer in their ride because generally we are already sitting almost a head length taller than everyone else and have enough issues moving around out in public settings. Moreover, lots of functional issues started popping up: because it was so much bigger I had to back into my van, it barely fit in the van, had to back into my bedroom to go to bed instead of going in frontwards and doing a spin, using the toilet was hard, I kept banging into stuff, the wide wheelbase made turning in tight spots super slow or non-existent, etc. But I kept putting up with it because I thought I would adapt to it with more practice. All the while I was still using my Quickie as my primary chair, which defeated the purpose of getting a new one to replace it.

Then I started having weird computer/mechanical issues. For example, I would go to recline/tilt and the buttons would just blink and do nothing. Or it would lock me into “turtle” mode (not kidding, when you recline, etc. beyond “unsafe” operating degrees the green lights go yellow and a little turtle dude pops up on the display). Or a few times I was on the way to the kitchen and it would slow to turtle mode, then stop, then the joystick would go to sleep (again, a picture of a joystick with Z’s displayed). The only solution was to turn it off then on again, a la rebooting a pc. But I was doing it up to 10 times a day, and in potentially precarious locations (e.g. by the toilet). It was frustrating and stressful and I’ve had it repaired a few times now. I kept thinking it was a matter of time before I got stuck.

All that said, cut to the other night. I was at my desk turning off my computer and set to back up and get ready for bed. But the chair didn’t move. I looked at the display and it read “system error” and blinked a “!” Awesome. So I turned it off and on again, nothing. Did it a few more times, nothing. Great. Completely stuck and stranded at my desk at 12:30 am. My head quickly assessed that I needed to call my PCA (i.e. personal care assistant, in other words the lady who helps me out in the morning) but my heart didn’t want to. I’ve had to do it a few times in the last five years and hated it every time. Hate putting someone out. Hate being a burden. Hate that the phone is by her husband so he wakes up too. So I tried desperately to do what I could to get it to work again on my own—on and off about 40 times, putting it in and out of gear, etc.—knowing fully well the whole time that my efforts were futile.

So I made the call at about 1:15 am. There was no one else I could have called instead. She and her husband stopped out which was obviously very nice, despite the dire necessity. We switched my chairs out within a few minutes, they left, and I didn’t get to bed until after 2:30.

I had to call her a little over 2 years ago for a similar issue. When I started my last semester of law school my Quickie motor, demonstrating 11 years of use and abuse, started sounding like a small motorcycle engine with a muffler blown out. It was loud, obnoxious, and mortifying. Especially as I made my way around my law school building. I tried to be as quiet as I could but it was impossible. I got all kinds of looks. I even put serious thought to skipping class here and there to save further embarrassment. I told that to 2 great law school friends over post class drinks one night and my friend Randi said “Don’t you dare do that, screw what everyone else thinks!” Once we left the bar and got outside where they could hear my little engine that couldn’t in all it’s unglory they doubled over laughing. It put things into perspective, a better light, and as I left for home I had a changed attitude. I couldn’t help it, what could I do?

But as soon as I got out of my van back in my garage it started grinding harder. By the time I got into my apartment I had trouble steering. And when I did a turn in my living room to head to the bedroom it locked up and quit moving. Had to make the late, 1 am call that night too.

And thank God I was near my phones both times or I would have been really screwed. Bigger picture, it’s in those moments where it slaps me in the face as to how immobile, vulnerable, and reliant on other people, things, technology, etc. that I truly am. In my mind I just want to temporarily stand up and push the chair myself, and sometimes I revert to my manual chair mindset and want to row my arms on the invisible push wheels. Moments like that are real hard to deal with. But thankfully the extremes like those detailed above have rarely come along over the years.

But at the least, Permobil, we have a problem. Even when it’s fixed I think my confidence level with it’s electronic functionality is shot. The whole ‘fool me once shame on you, twice…’ thing. I’ve already set the wheels in motion with the powers that be that it’s not working out with that chair, but after the other night we’re heading for much less of an amicable split. And thus the Quickie still stands alone…