Daniel's Third Post
/So it's been a bit since an update. I'm always planning to write, but I don't quite get there at the end of the day. So, it'll be a bit wandery, but bear with me. It's amazing to think that it's been about seven weeks since the injury. I've seen patients here at Mayo come and go -- strokes, cancer, head trauma, motor vehicle and motor cycle accidents, and bike accidents. Some stay a few days and some, like me, longer. I'm told that people with my injury used to be here for six months, and quads for a year or more. The old school nurses tell me about patients who were here for years. Some of the nurses have been up here on this unit for 20 and 30 years. Yes, that's way longer than I've been a doctor - and it's another reminder of the humbling nature of life and that we need to ask for help and trust the experiences of those who have seen significantly more than have we. That doesn't mean I can't be an advocate for the care that I want (clearly, I am), but it does mean I have a lot to learn.
We've written a bit about the FES bike that they put me on, and included a video on a prior post -- it has electrodes that stimulate my leg muscles in the correct sequence to make me pedal. I try to do it twice a week - if I end up with one at home I would hope to do it more frequently. The benefits include maintaining muscle strength, decreasing spasms, and helping with bone density. It also helps with cardiovascular health - patients with spinal cord injuries actually have higher rates of heart disease than the general population. So, it makes sense to get this for of exercise in as much possible. As I sat there working on the fake bike, I wondered why I couldn't just hook this up to some recumbant bike and let it to the work for me ... well, turns out that thought of that already. Pretty cool.
Another assistive device that also work to maintain bone density and muscle mass is a standing frame -- the staff strap me into a little sling around my butt and then crank me up to standing height (finally, I'm tall again!) with counter resistance to my lower legs. By using my legs I'm able to put pressure on my bones so they maintain some density -- there is a significant loss of bone density in the first year after injury, and if we find some way for me to walk again but my bones can't support it, that would suck. The rate limiter to length of time in the standing frame is typically my blood pressure -- my body doesn't process position and respond with appropriate blood pressure the same way it used to. If I get up too quickly my lower extremities don't vasoconstrict (blood vessels narrow) and send blood back up to my torso/heart/head as quickly as they used to - because the signal to vasoconstrict can't get down from my head. So blood still pools and then i get light headed when my blood pressure drops. Initially, at North Memorial, I would almost pass out because my blood pressure would drop so low. We do wrap my legs a bit with Ace wraps to push some of the blood back up to my torso and prevent pooling. The first time I did the standing frame here I lasted about 15 minutes, the next time 20 minutes which is where I plateaued for a bit. Now I'm up to 45 minutes which is pretty awesome (though a bit boring). Still have my legs wrapped. But over time we'll do fewer ace wraps as my blood pressure management capabilities improve. While I'm up there in the frame we do some weights or bat a balloon back and forth to build core strength.
The other super badass assistive technology I've used is something called a SmartDrive. Essentially, it's a small motorized wheel that hooks on to the back of your wheelchair to act as an engine - i envision it helping up ramps, helping while i'm propelling around the emergency department when a return to work in a few months, or using it to get around some foreign city where i would normally spend hours wandering the streets. This gives me something like 10 hours of wandering. It's a relatively early device - on version 3, i think. Watch the video -- I have a wrist bracelet on - double tap to start, tap once to cruise control, twice to stop. All I have to do is steer ... and not run into things.
I'm amazed by the ingenuity of the disabled community. I've never been an "idea" guy. I can figure out how to take someone else's idea and create a business model or how to a build a market out of it. Sometimes I think about a problem in the emergency department and have an "I wish I could do <whatever>" moment that should result in a novel innovation. Sometimes it does, but I haven't followed through. But the community inventing things like the SmartDrive are legit - they live and breath the problems that they're solving for, and they realize that their community is so small that if they dont build it nobody will. Of course, that's a problem with the market as well - there aren't huge numbers of disabled in the U.S. so prices on products end up being relatively higher than if there were large demand numbers. And, of course, most research isn't going toward what we call sub-scale problems. Well, I'm a sub-scale problem right now. Sure, there are actually "a lot" of people with disabilities, and many with spinal cord injuries. But as you get down to it, each injury is different and each person may require a different solution. So research and technology development ends up being spread broadly instead of with depth.
Discharge is looming from the Mayo Clinic. Yes, that's scary. Removing a support system is pretty freaky. I've grown to really appreciate the nurses and nursing assistants and physicians here. Furthermore, I'm 3 floors above the emergency department, so I can always hop downstairs to see some of the ED family. After discharge, I'll have a transitional time - likely at another rehab facility in Minneapolis.
All in all (and it's only Tuesday), it's been a pretty good week. I'm getting stronger moving from bed to chair and chair to the matt on which I do my rehab work. I'm learning to open doors. To take food out of an oven - even to move the oven rack up and down. The number of things I need to re-learn or try at a different angle or posture is overwhelming. Obviously it'll be a long-term work in progress. I'll spare all of you the details - but I'm just trying to get bowel movements rights. If that ain't where it needs to be, getting in the car to leave home for a night out will be the least of my worries.