Videos of rehab progress (Mayo days)

Sitting up is a bit different these days. First, I'm limited in flexion (sitting forward) by the TLSO brace (the white contraption on my chest) -- at least for another few weeks. But typically, people sit up from bed by using their abdominal muscles and leg muscles to get up. Since I don't really have those (or, more accurately, they don't work), I need to use my arms as levers. Initially it was super hard - and the rib fractures didn't help much. But this is now my primary mode of sitting up in bed: stick one elbow underneath, shimmy, then the other elbow, shimmy some more. Repeat. Once I’m up I can do things like get dressed and get out of bed.

Proper positioning is the key to transfer success, both into and out of a wheelchair. Well, that and appropriate body mechanics, upper extremity strength, momentum, and head movement. Here you see the multitude of things I have to think about to plan a transfer. Where am I in the chair. Is the tire in the way. How forward am I. Where are my feet positioned. You don’t see the detail that goes into where to position feet (distance, angle, relationship to knees) when they’re actually on the ground. Even with perfect mechanics, that can make or break a transfer.  To be clear, this is not pretty .... nor does it actually get to the transfer.  It's a bit of a failure, frankly -- something to learn from and do better next time.

Similarly, getting into the wheelchair, in this case from bed. Because I’m in an unusually high bed (I have a bariatric bed so that I can have room to roll side-to-side, but it sadly has a weird minimum height) I put one foot on the wheelchair footplate before I pivot (or try to pivot) into the wheelchair. And do my best to avoid landing on the wheel. Landing on the wheel can cause skin damage which is a downward spiral of hell.

Some people with spinal cord injuries (SCI) get some degree of spasticity while some get none. Most do, with statistics as high as 65% or more. Basically, if you touched your leg with a cold hand or had a painful stimulus, the nerves in the muscle in your leg would send a signal up your spinal cord to your brain which would send back a signal to move the leg to move the muscle ore react in some way. For me, the signal from the leg doesn’t make it to the brain, so it gets caught in a feedback loop and that causes the leg to move involuntarily – which causes a spasm. It can be painful. I initially didn’t have much, but then they ramped up and were so painful that they went all the way up by abdomen and pulled on my ribs and tore an intercostal muscle (the muscles between ribs). This made it painful to breathe for a while. So I started a medical called baclofen to help stop the spasms. I still get them, but they’re reduced. And we do things like stretch and use the functional electrical stimulation bike to try to decrease the spasms. But they’re still there. I’ve started to learn how to harness them for good – like if I want to roll onto my side, I can touch my leg and trigger a spasm that will move my leg and help me roll. Having some degree of spasticity also helps position legs for transfers because the spasms means there is at least some muscle tone to work with. But, they’re still a bit crazy and people who don’t know about them see my legs move and think I’ve hit some miraculous recovery. Sadly not.

I practice a ton of these transfers every day. So by the end my arms are pretty worn out. The goal is to depress my shoulders so that I lift up and throw my head to the opposite direction from where I’m going so my butt will get up and move and so I get lift to clear the bed or bench or chair or whatever. The more tired I am, the less lift I get. Even the peanut gallery (my mom) chimes in that I couldn’t get any lift.

There’s no doubt that at some point I’ll be independent – I’ll be able to do all my ADLs (activities of daily living) by myself, transfer into and out of bed, shower, stretch, get dressed and get around – all without help. But I’m not there yet. My parents are awesome have been by my side for almost all of the last two+ months. We’re starting to help them do some of the things that I’ll probably need help with – whether it’s rolling back into bed (that’s called a “tuck and roll” that my mom is helping with and it’ll end up being my go to back-to-bed movement, though I wasn’t too good at it when we filmed this) or stretching (dad’s working my leg). It’s definitely a family affair. Part of the challenge is the dynamic of telling someone what to do – not just with family but also with friends. They call it “directing your care” here, and the expectation is that you’re able to tell people exactly what you need and how you want it done. Admittedly (and not surprisingly) I’m pretty good at that. But it still feels weird and somewhat rude telling your parents exactly what to do.

It turns out that one of the biggest drivers of autonomy is the ability to get up and out of the hospital. It took about four 1-hour sessions of therapy to learn how to get into my car.  I'm still in the rudimentary stages of this, especially with the TLSO brace on, so I still use the transfer board (the wooden board). Once I'm more fluent I hope to look like all those people on youtube who easily transfer into their car, deconstruct their wheelchairs, and get on with their lives. But I'm not there yet and the struggle is real.

One question we keep asking is: "how do I get off the floor when I fall from my wheelchair."  Cause let's be honest, that's gonna happen.  And my parents aren't exactly going to be game for picking me up. Essentially the play is to raise yourself up to progressively higher stable surfaces until you can get back into your wheelchair.  Again, I have this TLSO on so it changes my balance a bit.  But they're starting me off by raising myself up and then throwing my head forward so that it pushes my butt back onto the solid surface behind me. (Ideally I'd have my hands behind me on the surface to do the pushup, but I'm not there yet.) So in the first of the two videos I push up on a slightly elevated block and then get my butt backward. Notice my legs are bent in a butterfly/ring formation - this decreases tension on my hamstrings and means there less total surface area that needs to move. After I'm up, I need to lower myself back down, gently.  Check it out:

Arm strength - shoulder health - is the most important thing for me. My shoulders now act as my legs/hips/everything so I need as much protection as I can for them.  This means strengthening the shoulder muscles but also building up strength of triceps and other muscles so that I have the upper extremity strength to transfer and move as healthily as possible.

Here they have me working my arms.  Feet are elevated onto a strap that is placed around parallel bars -- and then i just do a whole bunch of pushups.  (Yeah yeah, the form isn't perfect in these - we fixed it so I could go down to 90 degrees.)

One of the most important transfers is how to get onto a toilet. While my home bathroom will be designed to minimize this, with my love of travel I will undoubtedly need to get onto a toilet at some hotel or a friends house at some point. So I need to learn to safely transfer onto and off of a toilet.  (The cushion on there is called a Roho cushion that is air cells that  off-load the pelvis and bones from the hard toilet seat.)