Driving on the road to autonomy

As you might imagine, independence and autonomy are incredibly important aspects of my life that I need to regain.  I don’t want to rely on someone to drive me, nor do I want to rely on public transportation. 

So, I needed to learn how to drive again as paraplegic.  This involves lots of steps, including getting into the car (car transfers), disassembing my wheelchair and getting it into my car on my own. And of course, actually driving. 

With my physical therapist we’ve been practicing my transfers without a board which is getting easier. My time for getting the chair in is decreasing from 35 minutes down to 7-10 as I practice.

Here is a photo after getting the chair into the car- wheels in the back seat and frame in the passenger seat.

 
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I also took drivers ed while here at rehab. I had to pass some cognitive testing because of my  head injury. Then I learned to drive with hand controls. Push to brake, pull for gas. And use a knob on the steering wheel to handle the wheel. 

Over the course of 4 days, I practiced driving (in the snow!) and passed my DMV drivers test. Now I have a new drivers license! One step closer to independence! Now we’ll get my car outfitted with hand controls. Honestly, though, I just hope we get these self-driving vehicles to the point where they’re as viable and price-appropriate as soon as possible. That's really what I need!

 
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How to get off the floor...a work in progress.

Getting off the floor is one of the hardest things I'm learning to do.  It's a feat of physics and strengths. Not two of my strongest suits. I need to know how to get off the floor because, obviously, I'll fall at some point.  Also, because then I can play with my nieces or my own children (hopefully, someday).  Or because I'll fall.

There are a few different routes to accomplish this.  There are assisted and unassisted. There is a method where I can get myself into a crouch between a solid/steady object and the chair. (See: https://dbgstrong.causevox.com/blog/videos-of-dbgs-progress-part-6)  And then there's this way, which probably has some name, but I don't know it.  If you want to see how this is properly done by people who have been in wheelchairs longer than 3 1/2 months, please google "wheelchair floor transfer" and watch an expert.  Here, you get to watch me struggle. But this is part of the learning process.  We did 4 attempts.  Didn't film the third one, unfortunately.  

 Attempt #1 is a front view. My PT blocks part of the view while the therapy aide holds the chair. Watch the positioning of the legs, an important step to get this right. 

 
 

Attempt #2 -- sadly, we cut off the floor work here, so you don't see the leg work or the bump up onto the foot plate.  But you see that the the struggle is real.   

 
 

Attempt #4 after a good third attempt.  I'm exhausted at this point. It's not the prettiest, and I ask for help at the end.  My right arm just can't find the "foothold" of where to stabilize itself and I don't have the strength to get myself up on my own.

 
 

This will get better.  We don't have a lot of videos of the first few transfers except at in other posts below when I was going up on to mat. But this continues to improve significantly

Musings on gratitude and loss of control

As we enter this holiday season, I get to reflect on how blessed I am to have such an incredible group of friends and family ... and the tentacles that extend from that to create a network (all of you!). I can imagine creating a visual relationship map and how cool it would be. I don't know many of you. Some of you I've met once, maybe even randomly at a restaurant and you saw the story on Facebook. Many of you know my parents or my brother and sister-in-law or my close friends. And here you are, checking in to see our progress and being generous with a contribution. I'm so incredibly grateful for this generosity and this web of incredible people in which I've suddenly found myself. 

You likely wonder what you've donated to ... and whether your contribution will go to some valuable. The short answer is that there is a lot of uncertainty ahead, and we don't quite know the medical expenses that lay ahead. Sure there will be medications and equipment that we need. I'll need to adapt my car to be able to drive with hand controls. There will be adaptations that make my home more livable (yes...Lutron lighting systems are Alexa and iPhone controlled so I can turn lights on and off with ease!...technologic innovation certainly improves accessibility!). This also means that I need to be a good steward of your generosity. .... which comes to some comments on control.

If you knew me before the accident, you likely know that I have have strong feelings about right and wrong and strong ideas about controlling outcomes when I have the capabilities to do so. I've gotten better in recent years and learned to focus on those things that I can actually control. Well, this new stage of my life really means that I have to double down on this idea -- only try to control the things that I can control. Yeah, that's hard for me. But I have only so much energy, and to expend it on things I can't control (like bathroom remodel timeline!) is a waste. BUT I do like fighting for what I believe is right and fair, whether for myself or for others. So I decided to marry good stewardship of your generosity with my desire to control and fight for what's right ... like what insurance covers for me equipment needs! I believe that insurance should make an investment in my future -- set me up with the best possible equipment now so that my shoulder's stay strong and their integrity intact for as long as possible. So, when they denied things like an ultra-lightweight wheelchair and a commode chair, I was shocked that they'd be so short-sighted. If insurance didn't cover, we'd need to use this fund to help -- and I'd obviously rather insurance step up. So, I did what I do. I appealed, wrote personal (and clinically logical) letters, engaged my clinical team for help, told my former employer about my challenging customer experience with the insurance provider, asked my friends (you know who you are!) who had contacts and were similarly outraged for help, and then did it again. And again. And we "won." Which is pretty awesome. So, I want you to know that I'm using my total loss of control over some aspects of my life and channeling it toward some things that I think I can try to control (or influence). And as a result, I'm attempting to be a good steward of your incredible generosity! Small victories feel pretty good these days! 

Brace off and making progress

I received permission from my neurosurgeon to take off my TLSO at the end of the three month period.  The assumption is that the bones have fused and the spine is less reliant on the titanium hardware (made by my awesome former employer Medtronic's Spine division) So, basically a week and a half ago.  Actually, it was to "Wean" it ... slowly use it less and less to adjust to life without it.  The first few days were scary and painful. I'm suddenly using muscles I haven't used in three months and I'm pretty wobbly. Naturally, I take the extreme route and go 8 hours without it on the first day.  Bad idea.  The next day I did it a bit more reasonably and cut it into 4 hour blocks.  That worked better.

Without the brace on I can be more aggressive.  I can twist. My ability to reposition myself in bed has improved. And I can sit up straight and engage my core.  That's one of my top priorities right now -- rebuilding core strength to help with transfers (moving from surface to surface), sitting balance, dressing (like sitting up and putting on a dress shirt so I can get back to work ... no, the only barrier to me getting back to work isn't putting on a dress shirt).  I was annoyed during the first three months when people kept saying "wait til the brace is off" ... because I didn't have much choice but to wait.  So here we are. It's definitely different. My back hurts in different places. But not having it means not relying on someone to help me put it on or take it off.  It's given me independence and freedom.  I remember the stress of trying to teach my parents how to put it on, operating under the assumption that they'd be responsible for it. We didn't know I'd end up at Courage Kenny so we prepared for working as a team. 

But it's pretty awesome to have it off. I have to relearn everything - starting with balance and transfering. But it also allows me to more aggressively work on strength. Check out these videos -- you saw them with the brace on, but even more aggressive work without it!

 
 
 
 

Boxing?

A few weeks ago, my cousin Martin came to visit from Switzerland. He turned into my sparring partner for Wii Boxing. Remember the Wii?  I definitely have one at home ... it's probably been in a box for 8 years (sorry, Aaron, thanks for the thoughtful gift!). But here we used it for core strength and balance.  You can tell from my face that it's not as easy for me as my able bodied cousin ... but this was a tough workout.  I still have the TLSO brace in this photo, so it's doing its job to support me.  But nonetheless this was a great workout to sit up straight and engage the core.

Videos of progress

Occupational therapy focuses on core work -- how do you strengthen core muscles so that I can actually perform ADLs (activities of daily living) like getting dressed sitting on the edge of the bed. It helps to have trunk control so I can reach and lean to grab things.  But it's a process to get there. Because my injury has left me without a lot of functional abdominal muscles or back muscles, my core is pretty weak. It's difficult to grab things off of tall shelves, pull my shirt over my head, or sit on the bed and button a dress shirt.  So strengthening my core is important. 

 
 
 
 
 
 

PT here at Courage Kenny is intense.  It was at Mayo too ... but as I progress, I get to new challenges that I have to conquer.  Below are a few examples.  

Instead of using a standing frame, we're just straight up standing here. I have to build the core strength to adjust my hips so that I stand up straight and aligned. My therapist here realizes just how tall I really am.

 
 

Starting with 2 inch curbs (basically a crack in the sidewalk) .... have to be able to smoothly get up those, so get momentum, time the wheelie to get the front wheels (casters) up and then the back wheels down.  Then you go back downhill -- pop another wheelie and get the back wheels down first.  I'm now practicing on 5 inch curbs. 

 
 

This is a balancing act.  Seriously. A bit harder with the TLSO on because it limits my ability to lean forward to find a center of gravity. But the rehab goal here is to hold a wheelie for at least 15 seconds -- and to wheel forward while in a wheelie for some distance.  This is all helpful to get up and down things, like curbs, stairs, and hopefully onto the balcony at my home!

 
 

I assume I'm going to fall at some point.  And hopefully get on the floor to play with my nieces (or my own kids, inshallah some day). So I need to be able to safely to get to the floor and back up. The going down is a bit scary. On this I'm sitting on a little stool ... but I've also figured out how to get to the ground on just the ground.  It's a long way down.  Back up is a bit more work .... peep the bright red face.  That's how I know I'm working! All physics....

 
 


This way is a bit more complicated.  Lotsa lifting. And the TLSO doesn't help.  But imagine I'm climbing onto a bed or a face first up onto a wheelchair.  Note the "Am I kneeling" question ... no idea where my knees are or where my alignment is. My face doesn't get any less red doing this one.    

 
 

Some earlier work from Mayo ... working on both core and arm strength.  This is called "quadruped" position -- basically up on all 4s.  They're using the lift to support my trunk, stacking my hips over my knees, and guiding them so they stay relatively aligned.  Add in some shoulder work with push ups or batting a weighted ball back and forth while simultaneously working the core to make sure my hips stay stacked and aligned right-to-left.

 
 
 
 

Out and about

So .... this is actually not best practice.  But it worked. Cold as hell night in Minneapolis for our first foray back into the world of restaurants and bars. Had to get up the curb, so Ron popped me into a wheelie and we got up.  Got the job done.  Part of what I'm working on in PT is to be able to get up (and down!) curbs like this on my own. It's a process, and at times a scary one. 

 
 


I love my home.  It's a beautiful loft condo with a view out over the Mississippi River and a Minneapolis landmark, the Stone Arch Bridge.  But my parking spots require me to ascend this gigantic ramp to get up it. The peanut gallery is having some fun with me here.  But it's 50 feet of 5 degree incline. On carpet.  With this, I still have the TLSO brace on -- but it'll get easier over time.  Not quite sure how I'm going to do the groceries, though....

 
 

Change is good... and scary

This week I left the Mayo Clinic for Courage Kenny Rehabilitation Institute in Minneapolis. After 64 days at Mayo, this was pretty tough. I was comfortable at Mayo - I had a routine, knew the nurses and nurses aides by name, had great relationships with the therapy staff. I knew my way around and had things set up the way I liked them in what was essentially a dorm room. The day before I left I was pretty crabby … I mean, really pissy. At everyone. I couldn’t figure out why or what was wrong. I argued with my dad about ridiculous things. Poor form when you have amazing parents like I do who put their lives on hold to be at your bedside for months at a time. Clearly, it was the stress of change. 

Leaving was actually pretty emotional – the bonds with the staff and therapists had grown strong and I’m so grateful for the time and energy they put in getting me functional. But change is also good – a new environment with different therapists, different equipment, and the requirement for more independence. Courage Kenny is licensed as a skilled nursing facility, so nursing ratios are much higher. One nurse usually cares for 12 patients. In my case, that’s ok because I require less nursing care and more nursing-assistant care – with the goal to become as fully independent as possible. So this environment actually works well for me. The therapists, similar to those at Mayo, excel at neurologic conditions – spinal cord injury, stroke, etc. There’s a pretty big gym here so I can do more endurance and weight work. There’s also a pool, which allows another range of therapy activities. (Next week!)

Ultimately, I goal is to return home as independent as possible. While the change from Mayo to Courage Kenny was scary, this is an important step in my rehabilitation and my eventual return home. For that reason, I’m thrilled. (Also, it’s 15 minutes from my home and many of my friends…which means reconnecting with my crew without them having to drive!)

I can’t thank all of you enough for your support during this process. You’ve visited, donated generously, sent art that you or your children have made, sent books, candy, and other awesomely ridiculous items. I’m so grateful to have a network of incredible people in my life – and honestly, I don’t even know all of you. So, thank you.

On to the next step….

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.

 
 
 
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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.) 

Musings on vulnerability

I’ve been thinking a lot about vulnerability recently. Bear with me…it’s a bit wandering…and maybe I’m conflating vulnerability and autonomy, or vulnerability and fear – or maybe they’re all interwoven for me.

Vulnerability has gotten a lot of play in the business and social psychology worlds recently. But vulnerability can be at odds with how many of us grew up – maybe we were taught to put on a strong face or not to show emotion in public or not to ask for help in a moment of need. The research and literature, however, suggest that showing vulnerability (or being vulnerable) actually has a positive effect. Do some googling … but a good starting point could be this HBR article from a few years ago. This gist is this: “Only presenting an idealized version of ourselves separates us from others. The mistaken assumption is that if people find out who we really are underneath, they’d remove themselves from our lives. The reality is that if we share the ups and downs of our human experience in the right way in the right context, we build deeper connections.” Some others from Dr. Brené Brown are here and here.

During my last few years working in the business world, I tried hard to put this into action. I tried to say “I don’t know” much sooner than I used to, and relied on my awesome team to come up with solutions more frequently. When we tackled hard projects, I would kick off big group meetings by acknowledging that I had no idea what I was doing, only what our goal was, and that I would need to rely on the experts around the table to achieve our goal. It honestly felt good – and when we achieved a task, it was not disingenuous to tell people that without them we wouldn’t have succeeded.

Of course, it’s also hard for someone like me. If you know me, you know that I like to feel in control of the things around me. I don’t necessarily need to control them (some of you don’t believe that) – but I need to feel like I can control them, if push comes to shove or shit hits the fan. I need to know enough about everything so that I can jump in and direct or modify or execute. The emergency department is a bit like that. My job in the emergency department is to be the calm voice with the answers, in control of my zone or the whole department, managing flow and resource allocation. I need to know enough about what’s happening that if there is a sudden change I can switch into command and control mode and execute.

But at the same time, I have to be able to admit when things are out of my control. That happens all the time in medicine. People don’t really like to hear “I don’t know” when they’re sick or when a loved one is dying. I remember as a chief resident at Stanford, my fellow chiefs and I sat the new interns down and told them that the most important thing that they needed to learn was to have the confidence to say “I don’t know.” Their inability to do that – and their choice instead to answer incorrectly, answer a question that wasn’t asked, or to make up data – could harm or kill a patient. So saying “I don’t know” and making yourself vulnerable is incredibly uncomfortable and can make you feel weak and unintelligent … but may be the safest thing for the patient.

The truth is, though, that I don’t like feeling vulnerable. I don’t like – actually, I hate – asking for help. Hate. And yet, here I am, at a point in my life where what I need to do most is ask for help. It makes me incredibly uncomfortable. Sometimes I need help getting dressed in the morning. Or putting my coat on. Or picking something up when I drop it (which I do – a lot). I feel incapable of helping my family prepare dinner at night because there’s not much I can do with taking hot food from the kitchen to the room we eat in. My mom does my laundry again. Oh, and sometimes after a good solid physical therapy workout I poop on myself and need the nurses to help clean me up. I’m 36. I’ve traveled to something like 62 countries. And have had multiple successful careers. And now I need someone else to clean up my shit. There’s no more vulnerable feeling than that. My parents tell me that maybe I shouldn’t share so much, that not everyone needs to know every detail. And while that’s totally true (yes, mom and dad are right once again), I keep coming back to this: “Only presenting an idealized version of ourselves separates us from others.”

I no longer have control of many of the things around me. I have control of some of them. The harder I work, the more control I will have over more things. I won’t need to rely on people to do things for me. I won’t need someone to watch when I transfer from a wheelchair to a couch. Or to watch me in the shower when I try to wash my legs (it’s scary leaning that far over with soapy hands!). The more things I can do, the more autonomy I will have, and the less vulnerable I will feel. I’m honest about my vulnerability because if I’m not, then I’m not being authentic. Because of my vulnerability, I’m comfortable asking the therapists to push me harder. I’m comfortable telling people about my bad days. And I’m (getting) more comfortable letting people see all parts of me, and talking about the things that scare me in the future. But the reality is that I will – for the rest of my life – be somewhat at the mercy of others. And I’m going to need to learn to ask for help.

Getting comfy in bed

One of the most difficult things I've been working on is "bed mobility." In other words, how do you move in bed.  When most people sleep they move around a bit at night. This is obviously comfort related, but it also removes pressure from certain points -- shoulders, hips, knees, and ankles. Sometimes you know its time to move because you're antsy or because your hip has started to hurt.  For me, I wont know that it's time to move because I wont feel that hip pain -- and the risk for people who are paralyzed is skin damage.  Skin lesions are one of the major causes of injury -- they often lead to infections and sometimes require plastic surgery repair. So the summary of this is -- I've got to figure out how to move around in bed.  It apparently will become second nature (or I'll set an alarm) ....in the meantime, I've been working with my occupational therapist to get better at moving in bed. Historically, I've slept on my right side. (By the way... amazing how quickly you forget what you used to do, or positions that used to be comfortable!) So I've been working on positioning myself on the mat and also in the bed.  Of course it's way different in clothes and without blankets and in the middle of the day. This is easily one of the most challenging things I'm doing right now. Once the TLSO brace is off and I can sit up and rotate more it'll apparently be easier, but I've had to figure out how to pull my legs up and shove a pillow between them, even when i'm in a stupor in the middle of the night. Seriously, figuring out how to lever my leg to get a pillow between them....not easy.  I've tried to be more disciplined about not letting the nurses position me when its time to get to bed or reposition in the middle of the night. But this is my current struggle.  Bet you never thought how to position yourself at night, did you?!

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. 

Daniel's Second Post

Sunday. Four days ago. Feels like an eternity. The only rational thing to do after an experience like Sunday's is to go out the next day and attack the exact same problem. Maybe not the only rational thing to do, but at least a pretty logical thing to do from my wheelchair-positioned point of you view. Got to get better, and the only way to do that is to try again. On Monday I asked one of the staff members here who spends a lot of time on helping people master daily activities to go out on a walk with me. I told him about where I was struggling with the wheelchair, our death-defying experience, and what I found difficult. He was all over it. We spent an hour at the end of the day wheeling around outside of the hospital. Through parking lots, across sidewalks, up ramps (with a bit of a helpful push), down the ramps (still scary!), across crosswalks, and naturally the crosswalk where I got stuck. It was awesome. Huge new confidence boost, exactly what I needed the day after that other crap.  I learned a few new skills and felt much better about myself.

On Tuesday we did A bit more of the same. We went across the street to a hotel to check out its wheelchair accessible rooms. Had to figure out how to get in and out of doors and across the street and I went with the same gentleman and my father. For dad it was a night and day difference. It looked like I have made significant progress in wheelchair maneuvering in 48 hours,  but the reality was that I just gained some confidence and learned a few new tricks.

Today, Wednesday, was an out trip.  I got into a wheelchair-accessible taxi with the gentleman from the clinic and met my parents at a local nature reserve. My mom  got to see the benefit of the last several days of work and growth in confidence. I probably didn't go more than a third of a mile, but it was nice going over some paths and enjoying the fresh air of nature.  It was chilly ... not quite glove weather (see the gloves - their bike gloves with gel to protect the hands - increasingly essential outside with the wheelchair handgrip burning up my hands!).

The summary here is this: As previously described, Sunday sucked for an hour and a half. I took the lessons from that and attacked them for the next three days. I'm improving. I could throw some cheesy quote in here about getting back up after you fall down, but the reality is that I'm just being rational. I have no choice but to work harder and figure it out.

I got a bunch of comments for my first post, the first time I had really written anything related to this accident or the hospitalization. I'm not the best blogger, mostly because I don't dedicate time to do it. But thank you all of you who wrote a comment or sent me a text or an email. Thanks all of you for supporting me through this "stage in life." I've heard from people far and wide, fox I haven't talked to in years, folks I don't know, people I didn't think I'd hear from again. It's incredible. It's OK not to know what to say or write or how to "do something to help." It's OK not to know how to ask how I'm doing. What matters is that you took the time to say something, anything. Thank you.

 
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Daniel's First Post (Day 36)

It turns out that every day can't be rainbows and unicorns. Parts of today sucked. I got a new wheelchair the other day. A demo one, one to try out while I decide if I want something similar (but clearly more designed for my tall frame) for my "real" chair.  This one is pretty sleek, there are no leg rests and my feet fall under me a bit. It's more aggressive and I sit it a bit more of an angle, though not as much as those badasses that you see all bunched in their manual wheelchairs. It was 75° here in Rochester Minnesota so my parents and I decided to go out for a "walk." This is basically my first time out of the hospital powering my own wheelchair.  On previous trips, I've had other people pushing me for a variety of reasons, but in this case with the wheelchair that should be able to clear most curbs and no push bars, I was a bit on my own. It was, to say the least, a harrowing experience.

It turns out that I freaked out going down curbs, the "cut curbs" where there's a downward ramp into the street. It's hard to describe, but because I don't like going down the hill I try to slow down my progress. The result is that I don't have enough momentum for the front wheels/casters on the wheelchair to get over the bump into the road. I feel like I'm flying forward and will fly out of my wheelchair when that happens, which is obviously not a particularly enjoyable experience. I definitely got stuck in an intersection between going down the curb and entering the crosswalk. I imagine the cars waiting felt a bit bad for me, but it was a pretty crappy experience. It took us about an hour to get around the city block. 

A month ago (before my accident) an uneven sidewalk or crack wouldn't faze me. I wouldn't have noticed it. But today too large of a crack caused me to lose my balance and almost freaked out.  Even the slight gradient on the sidewalk, presumably to drain precipitation, means that I have to constantly battle with my uphill hand to maintain some tension so I don't go downhill. That same sidewalk looked perfectly flat to me before. My mom commented that this was the most frustrated she's ever seen me in this new life. I suspect she's correct. I put on a pretty strong face, but today it sucked. My mom wonders if it's always going to be like that. Difficulty navigating sidewalks, getting down curbs, an hour to get around the block. I told her the answer is no, but let's be honest, I don't really know. I just assume it's gonna get better because how the hell can't it...


But here's the thing. I came back, I took a nap, and when I woke up my wonderful friends were here. I am amazed by my friends. They're constantly by my side. They love me unconditionally. My godchildren and my nieces are going to grow up not remembering me in any other way than in the wheelchair. On one hand, that's devastatingly sad. On the other hand, I know this will leave them more compassionate and I hope more generous.


I put on a pretty good face. 98% of the time it's real. I'm not overwhelmingly sad. I'm sad, but it comes and goes. I'm frustrated, but it comes and goes. I think about the small victories like getting my butt in and out of a car for the first time. Maybe I'm trying to hard to protect those whom I love from any semblance of defeat.  I don't want my parents to feel my sadness. The reality is that the wider range of emotions is real, and acknowledging them, being vulnerable, that's OK.

Today sucked. For about an hour and a half. I can't say the whole day sucked. I ended the day surrounded by friends after a wonderful homemade dinner, drinking tea, shooting the shit, I'm doing the same thing that we would be doing if were in my home or a restaurant or the bar. I love that my friends and my parents are integrating. It takes them back to high school when my friends used to sit around at my house after dinner for hours just hang out with my parents. I'm sure in our close quarters for the next few months we will have some frustrations, but at the end of the day I realize that I'm luckier than hell to be surrounded by family and friends whom I love dearly and who love me. I'll figure out the wheelchair. Ultimately, that's not what matters in life.

Day 31

A month of hard work and progress has led to this:


None of us can believe it has been a month since the accident.  A month since each of us got that call that took our breath away and sank like a pit into our stomach in the same instant.  Every aspect of Daniel's life has changed irrevocably.  Day by day, however, he continues to work tirelessly to reclaim another fragment of his independence.  

Opening a car door and transferring into the passenger seat has become Daniel's newest victory.


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Days 22-24

First dose of reality....

Daniel got his first dose of reality - navigating his new life with disability.  The amazing rehab folks at Mayo took Daniel out on his first ride on a Rochester city bus.  Here were his thoughts: 

  • Everyone was looking at him - made him very self conscious

  • He felt guilty about making everyone on the bus wait for him

  • The profound loss of independence was most apparent when the bus driver had get out of his seat to strap Daniel's wheelchair in place

  • Life is simply not designed for people with disabilities 


Busy weekend!  

In addition to Mom and Dad who have been by his side since the accident, Daniel’s brother Aaron came for a several-day visit along with his family (wife Charnella, 18 month old Kenna, 9 week old Elise and Charnella’s father Norm).   Nic Kanaan, co-resident from Stanford Emergency Medicine also came to stay for a few days.  Aunt Susan and Uncle Billy brought frozen Lou Malnati's pizza - Fantastic.  And the always present crew of Ron & June, Ro & Holly, Heidi.  Rock stars, all of them! 

Here are some pics and videos from the weekend.

 
 

Daniel and Kenna hanging out in the Rehab Gym (more later on this bicycle-like contraption in the post "Thoughts on DBGs recovery by a great friend")

 
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Daniel, Aaron, Charnella, Kenna and Elise

 
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Some of the Mayo Emergency Department nurses came upstairs to visit Daniel, and brought his favorite work snack - Sour Patch Kids.  

 
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"Workin' on my fitness..." 

 
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Thoughts on DBG's Recovery by a great friend

Nic Kanaan's insights on Daniel's ongoing rehab

FES Biking

Today Daniel did something quite remarkable.  When you see the video you probably will rub your eyes in disbelief.  I certainly did.  Today daniel was hooked up to a nerve stimulator, with patches that stimulate the quadriceps, hamstrings, and calf muscle groups.  He was then placed on a recumbent bicycle (Functional Electric Stimulation Bike). The electrical stimulators were then hooked to a computer that pulsated electrical signals to the muscle groups in quick succession allowing for a flow-like state of contractions that resulted in him not just riding a bike, but doing so fluidly for 4 miles.  The point of this exercise is to keep his lower extremity muscles engaged to reduce spasticity.  It is a bit magical to watch, and surreal.  And although it is not him powering his muscles through his spinal cord, it is a really amazing feat to view.  

 
 

Therapy every day

I can’t tell you how amazing it is to watch as Daniel continues to work hard and see the results of his efforts.  He is gaining more upper body strength on a daily basis.  With each PT/OT session he increases his abilities to lift and position his body without the use of his legs.  Watching has been quite a humbling experience, as you never think of how hard simple things in life can be when you can only use the upper ½ of your body.  Every transfer to and from his wheelchair is subsequently better than the previous.  His muscles still fatigue at the end of therapy, but every day is able to do more than the day before. He is actually getting "swolliosis" (i.e. Strengthening the hell outta his back and shoulders).  He is figuring out the physics, balance, and strength required to move himself around - and that is actually really exciting to see. His spirits are really high, and he doesn't seem to be sad or frustrated by any aspect of the injury or situation. He is smiling and laughing every day. He is giving the nurses a hard time as per usual, and giving constructive feedback and advice to the residents when they round. 

 
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Trigonometry, levers, ergonomics, balance, and mechanical advantage 

These are the new realities that Daniel is becoming keenly aware of.  To sit up in bed without the use of abdominal or lower back muscles is incredibly difficult.  You realize that if you tilt your head just a few centimeters back and you can find a balanced position, but too far backwards and you’ll quickly and unintentionally be horizontal again.  For example, if you bend your knee in bed you can achieve extra leverage at the knee.  Get both legs square on the ground and you can translate your weight of your arms and shoulders down through them to the ground.  Move your legs wider apart and become more of a stable tripod position.  Lean too far backwards in your wheelchair and your arms become inefficient at wheeling forward.  Simply stated, the physics of movement have become ever present, and so much more necessary to understand and utilize in daily movements. This is Daniel’s new reality, and he will be the first to tell you that he is fascinated to be slowly learning how to take advantage and optimize all of this.

 
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TLSO Brace 

The chest and back brace that Daniel is wearing is called a TLSO brace.  It is designed specifically for him and molded to his body.  Its utility is to protect his thoracic spine from damage or re-injury after his spine decompression and stabilization surgery (although there are screws fusing his spine where it was broken, the bone is not yet stable).  It acts similar to a cast for the spine.  He doesn’t have to wear it when he sleeps, but otherwise this chest piece is a piece of him until December when it can come off.  It makes a lot of movements a bit more difficult due to the inability to curve or bend about the spine.  Daniel keeps joking that he wants to get a sharpie and get “THUG LIFE” written in old english on his chestplate.  I think its a pretty damn good idea.

 
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Hanging around.

This is where amusement park ride meets medical care.  Daniel has a motorized lift that connects to the webbing straps on a fabric chair.  With a hand-held controller he can raise it up and down, suspend himself in the air, and then glide along a series of tracks on the ceiling of his room that will take him anywhere he wants to go.  Its particularly helpful to get him to the bathroom and shower.  And as a bonus, when he cranks himself up as high as it gets - he and I are finally eye to eye.      

 
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Standing room only.

Here is Daniel on the standing machine.  It blocks his legs from moving and then ratchets his hips up into standing position.  The idea is to get the body used to swings in blood volume from the upper body to the lower extremities, as well as stimulate the bones with his axial skeletal forces against gravity in order to promote bone strength. Due to his poor lower extremity autonomic regulation (vascular tone is maintained by sympathetic nerves which are disrupted in the injury, so his lower extremities do not modulate blood flow and pressure effectively anymore), this is also the machine that normally results in hypotension, tachycardia and seeing spots. But somehow today he had none of those symptoms, even after 30 minutes of standing!  So thats some pretty good news.

 
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Another Day, Another Lesson.

Funny story here.  Today the nurse came in to give a flu shot and asked Daniel where he wanted the shot. Reflexively and without thinking he pointed to his non-dominant arm and said “left deltoid please”.  I interrupted him, “Are you sure Daniel?”, to which he replied, “yeah, that’s where I always get it”.  The nurse then pointed out that the thigh would probably be a more comfortable place to get the shot.  You see one of the small benefits of this situation is that now Daniel gets to have the benefit of the flu shot without feeling the needle or the sensation the next day like someone punched you. Cherish the small victories. 


First days of Acute Inpatient Rehab at the Mayo Clinic

Day 9: First Day of Rehab

Today (9/12/17) was Daniel’s first day starting therapy in earnest at Mayo.  Lots to learn.  First of all, Daniel has to learn how to sit up.  He has lost feeling and core strength along the abdomen and below.  When you lose sensation, you can’t tell where your body is in space.  Daniel is having to re-train his body to understand based on visual and head position cues how upright he is sitting, while he learns to use his arms to walk forward from a lying to a sitting position.  The amount of upper body and core strength this requires is substantial. 

He’s learning to turn himself while lying in bed.  This entails manually pulling his knee up a bit, and then swinging his arm over to the side bed rail, then pulling himself over.  He still can't put his brace on by himself (probably gonna take a while until he can do that alone, if ever, but he only has to wear it for 3 months...).  

Day 14: Daniel has made incredible progress!  The hypotension (low blood pressure) is much less of an issue.  It's still helpful to wrap his legs to keep the blood in his core, but at least he can sit up in his chair and wheel himself around a bit.  Today he went out to the courtyard on the Mayo Rehab floor and shot a few baskets. I wish I could tell you that his post-injury field goal % was 100%, but it’s a whole new skill set to shoot baskets from a wheelchair…  Here’s what success looks like! 

 
 

Day 5: Daniel's first transfers into a wheelchair

Someday, Daniel will look back on these videos and recall how difficult these very first transfers into a wheelchair were.  Only 5 days after his accident, these videos show how he needed two people to help him sit up and get into the chair for the first time.  You can tell that he doesn't know how to navigate his new body yet.   We're now on Day 25, and he still doesn't.  But he's learning, and he's making incredible progress!!  

 
 

Day 5 after his accident, still at North Memorial Hospital, Daniel's amazing physical therapist Paul and nurse Nell helped Daniel out of bed and into a wheelchair for the first time.  

 
 


After his first physical therapy session, Paul helped him back into his wheelchair. Quite the struggle initially...