On January 5th, 2013, I had a spinal cord injury that has left me a paraplegic. This blog entry is a continuation of my journey toward recovery.
January 27th, 2013:
I woke up about 5:30 this morning because my legs felt different. It's hard to describe, but they feel a little "more normal", like they have a little more normal sensation than before. Since I had tears in my eyes, the nurse asked "what's wrong", and I told her about this feeling. She said "that's good, isn't it?" GOOD?! IT'S AMAZING!
Some homework for those of you reading this blog: Touch your leg. Just touch your finger to your thigh, feel it, and think about it. It's different from when another person touches you, or when a thing touches you. There's a certain special warmth to it, a certain feedback loop since both your leg and your finger are feeling each other at once. It's a special thing that you don't think about every day. Mine doesn’t feel the same. My leg feeling isn’t as strong as my finger feeling. But today it feels closer to normal than it did yesterday, and I'm celebrating it!
Today's therapy mainly involved moving my body around a mat with my arms, and practicing getting in and out of my wheelchair. I have a long way to go on both skills, but I certainly am getting better at it. I daydream of the day when I can get in/out of the chair by myself. That would give me so much more independence.
Because I noticed better feelings in my legs this morning (albeit, they still have a very long way to go, too) I didn't get as much sleep as usual last night, and so as the day goes on I’m extremely tired. Despite this, though, it's been a good day. Tracy and Alex (my wife and son) spent the afternoon with me, and Alex made some awesome decorations for my walls. I've also been hanging up birthday cards (my birthday is tomorrow.) The room's looking pretty cheery!
January 28th, 2013:
The best day of your life is the one on which you decide your life is your own. No apologies or excuses. No one to lean on, rely on, or blame. The gift is yours - it is an amazing journey - and you alone are responsible for the quality of it. Enjoy your life 110%, because you only get one.
Today is my birthday, and my legs are feeling stronger today. I could only twitch them a little bit before, but now I can noticeably wiggle them. They aren’t strong enough to lift up against gravity, but I can definitely move them.
I told my physical therapist, and she decided to let me ride a “bike” (of sorts.) The idea is that there’s a set of pedals that you can pull your wheelchair up to. They strap your feet to the pedals, and the bike is able to measure your movement. If you need the help, the bike will pull your legs to help get them going, but when you’re able to pedal yourself, it stops helping you, or even adds resistance as needed to strengthen your legs.
So I’m hooked up and pedaling away and enjoying this feeling, but I’m sure the bike is doing most of the work. So I asked the therapist how much of the work is me, and how much is the bike. She hits a button, and says “It’s you. The bike isn’t helping.” WHAT? Tears welled up in my eyes, I couldn’t believe it! How did I go from a twitch to being able to ride a bike? This was a great birthday present. Here’s a picture of me pedaling:
Another thing they tried was standing me up in the lift pictured below. This big hoist machine holds me up so that my legs are able to feel the right feelings for standing. Standing made me dizzy quickly, but it was still quite incredible to feel like I was standing again. Another birthday present for me!
After therapy, my wife and son celebrated my birthday by bringing me some birthday doughnuts. And a bit later, I had a whole bunch of visitors. My close friend, Carl, stopped by, as well as my brother in law, Dean, my sister in law, Krista, and my nephew, Zach, who helped make my birthday extra sweet by bringing a cupcake for me! The biggest surprise was a visit from fellow IBM i expert/speaker/evangelist, Trevor Perry. Wow! I can't believe he showed up! He doesn't live locally, but just happened to be in northern Illinois tonight, so he stopped by. I never would've expected it in a million years!
January 29th, 2013:
Today was another good day. I GOT ANOTHER SHOWER! It was wonderful. I've also matched or beaten my therapists’ and nurses’ expectations on taking care of myself. I got to ride the bike again, and do exercises to move around on a gym mat (using my arms) as well as weight training to strengthen my arms.
So, the day has been great! Though, I'm really tired.
Every Tuesday we have a staff meeting where all of my "team" gets together to talk to me about progress. This involves doctors, psychologists, nurses, therapists, social workers, and more. We had a good meeting, and they said many nice things. They estimate that I will be in the hospital for another 3-4 weeks from today.
I also discovered that my co-workers had made me a wonderful birthday video. Perhaps you can see why I love working for Profound Logic. What a great team!! They actually sent the video yesterday (my birthday), but I didn't discover it until this morning. Now I'm showing it to everyone! :-)
Make sure you watch long enough to see Alex’s dance at the end!
January 30th, 2013:
Today, my first mission was to get dressed in the gym (rather than my hospital bed with it’s hydraulic help.) I decided to go at this with full gusto. The night before, I got my clothes out of the closet and put them in my backpack. This is a challenge from a wheelchair. I had to use a long stick/grabber thing ("reacher") to get the hangers down from the closet, bring them to my body, and then I hung them back up. Mind you, they didn't expect me to do this myself. They figured I'd ask the nurses to get my clothes ready, but I didn't. I did it myself. I'm very determined to be independent, and I was 100% successful.
Morning time came, and I went down to the gym in my hospital gown. They pulled a curtain around a gym mat, and I used my arm strength to pull myself into a sitting position. Sitting cross-legged, I put my clothes on by myself, with no help from the hospital bed. The therapist was very impressed. She expected me to struggle more, but I’m so limber from all the workouts that I can reach my arms over my feet and put stuff on. If you can do that, you’ve already won the battle.
I did a lot of weight and balance training today. One thing you don't realize is how much of your balance comes from muscles below the waist, including legs, thighs, stomach, etc. We did a lot of work with these (since they are all very weak in my body right now) and I did very well. Every day I feel these "trunk muscles" getting better and stronger, and it's a wonderful feeling.
We played a game called "forward line" where you shoot a red/white thing (looks like a buoy) down a zip line of sorts. It involves two lines/cables in the middle that you pull apart with your arms while keeping tension on the lines, and it shoots down the line to the other side, where someone (my therapist) then yanks her side apart to shoot it back. The therapist said it'd be really challenging for me but it wasn't, it was easy. In fact, she was getting tired, and I wasn't.
I also got to ride the pedal bike again. This time, there was increased resistance (level 2) on the pedals. I went for 12 minutes, and covered 1.15 km. Not far for a "normal' person, but for me? It was great.
I'm getting so much stronger and better every day, that for the first time, the doctor said that he's confident I'll be able to stand and walk again. No, he doesn't guarantee that, but other times he just said "there's a good chance", like it was a 50% chance. Today he was much more confident. YOU HAVE NO IDEA WHAT THAT FELT LIKE.
January 31st, 2013:
Today was another great day. I did well in all of my therapy sessions, and I'm continuing to show improvement. I think many people who are thinking of their own hospital stays think that I spend a lot of time sitting in bed. Many people have said things like "You can catch up with your soaps!" or "I can bring you movies to watch." Those are great sentiments, but I just don't have time. Let me show you what my schedule was today:
6:30-7:00 -- medication, some other medical stuff, and breakfast.
7:00-7:15 -- shaving, brushing teeth.
7:15-7:30 -- was able to briefly log on to check e-mail.
7:30-8:15 -- sponge bath.
8:15-9:00 -- more medical stuff, getting partially dressed, meetings with doctors and staff... all chaotic, because you never know when the docs and other staff will pop in.
9:00-10:00 -- Occupational Therapy. Went down to the gym to get the rest of the way dressed, since the gym mats are more similar to what I'd have to do at home (vs hospital bed.) Also some exercises and weight training.
10:00-10:30 -- my break! But, I had to do some medication, vitals, and make sure my lunch got pre-ordered during this time (lunch delivery can take an hour, so if I don't pre-order it, I won't have time to eat on my lunch break.)
10:30-11:00 -- Therapeutic Recreation.
11:00-12:00 -- Physical Therapy -- this ran a little late, and I got back to my room at 12:10.
12:10 - 1:00 -- My Lunch break. Though, hospital staff also needed to talk to me, so I spent about 30 minutes talking to them while I ate lunch. There's also medication and other medical stuff I had to fit in, here.
1:00-1:30 -- Physical Therapy again.
1:30-2:00 -- Occupational Therapy
It was great to see my brother in law, Kevin, and his wife, Mia, during the afternoon therapy, and they stood and encouraged me, saying "way to go", and helping keep count. It really helped me keep going, because I was getting tired by that time. Afterward, they stayed and visited for awhile. I'm soooooooo lucky to have such a wonderful, supportive family!
After that, I started packing up my clothes for tomorrow, so I'd be ready for another full day. And finally, now I've logged on to Facebook, will check my e-mail, and stuff like that. Anyone who knows me well knows that I really like to keep busy, and won't be too surprised that I'm enjoying this schedule.
Tonight I'm expecting a bunch of my closest friends to stop by and play cards. I've been looking forward to that all week. It's going to be a really fun time!
February 1st, 2013:
As bizarre as it might sound, it turns out there may be some value to sleep. Yeah, yeah, listen for a minute. I went to bed last night at 10:30pm. Okay, for some of you that's not early, but it is for me. I slept well, waking up at 4:45am. Now, I didn't want to wake up that early, so I tried to get back to sleep, but couldn't. I wasn't tired. At 5:15, I gave up.
My friends came by last night and we played cards. This was GREAT fun for me. My friend Nate left me a copy of The Onion, which was fun to read, but I was too tired after the card game. But this morning? I felt good. I felt powerful. I decided I didn't need a hydraulic bed to sit up and read. I sat myself up, using my arm strength, so I was "circle sitting" (sitting cross-legged) on the bed, and read The Onion.
Then I thought to myself, I wonder if I can do the same thing, set up my PC, etc., entirely on my own body power? Turns out, I can. Hello, Internet!
February 2nd, 2013:
For some reason, I could not sleep this morning. I was up at 3:45am, and could not fall back to sleep. The result was that I was really tired today! I MEAN REALLY TIRED. Thankfully, it was also my day off from therapy this weekend, so I was able to relax. My wife and son came in, and I spent a lot of the day playing darts, pool, air hockey, and card games with my son, Alex. All of these games are a bigger challenge when you’re in a wheelchair, but we still played.
At dinner time, my brother Tim and his fiancee Cree surprised me by joining us for dinner. They drove all the way from Stevens Point, WI, just because they craved hospital food. :-)
Unfortunately, I wasn't very good company, I kept dozing off because I was so tired.