I know I’m verbose because I don’t even like reading all that I’ve written sometimes. Keeping this in mind, I’m going to give a high level summary of my three months in Germany. If you give me the time of day, this is what I’ll tell you when you ask about Germany.
I want to write a continuation of part 3 with much more detail, but that’ll take longer. So here you have a summary of the entire 3 months.
Once I got to Germany, my mom picked me up from the airport and we used public transit to get to the hotel. My first injection would be delayed by one day, relieving none of my anxiety. I didn’t know what to expect, which is daunting for a lumbar puncture. The injection went swimmingly and a few days later I was on my way to Bochum – a medium town that has so little tourism it gives you the feeling that you’re really seeing Germany and how the people live. Getting to the Airbnb wasn’t hard, but getting in was very difficult. There are 3 steps to get into the building and some random people off the street had to help my mom and I get me up. I knew about the stairs, and you’d believe me that it was the best option. All the hotels were far too expensive and all of the airbnbs had steps or some type of obstacle. I messaged the owner of this airbnb and he was beyond helpful – sending me pictures of the doorways with their dimensions and after my arrival getting a piece of plywood that I used as a ramp for the remainder of my time in Germany. This really was the best option.
The reason I went to Bochum is because that’s where Cyberdyne is located. I won’t go into the details of how the physical (physio) therapy industry is entirely other, but trust me, it’s different. At Cyberdyne, they offer an exoskeleton designed for walking-recovery. Cyberdyne is recommended by Anova (where I got my stem cells). They are very far from one another. Some days the trip from Bochum to Frankfurt was 3 hours and other days 11 hours. Still, much better than navigating the beast of the physical therapy industry. The exoskeleton moves only when given signals that come from electrodes placed on the hips, glutes, hamstrings, and quadriceps. The first day I went in was an evaluation to see if I can use the exoskeleton (called HAL). I did not qualify. I had NO signals. What made this difficult is that I had my Airbnb for 3 months in Bochum, an otherwise uninteresting city with limited options for physical therapy. There was no way of knowing I wouldn’t have signals and honestly I learned my lesson about hubris. It never occurred to me that I wouldn’t qualify. In most things I’ve been exceptional and lucky. I learned my lesson.
For the next month I tried to figure something out and I felt for the first time what it’s like for people who struggle to get things done as days become weeks. For the first time, I really really felt a loss of motivation. Luckily, Cyberdyne reached out to me about an opportunity to come back and try something new to everyone. Connect the electrodes to my arms, move the robot, and get the walking motion. Cyberdyne is a Japanese company, and from some part of Asia there was a case study showing the possible efficacy of using arms to get signals to appear in the legs. We gave it a go. It was hard to get the rhythm but after a few weeks I figured it out.
A few weeks later, when doing a routine leg-signal-check, we found that the signals were good enough to start connecting the electrodes to my legs. This was an important moment for the obvious reason, but it was even more important for the not obvious but easily understandable reason of my mental health. At this exact moment, I didn’t believe that anything would happen. In fact, my thought was this “we’re about to test my leg signals and prove that there is no case study efficacy because this just isn’t going to work.” And then it worked. I would’ve liked to have a positive mindset and I’m not confident you’ll understand how I felt exactly, but it wasn’t a good feeling to do so much, go so far, and have objectively made no progress. But now there was progress and I felt better. I wanted more, so I couldn’t say I was ecstatic because it almost felt like too little too late, but I didn’t look my gift horse in the mouth.
I admit, a lot of the signals came from my hips, which had a lot of movement from my abs/obliques. Whatever, who cares, it’s a start. I was able to get the exoskeleton to walk pretty well. Over time the signals got stronger, mainly my hips and my hamstrings. This meant that I could lift my foot to move it forward but the extension of my leg (coming from signals in my quadriceps) was not so good. My leg still extended, but I’m not sure if the movement came from the momentum of my leg/hip swinging forward, OR maybe the signals were very very small. Either way, once my leg came forward, it did not stay straight, so I couldn’t put any weight on my feet. There were two milestones while using my legs that are of significance. Using A1 for signal detection and walking at a speed of 1 km/hr for a few minutes. The signal detection is B10 the worst (what we tested in the beginning) then B5 B2 B1 A10 A5 A2 A1. A1 being the best/most ideal.
Objectively, there was progress because we lowered the signal from A10 to A1. This is as far as I got before coming home. Now that I’m home, I’m doing physical therapy three days a week, maybe four. The physical therapy I’m doing is at NeuAbility, which sends electrical signals to my legs instead of receiving them. This means my muscles are contracting, whereas at Cyberdyne my muscles didn’t contract. Cyberdyne can be thought of as ‘active’ because it’s based on signals coming from me, and NeuAbility is passive because if I were to not focus on my leg moving, the muscle would still contract. Now we’re trying to think about how to measure progress. What objective and measurable thing can we do to track progress? No clue. This is only important until I gain motor control. Once I can move some part of my leg, then we just measure that and hope to watch more muscles move over time.
This is the end of the abridged story of my time in Germany, focused solely on the medical side of things. Of course a lot more happened, some of it I can’t tell you, some of it I will.
Thoughts:
The big question I’m asking myself is how long do I go without seeing progress until throwing in the towel? And then I’ll keep going for a month just to be sure (exhibit A: when I nearly gave up with Cyberdyne). If I see progress, linear or exponential, the time it takes is not an issue. But I need to see progress. I also want to do many other things in life, I wont hesitate to throw in the towel, accept my fate and go on with the rest of my life. It would be silly of me to cancel my plans to live abroad because I want to keep doing physical therapy despite not seeing progress for a year (for example).
Overall, I think it was good. I don’t regret doing it. I wish I could’ve done it sooner. I will admit that although it was good overall, I had more than my fair share in beatings. Mental guerrilla warfare. Many battles were lost and the war isn’t over. I am hopeful, I am optimistic, I think there’s a good chance I will walk again and I’m coming back swinging. I am the man in the arena.
But just because I’m hopeful and coming back with fervor doesn’t mean I don’t struggle immensely. I’ve always had a plan for my life but I stopped planning after stem cell, I just didn’t know what would happen. And now, in addition to the hardships endured using a wheelchair, I’m also confronted with the struggles that everyone has. You know, the purpose of life stuff, it’s not easy because if I want to move a mountain one stone at a time, I need to find the mountain and then the stones.
Walking will make my life so much better. I’m working on it.
Wheelchair DNA 