I always worked hard towards my goal: to get as well as possible and be independent again. I remember making a vow to myself that if I were never able to walk or speak again; or that if I were going to be permanently shaky and uncoordinated on my left side, I did not want to look back at this relatively brief period of time for rapid recovery and have regrets. I didn’t want to have to look back at myself and say “I should have tried harder.” So I worked (and still work) hard everyday towards my recovery.

I would go on walks with my walker with my mom to the end of the block and back at first. Then I would go on walks with Peter when he’d come (three times a week) and I would practice occupational therapy homework that Phil gave me. After weeks of almost constant effort, I got to the point where I could bring my wrist all the way up, but my fingers wouldn’t extend. I ordered a device for exercising the extension of my fingers. It is a device is called the Cando Digi-Extend Hand Exerciser and it has grooves for each finger and has a rubber band that wraps around the tops of the fingers to provide resistance when extending fingers. I attempted to extend my fingers one at a time several times a day.

On August 6th I was in the apartment working on utilizing my hand and attempting to extend my fingers when I had to go to the bathroom. I used my walker for support as I walked to the bathroom as I had been doing since I got to the point of using a walker. I set the walker aside and held onto the frame that we had fitted over the toilet, turned around and sat down to pee as I had done since not having a catheter.

I walked back to the couch, determined and extremely preoccupied (obsessed actually!) with getting my fingers to extend. While wrestling with my own hand’s lack of ability, my mother walked into the living room and after a minute or so she looked at me with her jaw dropped and said “Oh my god! Where’s your walker?” She had pure fear in her eyes. I felt like I had done something wrong. I don’t like upsetting my mom.

I suddenly realized that I had walked from the bathroom to the living room without a walker! I just forgot about it and walked. I didn’t think about my disability, but thought about what my next move was, in this case extending my fingers again.

My mother and I were both in awe. I decided to try to walk back to the bathroom to get my walker. I walked pretty goofy, but I made it to my walker. I walked back to the couch and left my walker and continued to walk on my own while while my mother filmed me.

It was like a baby learning how to walk, only a fall for me would have been far more devastating. The fact is that the part of my brain that coordinated my body to walk was and is damaged. This means that not only did I have to re-learn how to walk, but I needed to create new connections and bypass the old connections that were now destroyed. Everything relating to motor skills that had been damaged needed to have new connections made.

I had lost 35 pounds and lots of muscle mass but had finally gotten barely strong enough to stand on my own, and now I needed to create new connections and build muscle memory to learn how to coordinate walking.

But this also meant that I had to be sure to walk properly so I wouldn’t build the wrong kind of muscle memory, because the brain and body will take the path of least resistance and just compensate for its losses and weaknesses. I have to consciously force it to build proper memory. This is critical so it takes a lot of patience ,concentration, and determination (and a mirror!!). I’ve been working on making sure that I develop good form in all my various rehabs. Doing it wrong can be worse than not doing it at all. Its like my master in Taekwondo used to say when I was a kid “PERFECT practice makes perfect.” This is how the brain works. As they say in neurology “neurons that fire together wire together.” This rehab stuff is a lot more sophisticated than I first realized… but of course it is. It has given me much more appreciation for all the subtle things that the therapist is watching for and correcting, before you develop bad patterns and “burn them into your hard drive”.

I think that the fact that I had learned an instrument was very helpful. If you play an instrument, while you may not know specifically what happens, you are familiar intuitively with how the learning process goes and what techniques work and how important practice is to master a scale, lick, or drum beat. Your brain learns through repetition. So I practice certain activities every day. I practice playing guitar, I do eye exercises to work on correcting my diplopia (double vision), I practice throwing and catching, putting pegs in a pegboard, wobbling a wobble stick like a Body-Blade (the fast twitch muscles on my left side don’t fire) and a whole lot more every day.

I can see my brains progress daily through examples of it’s improvements. I think that having the right “building blocks” or nutrition (vitamins, minerals, fatty acids etc.) for my brain to use to wire neurons was and is also key. You can’t build without materials. Thank you again for steering me in the right direction, Aunt Debbie!