If you were to look at Ryan, you’d initially think everything is just fine. Physically, he is the picture of health. Granted, his muscles don’t have the fine cuts in them that were present two years ago, but his mass is still present. He is a strong man, no matter his condition. He works extremely hard every day and it shows.
I suspect he is more physically active then most men his age. This keeps him lean and tone. He certainly leads a better lifestyle, absent the college food and parties. His challenge is he is not able to do resistance training (pump iron). The most I can do for him is to place him in various positions so his bones bear weight, hopefully improving density.
It’s one of the deepest frustrations for me to look at him and see a physically healthy young man, without the means to use this capacity. One way I describe Ryan’s condition to those new to his story is that all the hardware works, but the software is damaged. In Ryan’s case, sadly, it’s the operating system. It seems there is no warranty on damage caused by negligent abuse.
I’ve always felt that consistent Speech Therapy (which should really be called “Sensory Therapy”) in concert with physical therapy is key to any chance of recovery. My belief is these must be integrated. For example, Ryan certainly benefits from the feel of a baseball in his hand (very familiar to him) or the physical motion of bringing his throwing arm sweeping down (through the pitching motion). My point is, why not combine these (I do)? Why is there such a division of duties? Ryan has probably throw a baseball a million times in his life and this must be locked deep in his mind. It’s an activity done so often he didn’t even think about it. Anyhow, this is just one example that I wish I could impress on the therapeutic community.
I am giving this a lot of thought lately. To the point where I’d like to create a system of interactive “buttons” that could be used in the most basic of form (and expanded upon later). They already exist and I’m angry at myself for not doing this sooner. The buttons (about the size of a pancake) interface with a computer to give audio feedback that I can program.
Perhaps this is nothing more than two buttons, one for “yes” and one for “no”. I could mount these to each side of his wheelchair headrest and ask yes/no questions. Turning or leaning his head one direction or the other (if he is mentally able to understand) then allows the computer to answer for him.
Sue already thinks I’m a bit mad and this certainly won’t help disprove her belief. I’m not sure what makes her think this of me.
Anyhow, please excuse me while I put on my white lab coat, goggles, and rubber gloves and slip down to the dungeon.