Testing the Future

Chapter 12

Testing the Future

 

I was sitting in my backyard reading a text book to boost my knowledge of geology, a very fascinating subject if you ask me. At that time reading was a ridiculously complicated task. Because of my oscillopsia and associated nystagmus (bouncy, blurry vision and inability to focus) my eyes couldn’t track from one line to another. To read I had to sit perfectly still, a task in and of its self. If I didn’t, words appeared to be jumping off the page. I wanted nothing more than to calm this down so I came up with an idea – I devised a very simple makeshift ruler. Using a piece of 8 ½ by 11 paper that I folded in half I covered up what I hadn’t read where just above the top of the paper was one line in full view and full reading access! I still had to sit quietly, but at least I could read. Everything below the top was covered and invisible until I slid the paper down to read the next line. I found this a genius idea and it worked like a charm; the jumping took a hike. A bonus was by focusing only on the line above the top of the paper, what I‘d already read was removed from my attention which made the line of importance stand out. I think I should patent this idea because it really works.

Back to my backyard, reading with my cool new ruler, my telephone rang. I answered it and for the first time ever I heard the voice of Dr. Paul Bach-y-Rita. He was soft spoken yet powerfully bursting with excitement, great optimism, and promise of a new technology he and his team developed at the University of Wisconsin-Madison. He said the technology could help me get my balance back. This was in 2001, the year I was introduced to an innovative device called the TDU. It was then I stepped into the future as Subject Zero.
When Paul’s optimistic, excited, and promising call came in, I was experiencing a similar mind-set of my own. Working with a local Division of Vocational Rehabilitation, I went back to school with a goal of earning a degree in counseling. I wanted to work with others who had transitioned into disability to help them adjust and overcome, like I was really there myself… I thought I had enough experience with disability I could test out of classes required. Turned out I needed to start at a much lower level studying things I had long ago forgotten. Great, back to the basics like geology, english, and math, that meant fractions, I hate fractions.

 
College was much different from when I graduated high school 1976. Heck, I learned how to type on a manual typewriter and there were no such thing as a computer! However, I jumped into classes head first and began studying at MATC, a technical college located in Madison. It was at MATC where I met Beth Bremer and Todd Jones, both blessed with amazing energy of encouragement and guidance. I owe them a lot for helping me pick classes, set up accommodations, and getting me through some difficult adjustments. Thank you my friends.

 
I put the text book down and listened to Paul explain the concepts of the TDU. Paul shared details of how the device produced stimulations on the tongue which facilitated an individual without balance to regain exactly that, balance. I have to admit I was very skeptical as I listened to Paul explain everything, after all, who ever heard about, as Paul described it, “sensory substitution” or “brain plasticity”? I countered Paul’s explanations with questions and disbelief to make sense of what he was explaining. That was when Paul invited me to join his TDU research as a test subject. Absorbing our conversation I pondered his invitation. I came to the conclusion – what the heck, why not try it. What did I have to lose, balance? I lost that a long time ago. If it worked I’d be ecstatic, if it didn’t, I’d remain the same old, same old me. I left no room for hope either; that disappeared long ago too. So, with that what the heck attitude, I agreed to let the tests begin.

 
Going to school at MATC it put me in close proximity to Paul’s lab on the UW campus. I was practiced in driving to MATC, but the drive to the campus was a bit more challenging, well a lot more. There were students walking or running, crossing streets against the red hand, and zipping all about on buses or scooters. There was indeed a whole lot more traffic and much more movement than I was practiced in or use to. I was intrigued and curious about my conversation with Paul so I knew I had to take the chance and face the dilemma of driving to the UW campus to test the device… I had been practicing driving for about two years, mostly short distances and then expanding to MATC. Although difficult, and admittedly concerned, I decided I could take on the wheel and road to try out the device. Back then I kept to wide open country roads driving like Grandpa on a Sunday afternoon road trip. When I reached the end of the quiet back roads, I bucked up for the rest of the trip using highways. That was the only way… I stayed in the right lane just like Grandpa. I did turn off my blinker…

 
Prior to meeting Paul, he put me in touch with Mitch Tyler, one of his research team members. Mitch called me and was so excited that I had agreed to test the device he sounded like he was going to burst through the phone. Mitch gave me detailed information on where to park and where he would meet me, a stone’s throw between a parking ramp and the entrance to the UW Medical Science Center where the research was taking place.
I gave myself a great deal of extra time for my arrival, just in case I ran into problems, and in hopes that I wouldn’t run into anything. I made it to the lab, a milestone for sure!
I was early so I sat in my car for 20 minutes or so before getting out to make my way to the area Mitch said to meet. It was a beautiful day with the sun warmly touching my face which eased how apprehensive I felt. When the door opened there was Mitch with a wide smile overflowing with great excitement. Never before had I met someone so lit up with passion for the work they were doing, described as groundbreaking and would change the world. He was convinced. His amazing attitude, which I continue to admire today, helped ease my apprehension towards whatever it was I was about to experience.

 
To get to the lab Mitch guided me with cane in hand and a wobbling mess, through endless corridors and hallways, to elevators, through doors, and twists and turns. I thought to myself just how the heck I was ever going find my way out of there? With that said, one of the things I learned to help find my way around was to set various points of reference such as colors and shapes in my memory to help me figure out where I had come from, kind of like dropping bread crumbs. On this trek I used an old couch from at least the 70’s covered in a loud flowered pattern, an emergency eye wash area, colors of posters on walls and doors, a giant freezer – of which I didn’t want to know was in it. After all I was in a Medical Science building… Of course at the end of the tests Mitch guided me back to the parking ramp, where I set my points of reference only in reverse.

 
In the lab was Paul, who looked to be a cross between Einstein and Groucho Marx, but in his own handsome way. I listened again to his wonderfully kind and mild mannered voice and witnessed a humble demeanor of greatness. I felt an instant bond with him. Then I met Yuri Danilov, a giant of a man who at first scared the crap out of me. He is really tall and towers over my 5’ 7” frame, and revealed a very serious demeanor. As it would turn out the ideas Yuri and I cultivated led us to becoming cohorts, fellow researchers and theorists, just as I did with Mitch and Paul. Kurt Kazmarek was there, an engineer in the development of the TDU and a total genius. If I missed anyone or confused my recall of who was there, my apology, after all at the time of this writing, this experience happened over 13 years ago.

 
After introductions, Mitch guided me to a seat where in front of me were a computer monitor displaying a maze, a joystick, and a strange looking metal box with a computer like ribbon attached. I wondered, was I to play video games? If so, I had to admit to the team that whatever they had planned, I was completely joystick challenged. Seriously, even with a son who could use one with his hands tied behind his back, I had no idea how to make things do what joysticks make them do. So by admitting my joystick downfall, I was given lessons on how to make one my friend, a very perplexing friend.

 
After several lessons on how to use a joystick, I was asked to navigate the maze displayed on the monitor with a flashing guide pointing the way to escape the madness. It was quite a task since my vision made following the flashing guide quite a challenge. That along with my newly acquired yet shaky joystick skills along with a lot of help from Mitch, I was taught how to use the joystick to correspond with the flashing guide. I worked on using it to make my way through turns going right, then left, then forward and back to more turns left and right. After several attempts I finally got it and made it to the end of the maze. Whew… After this joyful experience I was asked to navigate the maze without any help. This was a cross between nervous fun and frustration, but by golly and with lots of laughter, I did it!

 
With the joystick and maze navigation accomplished, Mitch then introduced the TDU; I’ll try to describe it. There was a computer like ribbon, about the width of a quarter where at the end of the ribbon were golden dots. The other end of the ribbon was attached to the metal box. On the top of the metal box contraption was a pad of numbers that looked like they came from an old time telephone. It had a couple of knobs on the side. I was asked to place the end of the ribbon with the golden dots on my tongue. That was just weird but I went with it. It was explained what the knobs on the metal box were about; to control a sensation I would feel on my tongue. Now, that was very weird.

 
A peek of one of the original TDU’s
First TDU
Image from Google Images located March 2014

 
The next step was a little practice, some very strange practice. I learned the purpose of the knobs and their connection to the golden dots and how the TDU was connected to the golden dots. With the golden dots on my tongue I was asked to turn the knobs to a place where I felt a sensation on my tongue, which later I came to describe as feeling like champagne bubbles. As instructed, I turned the knobs, the golden dots came to life and I dialed in a comfortable “buzz” on my tongue. I was completely flabbergasted by what I was experiencing. Then, being dialed in, I was I asked to navigate a completely different maze from my earlier practice, using the sensations I felt on my tongue. Okay then… The sensations move solidly in different patterns: middle to left to turn left, middle to right to turn right, middle to tip to go forward. I was asked to put together my movement of the joystick with the sensations on my tongue as I just described. Using this method I was asked to once again navigate my way through the maze. So with champagne bubbles on my tongue and joystick in hand, I set off on my first TDU experience using sensations on my tongue to make it from point A to point B. Crazy but true, and, I did it.

 
Next, additional sensations on my tongue were introduced, a pulsing from the middle of my tongue to the tip indicating steps going down and a pulsing from middle to back indicating steps going up. A lot to remember but okay then, let’s give it a try with a new maze that had steps in it. More tries but I did it.

 
Now came the really startling ask, to complete a trek through the maze using the sensations felt on my tongue but this time blindfolded. I looked at the team, they had to be kidding. Really, blindfolded? Using only the sensations on my tongue? I was convinced I would never accomplish this but seeing as I had come this far, I figured I may as well try it. Again a completely different maze was introduced to eliminate any memory I may have acquired from using the prior mazes. With blindfold on, not a peek to be had, and the TDU sensations on my tongue, joystick in hand, I slowly, with a few do over’s, paid close attention as I interpreted the sensations on my tongue to my movement of the joystick to reach the end of the maze. Unbelievably – I did it.

 
My first TDU experiment ended. The next step started an astonishing progression of results that I never in a million years ever thought would happen to me.

 

For more information on the birth of the TDU for balance, here’s an article about the work of Paul and his team from an issue of “On Wisconsin”, a UW Madison’s Alumni publication. http://www.uwalumni.com/home/onwisconsin/archives/spring2007/balancingact.aspx

This entry was posted in Aminoglycosides, Biomedical Research, Clinical Research, Disability, Gentamicin, Inspiration, Institutional Review Board, Lessons, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Physical Therapy, Rehabilitation, Research, Self Help, Sensory Substitution, Subject Zero, Tongue Display Unit, Transition, trauma, Vestibular System, Vocational Rehabilitation and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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