The Work Begins and Subject Zero is Born

After that first a-maze-ment and monumental day in that tiny lab, I went home and resumed my studies at Madison Area Technical School, now Madison College.  Amid my school work, my tests, classes and exhaustion, I couldn’t stop wondering how the TDU made it so I could “see” to navigate those mazes.  I theorized, I spiritualized, I wondered what would come next.  I had this feeling that I was on the very edge of stepping off into something and somewhere no one has been before.  How very true this turned out to be.

It was months before the actual balance research began so I had time to consider whether or not to go through with it.  I had my moments of doubt, but having had that initial opportunity to learn how the TDU worked and form an acquaintance with it, I couldn’t remove that glimpse of potential it might have for some type of recovery for me.  So, I just went for it, why not, it wasn’t as if there was anything at stake I hadn’t lost all ready!

The lapse in time from my initial acquaintance with the TDU and starting my involvement with the research was due to Paul, Mitch and Yuri developing carefully structured clinical trials that were stringently reviewed, approved, and then monitored by the University of Wisconsin-Madison’s Institutional Review Board or IRB.  It’s important to know that every clinical trial in the United States must be approved and monitored by an Institutional Review Board.  An IRB is an independent committee of physicians, statisticians, community advocates and others whose objective is to ensure that a clinical trial is ethical and the rights of study participants are protected.

An IRB reviews a proposed clinical trial protocol to be certain that the risks involved with individuals participating in a trial are significantly outweighed by the potential benefits.  Federal law also stipulates that all institutions that conduct or support biomedical research involving people as test subjects, must have an IRB that approves and periodically reviews the research projects.  All these regulations and policies sum up to protect subjects in clinical research to ensure that their safety is given the highest priority.  So, learning this definitely calmed any nerves I had about the trials, my safety came first and Paul, Mitch and Yuri took great care to do just that.

The day came when the clinical trials could begin.  I was still very much challenged by my condition and struggled daily trying my best to do the best I could with what I had.   With my cane at my side, feet wide apart, a staggered, stooped over walk, and blurry and bouncy gaze to the floor, I arrived for my first day of research.  In a small room just off the area of that tiny lab we started in, was “area TDU”.  First thing I noticed was the equipment had changed.  Instead of a joystick and a blindfold I was fitted with a green construction helmet that had been modified by carving out holes to reduce its overall weight.

 NYTimes Image

This is the actual helmet and me wearing it.  Photo is from the NY Times.

Inside and at the top of this helmet was attached a small computer board from which wires were attached and connected to a modified version of the TDU.  The computer monitor remained the same.  All of these new parts were wired together – the green helmet, TDU, the monitor, a keyboard, and a desktop computer.

The lab was set up and we were ready for the first trial.  Paul, Mitch and Yuri began testing the TDU on me with a center of attention on hopefully seeing a positive effect on my balance.

The trials were conducted with me sitting on the edge of a chair with my feet together, knees touching, arms crossed and my hands holding my elbows.  This left me in quite an unstable position because without leaning against the back of the chair or having another way to “hold on” I didn’t have a place of spatial reference other than through my butt and feet.  To make it even more challenging I was asked to close my eyes which instantly caused my upper body to begin to wobble and bobble uncontrollably.

In this position I was instructed to place the TDU in my mouth.  I adjusted the sensation to my comfort level and the first series of historic trials began.  These trials were centered around intervals of 100, 200 and 300 seconds, eyes open and eyes closed, with and without the TDU in my mouth.  It was exhausting to go through but it was also incredibly engaging and exciting.

After doing this over and over and over again, came a great discovery; during those short seconds when the TDU was in my mouth, with its sensations on my tongue, my body and my mind became still and… quiet.  Without the TDU in my mouth and/or the disappearance of the sensation, I was unable to control my body and the wobble, bobble movements, and noise, took over again.  This device did indeed make a difference!

Then another great discovery;  after several series of trials using the TDU and the sensations on my tongue, with my eyes closed, and experiencing the stillness, I was asked to remain sitting in my position with my eyes closed after the TDU was taken out of my mouth.  What was revealed was our groundbreaking discovery… a residual effect remained after the TDU and its sensations were taken out of my mouth!  For a short time I was able to remain still and stable!!!

Then we discovered that the longer the TDU was in my mouth, the longer the residual would last!  We were on to something medically foundational and amazing!  But for me, the amazement was that the more I was exposed to the TDU the more I began reconnecting to Cheryl again… to my environment, to my very self.  Very slowly, ever so gently, I was beginning to visualize a journey where a much stronger and awakened Cheryl was waiting.  I am Subject Zero, and I had come alive.

This entry was posted in Biomedical Research, Clinical Research, Disability, Disability Noise, Gentamicin, Inspiration, Institutional Review Board, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System and tagged , , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s