In July, Laurus Foundation continued to make progress on the initiatives we wrote about in last month’s Laurus Foundation Update. This month we thought we’d do something a little different. Six dynamic and inspiring people will be receiving an Independence One - the most advanced voice activated wireless Electronic Aid to Daily Living (EADL). Each unit allows the user complete control by voice, touchpad, and/or switch of all the peripheral equipment typically installed in a home, dorm room, hospital, rehab facility, or workplace. We’d like you to meet one very special person whom the foundation will be helping achieve an even greater level of independence.

Here is Mike’s story.

Mike Bougher Biography Highlights

Although at 44 years old, I am paralyzed from the neck down and unable to smile, breathe without a ventilator, or speak after being afflicted with ALS, please don’t feel sorry for me. I am happier, and more fulfilled than I have ever been.

I was raised on a small farm just North of Vacaville, California and was a professional magician and drummer before graduating high school. After completing high school, I began an electrical apprenticeship at Mare Island Naval Shipyard where I primarily performed troubleshooting and repair of various cranes and electric vehicles. I worked my way up to foreman before being laid-off in 1990 due to shipyard closure.

I then began work for an instrumen-tation and process controls (factory automation) company. When I was diagnosed with ALS in July 1998, I was an estimator/system designer/project manager. I normally had two to four projects, in various stages of completion, running simultaneously. It is now clear to me that this was too much responsibility for one person. My ALS progression slowed to about 15 percent of its former pace when I decided to quit in 2000.

My background in process controls and computer programming has allowed me to maintain and update a home automation/augmentative communica-tion system that, so far, has kept up with my growing needs. Below are a few milestones in the upgrades of my system:

1. Approx. June 1999 – Purchased and programmed . The muscles in my hands and fingers had become weak enough that I could no longer depress the buttons on a standard remote control. I purchased and programmed a Pronto universal remote. This device was useful because commands are input via a touch screen (less force required), and because it's capable of learning macros.
Approx. July 1999 – Modified standard mouse, adding external buttons. Because the muscles in my hands were weak, but I still had some strength in my arms, I could move the mouse around, but couldn't depress the buttons. I modified a standard mouse by wiring in a small plastic box that contained female 1/8 inch phono jacks. These jacks accepted standard switches, and in my case, I used Jelly Bean Switches mounted under the front edge of the desk. I moved the mouse around with my right hand while using the large muscles of my left arm to pull up on the buttons.
Approx. January 2002 – Added laptop, RedRat Ir blaster, and PowerHome home automation software. My hands had become too weak to operate the Pronto, so I needed another way to operate my entertainment center. I used my laptop with a Tracker 2000 head mouse and dwell software for the foundation of the system. Placing the reflective dot on the brim of a baseball cap amplifies the movement of your head. I then purchased, installed and programmed PowerHome home automation software. To produce the infrared signals required to operate the entertainment center I used a RedRat. This is a device that plugs into a USB port on your computer and produces infrared signals like a remote control. PowerHome is also capable of controlling X-10 devices and running macros, so I purchased various X-10 modules and used them to control fans, lights, etc.
Approx. January 2005 – Removed switches from desktop computer, used Tracker 2000 with “Cheek Switch” and dwell software. I could no longer move my arms enough to push the desktop mouse around or pull on the switches. I installed the Tracker 2000 and built a switch system I could operate by bulging my cheek "bullfrog style". I used an old telephone headset, and attached a light touch switch with paper medical tape (see photo). Because this provided only one switch input, I use MouseTool dwell software which I only turn on for left clicks.
Approx. November 2005 – Began using Dynavox DV4. Because I could no longer speak audibly due to a tracheotomy, I replaced the old laptop with a DynaVox DV4. This allowed me to communicate and also control the entertainment center. I used an Extreme Head Mouse with my "cheek switch" to interface..
Approx. July 2006 – Replaced DynaVox hardware with new laptop and DynaVox Series 4 software.
Disappointed with the slow performance of the DynaVox DV4, I purchased a new laptop and installed PowerHome for home automation, and DynaVox Series 4 software for communication. This solved the performance problem and also allowed me to load the Series 4 software on my desktop for word processing projects. Through continuous refinement to the Series 4 software, I'm building a program that is extremely efficient for typing things like emails or this document. Because the new laptop has a high resolution widescreen, and the Extreme Head Mouse has no acceleration features, I was having trouble moving across the laptop screen with one head movement. I changed to the Tracker One head mouse which has two acceleration settings, and my head movement problems were solved.

The expected life span of an ALS patient is 2 to 5 years from the date of diagnosis. This month marks my 10th year, and I am still going strong. I decided long ago that, although I have no control over the deterioration of my body, I can grow my mind and soul. I set out on a spiritual path that has led me to a place where I am happy and fulfilled.

It has become my primary focus in life to ease the suffering of other ALS patients through producing digital paintings that I sell for the benefit of the ALS Association, and through the knowledge I contribute to a couple on-line ALS forums. I feel good about helping with this project because it will help other paralyzed people who don't have the technical know-how, enjoy the independence that I have been able to maintain.

For more information about my history, my art, or my spiritual journey, go to quadbliss.com .