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My Eyes, Ears and Voice to the World

02/11/2009

K3SRO, Meeting the ALS Challenge

For the past 46 years, ham radio has been a very important and active part of my life. I was first licensed as a Novice at the age of 16 on March 29, 1962. I quickly upgraded to Technician class and then to General class within a year or two. Eventually in 1984, I received my Advanced and Extra class licenses in that same year.

What I enjoy most of all about our wonderful hobby is making new and exciting friends. Over the years I have spoken to many interesting people who share the same interest and activities. My favorite modes are CW and SSB. I enjoy chasing DX even if it is a country that I have worked many times. I have worked and confirmed approximately 300 mixed mode DXCC entities. I enjoy ragchewing and collecting QSL cards.

I have been a member of the Warminster Amateur Radio Club for 25 years through which I have been involved in public service events and communications.

Why Write This Article

Recently, my whole life was been turned upside down. I was diagnosed with Lou Gehrig's disease, ALS or amyotrophic lateral sclerosis, in August 2007. In 2004, I began to have intense lower back pain. After several visits to an orthopedic surgeon, the doctor sent me to a physical therapist and a pain specialist. My pain eventually went away, but that was not the end of my problems.

In 2005, I began to have numbness in a small area of my right knee as well as muscle cramps in the bottom of my right foot. One morning while getting dressed, my wife, Linda, noticed that the muscles in my right leg were atrophied. After many extensive tests, my neurosurgeon recommended a laminectomy, a form of spinal surgery. During the first 3 weeks of my recovery, I began to notice that my entire right shin was numb. Eventually, I developed a slight limp with my right leg. I returned to my neurosurgeon for more tests. He was extremely perplexed about my situation. I went to another neurosurgeon for a second opinion. Both neurosurgeons recommend that I see a neurologist. After many more MRIs, blood tests, EMGs (the electromyogram is a test that measures the response of a muscle to a stimuli), nerve conduction tests and CT myelograms (an X-ray type test used to study the spine), my neurologist concluded that I had ALS. I sought another opinion from a well-known ALS neurologist and researcher at Johns Hopkins University. He also agreed that I had ALS.

My physicians advised me to take the only FDA approved medication for ALS, Rilutek. I will be taking this medication twice a day and will need to see my neurologist every 6 months for the rest of my life.

I decided to write this article about my experience with this disease as a way of staying positive. I hope this article will inspire other people who have serious illnesses and handicaps.

What Is Lou Gehrig's Disease

In 1869 ALS was first identified in France by a doctor and pioneer of neurology, Jean-Martin Charcot. ALS was originally called Charcot's disease. In more recent years, the disease was named after the famous baseball player Lou Gehrig who died in 1941. He and Babe Ruth played for the Yankees. In 1938, Lou Gehrig's batting average fell below .300 for the first time since 1925. He lacked his usual strength and he began to stumble. His hitting was affected as well as his base running. In 1939 the Mayo Clinic diagnosed him with a rare form of degenerative disease, amyotrophic lateral sclerosis.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. In ALS, these cells die and nerve impulses no longer reach the muscles. Amyotrophic means no muscle nourishment, muscle wasting. Early symptoms include muscle weakness in the arms and legs, impaired speech, difficulty swallowing or breathing, muscle twitching (called facilitations), cramping and muscle atrophy, tripping and falling down. Uncontrolled laughing or crying can also occur. Symptoms vary with each patient as well as the progression of this illness. There is no cure and researchers do not know what causes this disease.

Sense of taste, smell, hearing, sight and touch are not affected. Each year in the USA 5600 people will be diagnosed with ALS, 15 new cases a day. There are 30,000 Americans who have this disease at any one time. ALS usually develops between the ages of 40 and 70 with the average onset at age 55. Unfortunately, teens and people in their 20s and 30s are sometimes affected. ALS is more common in men than women, but later in life, the numbers become more equal. Half the people live at least 3 or more years; 20 percent live 5 years or more and up to 10 percent will live more than 10 years. There are three forms of ALS, sporadic, familial and Guamanian (Guam and the Pacific Islands).

To learn more about this disease, please visit the ALS Association Web site.

Ham Radio My Way

At the present time, I have completely transformed my ham shack with solid state equipment. My station is completely computer controlled using Ham Radio Deluxe. Most of my equipment is made by ICOM. I use an IC-7800 HF+6 transceiver, IC-756PRO2 HF+6 transceiver and IC-820H VHF/UHF multimode transceiver; two Tokyo Hy-Power HL-1.5KFX amplifiers; a manual Palstar AT1KM and AT-AUTO antenna tuners.

I use the ICOM CI-V level converter to interface with my computer. By using a wireless keyboard and mouse, I am able to move both computer peripherals around on my ham desk without the clutter of cables getting in the way of my operating. My keyboard and mouse can be used in the future at my bedside when my ALS progresses.

My present antennas are a 4 element Mosley TA-53M for 20, 17, 15, 12 and 10 meters and a W9INN inverted V antenna for 80/75, 40 and 30 meters. My future antenna installation will include a 50 foot crank-up, tilt-over aluminum tower made by Aluma Tower Company. I recently purchased an M2 Antenna Systems 9 element, 2 meter Yagi and a Mosley 6 meter adapter kit for my TA-53M.

My ham shack is located on the fourth level of our house. I will be modifying our home for all of my future needs. We will have to build a first floor master bedroom and handicap bathroom. My ham shack will be moved to the first floor. There are many state, federal and private agency grants or loans as well as federal tax exemptions for individuals who need to modify their home.

Courage HANDI-HAM System

The Courage HANDI-HAM System helps people with physical disabilities and sensory impairment obtain their ham radio license. There are many services available to members. You can contact HANDI-HAM by phone toll free at 1-866-HANDIHAM or by mail at Courage HANDI-HAM System, 3915 Golden Valley Road, Minneapolis, Minnesota 55422.

More Future Plans

My wife, Linda, and I plan to travel more in the next few years. I want to visit many of my ham radio friends who live in Oregon, Arizona, Florida, Michigan, Ohio, Pennsylvania and several European Union countries. We have formed some very strong bonds and relationships over the years.

In 2001, we traveled to New Zealand and Australia. I met some of my ham friends while touring and was able to operate from Quartz Hill on the North Island of New Zealand briefly becoming ZL/K3SRO. Wow, what a thrill to be on the other side of a pileup. To learn more about my trip, please read my article, "Quartz Hill, A Chance of a Lifetime for Hams the World Over" on the ARRLWeb page.

At the present time, I am planning several ALS fundraising events and ALS walks in the Philadelphia area. If you would like to sponsor my walks, please contact me.

On June 29, 2008, with the help of our local Porsche club, Riesentoter and Millennium Aviation, we held an autocross ALS fundraiser at the Reading Regional Airport. We raised over $4000 for the Greater Philadelphia Chapter of the ALS Association. The money will be used for patient care and for ALS research. One of my biggest dreams is to have a live music concert that would raise funds for local patient care and for ALS research. If anyone has connections with the music industry, recording studios or a famous entertainer, please contact me.

Technological Advances to Aid the Handicapped

During the past several years, advances in the electronics industry and electronics research have really skyrocketed. Today we have computers and devices that speak for us and to us. There is extensive research and development with speech to text (STT) and text to speech (TTS) programs and software. There are computers that you can control with your eyes called Eyegaze. This system was designed by LC Technologies, Inc located in McLean, Virginia. It can detect eye movements within 0.25 inch. The Eyegaze system is both an eye operated computer for control and communication and a device for monitoring and recording eye motion and related eye data. It is a hands-off, unobtrusive remote human-computer interface that can be used to track the user's gazepoint or allow an operator to interact with their environment using only their eyes.

A company called Cepstral, located in Pittsburgh, Pennsylvania, has developed TTS programs that have applications for industry, the medical field, toys and games, weather announcements, navigation, mobile devices, assistive power of speech, reading and learning. Cepstral has offered to develop a custom speech program in my own voice. I will record my voice into one of their program files using a USB microphone made by Blue Microphones. This microphone is called the Snowball and installation requires no driver software download. It has applications with Mac OS X and with Windows XP. On the rear of the microphone, there is a three position switch. The first position uses a cardioid pattern, the second position uses a cardioid pattern with a -10 dB pad and the third position activates the omnidirectional pattern. This microphone is great for ham radio, podcasting, recording vocals or musical instruments.

The Centre for Speech Technology Research at the University of Edinburgh has developed the Festival Speech Synthesis System. Festival offers the general framework for building speech synthesis systems as well as various modules. The program offers full text to speech through a number of application program interfaces. Festival is multilingual but it is more advanced in the English format.

Thank You

I would like to take this opportunity to thank Aluma Tower Company in Vero Beach, Florida, Ronald Diniz, General Manager, for his very generous donation. These donations will make the use of my T-50H aluminum tower much easier for me and my family to operate as my ALS progresses.

I would also like to thank the following people: Patrick Dexter, Cepstral Director of Business Development, for his assistance with the development of my own voice program as well as the use of their Snowball USB microphone; Simon King, the Centre for Speech Technology Research at the University of Edinburgh, for his assistance with their Festival Speech Synthesis System; the Riesentoter Chapter of the Porsche Club of America and Millennium Aviation who helped to make my first ALS fundraiser a success; my dear friends Arthur and Barbara Pomerantz who are assisting me with various fundraising efforts here in Philadelphia and in St Thomas, Virgin Islands and Sherri Brower, W4STB, for her fine editing skills.

Dedication

I want to dedicate this article to Professor Randy Pausch who died from pancreatic cancer. He taught at Carnegie Mellon University. His last lecture was an inspiration to me.

All photos courtesy Robert N. Wilderman, K3SRO.

Robert N. Wilderman, K3SRO, can be contacted at 19 Glen Rd, Lansdale, PA 19446-1405, dlrwild1@comcast.net

Robert N. Wilderman, K3SRO



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