We hear all about the celebrities supporting amyotrophic lateral sclerosis (ALS) research, and the disease Foundations that distribute the money raised. But there are many unsung heroes, people who spent their lives against unbelievable odds to better the lives of other ALS sufferers.
Donald M. Byrne is one of them.
Part 1. Don was diagnosed with ALS in October 1962. At the time, he had a wife and five little boys to support, and they gradually pitched in and helped him run his construction business, his cattle feed lot, his meat processing plant, and his apartment house business. It wasn't long before the disease of ALS forced him into a wheelchair.
As many readers know, ALS is a disease that causes paralysis of the muscles, both interior muscles and exterior muscles of the body. At the time, doctors could only diagnose ALS by the paralysis symptoms. 50% of the victims lost their life within two years, and 90% were gone by five years. The average being three years. Don lived twenty-nine years with the disease, refusing to give up. Like so many other diseases, ALS was considered a "mystery" disease. Doctors would shrug their shoulders, and patients lost hope. The prospect of financial ruin with no chance of recovery caused patients to pray for a quick end.
Don was a little different. Don was used to being self-reliant. He was an entrepreneur and an inventor, so it meant little to him that other people turned to apathy. Just the same, he was running out of time as his body continued the slow process of shutting down. When he had to go on a tracheal tube and a ventilator, this took away his ability to talk audibly. He soon had no use of his arms or legs, and he had to invent a new way of communicating. With the assistance of family members, he formulated a vocabulary utilizing the slightest movements of his facial muscles and movements of his eyes.
An on-looker would think nothing was happening at all - the movements were so slight. But in this way he could spell words and even do a bit of short hand. Having witnessed this many times over the course of about two years, I still find it amazing the he could convey letters of the alphabet with just the movement of his eyes. At some point in his life, his sister learned this new form of sign language, and for the last years of his life, when she was the only one left to help him, they communicated in this way. Don could hear just fine, so I could talk to him in a normal cadence, and then I would wait for her to translate his reply. They knew each other so well that often she knew his answer with just the flicker of one eye lid.
Part 2. When Don was first diagnosed with ALS at the University of Washington Medical School, his family doctor had a theory that it was caused by a virus. Dr. LaRele Stephens, MD knew of a pharmaceutical that was being taken off the market. The name of that drug may be lost in the fog of history, but it helped Don... enough to stabilize his decline and let him continue his research. Don credited his survival to Dr. Stephens and never forgot him. But Don's journey had just begun, and those who complain of obstacles in life may want to ponder Don's story. Don, most of all, was driven by the five little boys he had brought into this world and the desire to raise them.
With books propped up in front of him and someone to turn the pages, long before ebooks or text-to-speech software, Don began his study of Neurology, Immunology, and the general Biochemistry of the body and how any of it linked to Neuro-muscular disease and ALS in particular.
ALS is also known as Motor-Neuron Disease. Whatever the cause(s) of the disease, the motor neurons are eroded until they are unable to carry a signal. Without motor neurons, muscles have nothing to tell them what to do, so they sit. As they sit, the body begins a slow process of cannibalizing itself to stay alive. This part is not unique to ALS patients, and anyone with a chronic disabling injury or disease will find themselves withering away unless special dietary adjustments and movement therapies are begun. Back in the early 1980's I remember a lecture given by a biochemistry professor who was studying the profound loss of muscle mass of hospitalized patients. The most telling feature was the fact that the body was tearing down muscle for glutamine. Glutamine was like a golden key of life, and the body would sacrifice anything to get more of it.
To be continued.