Joyce Williams died yesterday (19 July) afternoon. Her name, and the person that she was will be unfamiliar to all but a few who read this piece. Joyce was the mother of Leigh, our daughter-in-law. Her cause of death was Amyotrophic lateral sclerosis (ALS). The illness, which effects the nerve cells of the brain and spinal cord, is more commonly known as Lou Gehrig’s disease.
Medicine is like playing 301 dart games in an English pub. You begin the game at 301, for example, with the goal of reaching zero. Sometimes you hit your mark. There are other throws when you hit the wall. And on an occasional throw you hit the fellow enjoying a pint.
Hitting the mark is the objective of medical treatment. Hitting zero, eradicating an illness is the goal of medical research. Hitting either the wall or the person having a pint happens too often in treatment and research.
Joyce was misdiagnosed until a few days before her death. This often occurs in medicine. A disease is either masked, quietly working through the body, or mimics other illnesses resulting in misdiagnosis.
These are some of the symptoms of ALS:
Trouble walking or doing usual daily activities. Tripping and falling. Weakness in the legs, feet or ankles. Hand weakness or clumsiness. Slurred speech or trouble swallowing. Weakness associated with muscle cramps and twitching in the arms, shoulders and tongue. The disease weakens the muscles used to move, swallow, and breathe.
Cognitive and behavioral changes may occur, and have been found in some patients with ALS.
Doctors tend to approach patients with a one shoe fits all mentality. Carefully read the ALS symptoms over again. These can apply to a number of diseases. At one point, my symptoms led to a diagnosis of ALS. This was changed to Multiple sclerosis, a disease that breaks down the protective covering of nerves. Numbness, weakness, trouble walking, vision changes and other symptoms are associated with the disease. After a period of time, the diagnosis was changed to Parkinson’s Disease. The symptoms for Parkinson’s include tremors, typically beginning in the hands and fingers, slowed movement, which make performing simple tasks difficult, rigid muscles, poor posture, loss of automatic movements, such as blinking and smiling, speech patterns and handwriting changes.
All of the examinations and tests, the changing diagnoses, eventually led the doctors to throw their arms up in the air. “We don’t know what the underlying cause is in your case,” one of the doctor’s confided. “We would know what to do if you came in here with a broken arm. The problem is when a patient comes in with symptoms we haven’t previously seen, or are unable to match to what we know, then we have no idea how to respond.”
Joyce lived unknowingly with ALS for three years. The darts were thrown. The average life expectancy for ALS is two to five years. Joyce unknowingly lived with it for three. The disease was aggressive during her last weeks.
Military service has been linked to both ALS and Parkinson’s Disease due to environmental and chemical exposure. An example of this is Agent Orange or other herbicides used during the Vietnam War, according to the U.S. Department of Veterans Affairs. There are environmental toxins that civilians are exposed to both in the home and workplace, such as lead, that may be connected with ALS. Medical studies are inconclusive in establishing a consistent link to any specific agent or chemical associated to ALS. There are also genetic factors that must be taken into account.
Medical research into ALS, Parkinson’s and MS, as well as other diseases requires investment in education and research. But it also requires a willingness for doctors to listen to their patients, to hear what the patient is saying. We do not enter a doctor’s office with medical knowledge or the vocabulary to discuss or often to even understand what is being said to us. We do understand the manifestation of symptoms, but not how to interpret those symptoms. Even a broken arm can have an underlying cause and long-term implications. The reality is that medicine doesn’t have all the answers. Science has its limitations. This is difficult for patients to accept. Medical science offers questions and we must have the curiosity to seek answers. What medical research and patient treatment does not require is the sowing of distrust and misinformation and a “war on science.”
Most of you will be unacquainted with Joyce Williams. She was more than a name and a statistic. She was a mother, a mother-in-law, a grandmother. Her death is a sharp pain, an absence of life that carves into the heart and mind of her family, and those who knew her grieve her absence. Her legacy for her family is one of love given and received.
Approximately 30,000 (8% of the population) suffer from ALS.
Please consider making a donation to either Target ALS or the ALS Association.
ALS Association: https://www.als.org/
Target ALS Home page link:
Photograph: Beauty’s Moment © 2025 Charles van Heck
Charles van Heck's Woodhull Journal 
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