Without giving it much thought, most of us learn more than we admit from our parents and grandparents. My parents taught me to own up to my own mistakes. My grandmother taught me that reality usually lies between two ends of an extreme scale.
What’s the worst that could happen? What’s the best that could happen? Often, what will happen falls somewhere in between.
ALS has a long list of debilitating symptoms that have mostly the same ending.
In between the first symptom and death there are more symptoms, many doctors and tests, a diagnosis or two or three, worsening symptoms. Those symptoms do not appear exactly the same way or in the same degree for every patient but they end the same way.
My initial symptoms were a mild fatigue brought about by labored breathing. That was two years ago. Today, breathing difficulties are the most predominant symptom and I use a ventilator to sleep at night and a ventilator much of the day.
Certain muscles continue to show strength and coordination. My feet and legs and balance are good. Yet, my back muscles are so weak I cannot stand up. My arms and hands have lost some strength and coordination but I can type (my pinky finger will not stop hitting the Return key). Yet, my diaphragm and accessory breathing muscles are so weak I cannot breathe long without mechanical ventilation.
Swallowing? Not much of a problem to date. Coughing? A dying cat attempting to cough up a giant hairball sounds healthier than my cough. Without diaphragmatic strength, coughing is a major difficulty.
My symptoms fall within the two ends of the scale.
What about speech? Many ALS patients also lose speech. I’ve lost speech volume. What I say comes out more of a whisper. My wife’s hearing has worsened in recent years so she cannot hear what I say.
We are a happy couple.