Humans can be afflicted with many diseases during a lifetime. From the common cold or flu to debilitating neuromuscular diseases to a variety of cancers. Sometimes it is wonderful that many of us can live a healthy life.
I have a rare version of ALS. Amyotrophic lateral sclerosis. What is it?
ALS… is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
As with many such neurological diseases, ALS has a few varieties, so not all who are afflicted will suffer the same way. But all will have the same outcome.
ALS often begins with muscle twitching and weakness in a limb, or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for this fatal disease.
My journey with ALS is about to come to the end. Breathing and movement have become excruciatingly difficult in recent weeks.
I wanted to document some of the symptoms; both typical and atypical.
Mayo Clinic again:
Signs and symptoms of ALS vary greatly from person to person, depending on which neurons are affected.
The list of symptoms is long but do not always appear in the same order.
- Difficulty walking or doing normal daily activities
- Tripping and falling
- Weakness in your leg, feet or ankles
- Hand weakness or clumsiness
- Slurred speech or trouble swallowing
- Muscle cramps and twitching in your arms, shoulders and tongue
- Inappropriate crying, laughing or yawning
- Cognitive and behavioral changes
I have most of those, but as noted, ALS will “vary greatly from person to person.” For example, weakness is everywhere, but mostly in a reverse order. Breathing was affected first and remains the worst symptom. I will die of respiratory distress soon but limbs remain in good shape and I can speak and swallow almost normally.
ALS often starts in the hands, feet or limbs, and then spreads to other parts of your body. As the disease advances and nerve cells are destroyed, your muscles get weaker. This eventually affects chewing, swallowing, speaking and breathing.
There’s generally no pain in the early stages of ALS, and pain is uncommon in the later stages. ALS doesn’t usually affect your bladder control or your senses.
What causes ALS?
ALS affects the nerve cells that control voluntary muscle movements such as walking and talking (motor neurons). ALS causes the motor neurons to gradually deteriorate, and then die. Motor neurons extend from the brain to the spinal cord to muscles throughout the body. When motor neurons are damaged, they stop sending messages to the muscles, so the muscles can’t function.
Average life expectancy with ALS is from three to five years. Those with respiratory onset live an average of 36 months. I’m at about 42 months now and the end is near.