Respiratory onset ALS is very rare. Most people with ALS have problems with arms and legs first, a smaller percentage have issues with speech and swallowing. Most with ALS will die with respiratory issues because breathing muscles stop working.
What happens when breathing muscles are affected first?
Historically, respiratory onset ALS resulted in rapid death. Thanks to technological advances in home ventilators many of us can live much longer; nearly to the same average as others with ALS.
The end result is the same. Death. Breathing muscles stop working.
One of my objectives with respiratory onset ALS is to work toward a soft landing. Interestingly, there are many similar definitions for soft landing.
- The landing of a space vehicle on a celestial body or on Earth in such a way as to prevent damage or destruction of the vehicle.
- A landing by a spacecraft on the moon or a planet at a sufficiently low velocity for the equipment or occupants to remain unharmed.
- A landing by a spacecraft on a planetary body that is performed slowly, without a jarring impact.
To me, the basic idea of soft landing is not to crash.
In other words, I would prefer to die peacefully and quietly; a landing without a crash. My exercise routine has helped to maintain strength and agility beyond expectations but the end is near. The ventilator has helped to maintain breathing beyond my body’s ability with ALS but the end is near.
It’s time to sleep. That’s my soft landing.