The moments of innocent misunderstanding triggered by others who are less aware of the complex nature that my situation entails can often provide the best comic relief for a reality that is not always pretty.
Of all the muscles in the body, the breathing muscles are the only ones (other than the heart) that are absolutely necessary for survival. Neuromuscular diseases such as muscular dystrophy, ALS, spinal cord injury, and many others affect the respiratory system. In fact, one of the most common reasons for illness and hospitalization for people with neuromuscular disease is pneumonia and breathing problems.
It is important to thoroughly assess the patient’s home environment before accepting a patient for home mechanical ventilation. The home environment should be free from fire, health, or safety hazards, including unsanitary conditions.