There was a time in my life when I paid attention to the latest and greatest movies. These days, not so much. The Hunger Games is a very popular movie that I have not seen and I am not likely to see.
Each year two young representatives from each district are selected by lottery to participate in The Hunger Games. Part entertainment, part brutal retribution for a past rebellion, the televised games are broadcast throughout Panem. The 24 participants are forced to eliminate their competitors while the citizens of Panem are required to watch.
I have my own hunger to deal with these days. My hunger for air.
Most people with ALS have a similar problem that occurs in the latter stages of the disease’s progression. ALS affects muscle control throughout the body but the one that causes the most difficulty is respiratory distress.
Although clinical presentations can vary, there is no cure for ALS, and the disease is universally terminal, with most patients dying of respiratory complications.
Everyone experiences some degree of respiratory complication in life; from colds to flu to diseases that inhibit breathing and may even lead to death.
The body needs air to survive. What happens when ALS affects breathing muscles? ALSA:
- Air “hunger” (gasping, labored breathing) with and without activity
- Frequent yawning or sighing during the day
- Waking in the morning with a headache or fuzzy headed feeling (morning confusion)
- Awakening frequently during the night (insomnia)
- Difficulty lying flat
When my ventilator mask is off I gasp for air. It’s an air hunger. Breathing is very labored and accompanied by frequent gasping to get enough air to satisfy a single breath.
Fatigue? Got that in enormous quantities.
Frequent yawning and sighing? I can yawn with my ventilator mask on. Headaches? Yes. Difficulty lying flat? How about nearly impossible?
Insomnia? Nope. The ventilator works in such a way as to provide just the right amount of air to help with sleep. Good sleep. Deep sleep.
Unfortunately, my version of ALS started with respiratory problems and thanks to the ventilator extending life by many months, more traditional ALS symptoms have appeared in recent months– weakness in hands and arms are most notable but weak diaphragm also means reduced speech volume.
The worst symptom is the inability to breathe without using the ventilator. The hunger for air is immediate when the mask is removed and, in recent months, has increased in intensity to the point where chest muscles cramp and become painful within minutes.
This is an ongoing game of air hunger that will not have a good ending.