I think we will find a cure only when the world clearly understands what ALS does and how to help. This real life example may help you understand ALS.
For those reading at home, experiment in real time. Grab some dental floss and an old sleeping bag. Unroll the sleeping bag and get all the way in. Head first. Now try to floss your teeth, struggling to move in that restricted space. Did you feel a sense of panic, or frustration, like the more effort you gave the harder things got? Were you short of breath? These are all very real phenomena for ALS patients. Let me know your emotions going through the experience on Twitter. The first 25 people that email video of the trial will get a t-shirt/wristband package.
So, how does a person react when he or she learns there are two to five years left with which to live?
Denial. Frustration. Anger. Despair. But at some point, I understood that acceptance of this diagnosis was not admitting defeat. That was critical for me personally. I think our lives are enriched when our own death is a conscious thought. I am not saying we should obsess over this, but it can be useful, because it makes you focus on the things and people you truly love. After that realization, I started to dig in, to look forward to what might be in my future.
Because ALS research is underfunded and under-resourced, patients end up fading away quietly. I did not want to fade away quietly.
He goes on to chronicle how his foundation plans to raise money for an ALS cure. Give it a read.
I want more like this!
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