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Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK.

A terminal diagnosis can really mess with your head. Honestly, it makes you want to run away to the moon. Many ALS patients want to fade away quietly. This was not for me.

The doctor who diagnosed me with ALS, or motor neuron disease, told me that it would kill me in two or three years.

I have been diagnosed with Amyotrophic Lateral Sclerosis (ALS). It's a terminal disease with an average lifespan of two to five years post-diagnosis, and scientists don't know what causes it. ALS prevents your brain from talking to your muscles. As a result, muscles die. As a result, every 90 minutes people die. I am a person.

After I came out of surgery - I was in the hospital for five weeks - I found that I gravitated toward very gentle sounds: chant music, solo bamboo flute sounds, a laid-back record of my own called 'Inside.' And the music became a very real part of my recovery process.

Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love - I think that's the meaning of this human experience.

I don't over-sing anymore, which I used to suffer from terribly because I couldn't hear myself.

To cure ALS medically is not economical. The realities are that it's difficult to find funding for research for a medical cure. I believe in developing technology as opposed to medical research. Technology can be economical.

I was ready to quit music. It felt to me like music equalled death.

My hearing after 50 years of playing music sometimes isn't too great.