Posts in Rahul Press
I have ALS. I wish a polygenic analysis had told me it was coming

If a fortune teller had “read” my future two years ago, I would have learned that I was at high risk of dying. Soon. A year ago I was diagnosed with the disease that killed baseball legend Lou Gehrig. It’s called amyotrophic lateral sclerosis, or ALS, and mine is moving swiftly. I’d have wanted to know what was headed my way so I could start preparing for it and make every hour count.

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‘I want out of this body’: I can’t move, talk or breathe on my own. But I’m still in there thinking, remembering my old life.

What is it like to be locked into your body, to be alive but not living? I’m dying — fast. My lungs are at 20 percent of vital capacity and it’s a matter of time before the nerves supplying my breathing muscles degenerate. I have a rapid form of ALS — amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

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I’m a scientist studying brain illnesses. Now I’m a lock-in, living with one of them: Lou Gehrig’s disease.

I cannot speak, walk or use my hands anymore. I am unable to move my limbs or vocalize a grunt. I communicate with my eyes, using my gaze on a specialized computer screen to write a letter at a time. I am unable to extend my neck or swallow. I drool incessantly, choking on my secretions several times a day. Deep breathing is a thing of the past. Even simple breathing is done with the help of a machine. I am a physician and a scientist and built a career studying brain diseases, and now I am living with one of the diseases that I study. I am just 40 with an amazing wife and two beautiful children.

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