Howard Rehs
My journey with ALS
Welcome to my Blog about my journey with ALS. Remember, life is short, so play hard!
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March 2025 – 2nd Week
I first went to a pulmonologist at NYU (recommended by Dr. Andrews). They initially had me do several breathing tests … seems I am still ok. Checked my weight … still ok. Then we met with Dr. Choi … another really nice person. He went through many things with us and is getting me a Read.
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Early Medication Routine
For the first two weeks, I continued with my medications, which makes for quite the early morning routine: By 6 AM: Take Radicava. Then I decided to start working out: About 25 minutes every morning. Elliptical, weights, sit ups … trying to keep my muscles strong since I was beginning to see some weakness in Read.
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March 2025 – 1st Week
On Sunday morning (March 2), I started taking a new medication called Radicava. It’s a once-daily drug that must be taken at least eight hours after a major meal – ideally first thing in the morning – followed by an hour of fasting. The cycle is you take it for 2 weeks, then you are Read.
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The Beginnings
We never truly know what each new day will bring, and for me, one day in October marked the beginning of an unexpected journey. I woke up about 3 weeks after having the COVID and Flu vaccines with a sensation as if someone had struck a match in my throat. There was an intense burning Read.
My Journey 