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  • Writer's pictureRuss Newton

2022! Never thought I would see it.


When I was diagnosed on 11/01/19 I was given 22 months to live. I was diagnosed with Bulbar On set ALS, the most deadly form of it. It starts in your speech and quickly moves to lungs and once lungs are gone, so are you. The one caveat I must tell you about is I was diagnosed in six months. That happen because my employer, Hearst, paid for me to fly to New York and see a specialist at Columbia Medical Center. I had been diagnosed with Myasthenia Gravis in San Francisco and they quickly ruled that out at Columbia. I think they knew I had ALS but they sent me out for an MRI and then referred me to University of San Francisco Health services. They saw me on 11/01/19 and diagnosed me the same day. Anyways, it was six months from the first symptom on May 4th, 2019 to 11/01/19. So the typical diagnoses can take a year or longer. So maybe my 22 months really started 6 months early so that would put me at May 1, 2022. Any ways, I made it 2022 and I am still mobile but starting to see signs I will lose that fairly soon. Sorry for all the dates but maybe I shouldn't be that happy. But I am happy I made it to 2022 and will try to make it all they way to the end of it and see 2023. That is the goal.

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