I am Jennifer Lewis

living with ALS

What I believed to be stress due to the pandemic, has been recently diagnosed as ALS.

Because of the pandemic I went back to being a Pastry Chef, as opposed to teaching because the salary was not enough due to small enrollment in school during Covid.

Returning to a 60 work week literally resorted in exhaustion and my being unable to speak. I was close to having an EMG test, but my loss of speech put me in the Emergency Room… and the 3 month journey into June and 2 different hospitals and multiple neurologists. They put a name on this: ALS Bulbar.

Shocking would be an understatement. I was a teacher, lecturer and educator for the last 17 years.

So I am teetering with bureaucracy and an upside down diagnosis.

I appreciate that IAMALS.ORG answers messages with care and concern.

I am a 58 year old woman, who has worked since I was 10 years old (paper route), so to find out I don’t get any money from Social Security is heart wrenching.

It just adds to the disappointing load with this diagnosis.

Thank you for reading this story.


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