fbpx

I am Sally Stewart

living with ALS

Colorado


I refuse to believe this cruel and misunderstood disease is just bad luck. I manage my progression with belief that I can beat this awful fate, and staying busy doing what I love has been therapeutic in and of itself.

Hi, I’m Sally. I’m 33 years old and I live in Denver, Colorado.

I was diagnosed with ALS in September 2019. At that time, I was living in the Upper East Side of Manhattan in a 6th-floor walk-up apartment building. The symptoms began subtly in fall of 2018. I noticed I was becoming unusually fatigued at spin class, and I couldn’t run as quickly as expected. I thought I was just out of shape and needed to go to the gym more often to build up my endurance. Walking up the stairs to my apartment became steadily more difficult as fall turned into winter.

In December of 2018, I purchased a pair of new boots and noticed I was constantly tripping on my left foot. Soon after, my pace became slower and required more work to keep up with the fast walkers of New York City. One afternoon, I was trying to make the train to work, and slipped on the stairs down to the train platform and was overwhelmed with dread that something was terribly wrong. I noticed right after that my reflexes were extremely jumpy and overactive. I made an appointment with my local physician for the following week.

The doctor did a physical exam, and confirmed the extremely overactive and unusual reflex responses. He recommended I see a neurologist immediately.

At this point, I was noticing intense cramping in my calves in the middle of the night and twitching all throughout my legs.

I eventually saw four different neurologists over the course of 6 months of a plethora of tests and appointments. After my second EMG, ALS was mentioned as a possibility. Finally, I spoke to one of the top neurologists at Columbia University and she confirmed through a process of elimination that I had ALS.

I eventually was unable to continue working in my field (as a sommelier at a fine dining restaurant in Manhattan). The guests I was serving would notice my struggle walking, and would ask if I injured my leg or something of the sort. After a couple of months of dealing with all the emotional and physical tolls, I retreated to my apartment (with an elevator) and became a recluse for the next 3 months.

Navigating the financial requirements, treatment options and clinical trials was the most aggravating and depressing thing to have to do as someone already so emotionally taxed with a terminal disease diagnosis.

I decided to move to Denver in July of 2020, after Covid 19 presented an unusual opportunity for change. Together with my partner of 7 years, we opened up Denver Wine Merchant. I’ve chosen to pursue my dream and create the best wine experience possible.

I refuse to believe this cruel and misunderstood disease is just bad luck. I manage my progression with belief that I can beat this awful fate, and staying busy doing what I love has been therapeutic in and of itself.

In Her ALS Shoes: Share Your ALS Story

Raise awareness


More stories

See all stories

Back to Top

Join us for the 2024 Community Summit!

Join us in Washington DC from May 29th - June 2nd for the 3rd annual ALS Awareness Month flag display and inaugural Community Summit.

Learn more! Continue to the site