I am Robin R Leaper

I’m 52 years old. I have three children. My symptoms began in October 2022. I began to occasionally choke on foods I ate or liquids I drank. I attributed the choking to a surgery I just had and they had to use a breathing tube. Within a month a co-worker noticed slurred speech. I thought my slurred speech was due to the fact that I was under a lot of stress.

In April 2023, a friend was concerned with my voice change and suggested that I see a neurologist because my voice sounded similar to his grandpas and his grandpa had ALS. In April I also noticed that I began to have tongue fasciculations.

In May 2023 I saw the neurologist and had a CT scan and EMG. My neurologist narrowed it down to five possibilities and sent me to a specialist for further testing.

In July 2023 I was officially diagnosed with ALS. It was devastating news. I had a hard time thinking or talking about my diagnosis for several months without crying. It has become easier to share my diagnosis and answer questions for people but I still get very emotional when I think about my future and that there is no cure, nothing that will even allow me to live for years with the disease.

Because I have bulbar onset ALS I am not comfortable speaking in front of people anymore so I participate in research through the ALS clinic I attend and volunteer for community outreach events when I can to educate the public about ALS.