This Is My ALS seeks to engage both the ALS and non-ALS community by showcasing a lighter side of living with ALS. ALS takes so much from those it touches, but we will not let it take our sense of humor. Our hope is to inspire those who follow us to help the ALS community fight for a cure.

 

My Story

In early August of 2019, at age 27, I started to notice a slurring in my speech and a sluggishness in my tongue. I described it as a feeling of “marbles in my mouth.” Others around me, even my then-fiancé, Joe, said they didn’t notice any difference in my speech. But I was sure something was wrong. A neurologist I saw in fall of 2019 ordered an MRI. When it came back normal, she said not to worry and sent me on my way. By that time, I was also experiencing some stiffness in my left leg, and I had an unexplained fall in the house. But it wasn’t until Christmastime when a nurse friend, home for the holidays, told me I should get a second opinion. I went with my fiancé to a different neurologist on January 17, 2020, an appointment that changed my life forever.

The neurologist immediately connected my slowed speech, leg pain, normal MRI, and lack of any other symptoms like trauma or disease. He gave me a preliminary diagnosis of what he called a “progressive neuromuscular disorder.” As a previously healthy 28 year old, I had really never considered that phrase before. What did it mean for my condition to be progressive? He told me some further testing would be needed, and that it would be best not to worry in the meantime. Of course, over the panicked next hours and days, it was all we could do to keep from Googling or WebMD’ing my symptoms and the medical jargon the doctor had used. My husband tried to insulate me from any research, or questions from family, about my tentative diagnosis. All we could do was hope that whatever the neurological and blood tests showed, it wasn’t ALS.

Over the next several months, I lived in a bizarre medical limbo. Doctors don’t like to formally diagnose neuromuscular disorders until months or even years after the onset of symptoms, allowing them to rule out other diagnoses in the meantime. The most anyone could say was that my loss of function in my tongue and mouth, and the stiffness in my leg, would continue and progress to other parts of my body. How quickly was anyone’s guess.

In July 2020, two months before my wedding, the results from an electromyogram, or EMG - a test of how well the nerves conduct electrical signals - provided my doctors with enough evidence to make a diagnosis of ALS. After a year of wondering what was wrong with me and what my life was going to look like, I finally had my answer. While I left that appointment in tears, I felt strangely relieved. The thing I was fighting finally had a name.

In Spring of 2021 I completed a six month trial of an experimental drug (one of several) that researchers hope will be effective at slowing ALS’s symptoms. I am now a patient at BodyScience, a functional medicine clinic, focusing on neurodegenerative diseases in Miami, FL.

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Now, over two and a half years after the onset of my symptoms, I no longer am able to work, I have trouble walking long distances and rely on a walker inside and outside the house. I can make myself understood when speaking, but I talk much more slowly and sometimes feel out of breath. Talking on the phone can be physically exhausting for me. At some point, I will need to start using a wheelchair and will need to rely on assistive technology to help me type and speak. But for now I swim and do physical therapy, I run errands, and I visit family and friends. I help take care of our two dogs and two cats.

While my story is similar to many others, I have had one constant that not all of my peers with ALS share. Ever since my diagnosis, I’ve received complete and unconditional support from a strong network of colleagues, family, and friends.

Meet the Team

  • Alexandra Cavaliere Gasser

    FOUNDER & ALS PATIENT

  • Joseph Gasser

    HUSBAND & MR. DO EVERYTHING

  • SOPHIE GASSER

    DIRECTOR OF INCLUSION

  • BERT GASSER

    BRAND MANAGER

  • DEBORAH GASSER

    DIRECTOR OF HUMAN RESOURCES

  • ELIZA GASSER

    CUSTOMER SERVICE MANAGER