Alex Cavaliere was an up-and-coming lawyer and recently engaged to her fiancé when she found out she had amyotrophic lateral sclerosis, or ALS. Despite the shocking news she received at 27-years-old, Alex continues to blaze a trail forward for other young women diagnosed with the disease as Vice President of Her ALS Story. She credits her husband, family, friends, and three dogs and two cats for giving her the support needed to overcome the ups and downs of a progressive neurological condition.
Growing Up
I grew up in Bethany, Connecticut with my older sister Ashley and younger brother Tommy as a very talkative child. I enjoyed arts and crafts, going to Block Island with my family, and playing on our chestnut tree farm.
Becoming an Adult
After high school I went off to Marist College, where I graduated with a business degree in 2013, and then UCONN Law School, graduating in 2016. During law school, I would meet my current husband, Joe, and some of the best friends I have today. My first job after law school was as an associate in the Boston office of an international law firm. I loved having my own office for the first time, feeling like an adult, and being able to give back to my family and friends who had supported me. I also started a tradition with my sister of going on a yearly sister’s trip; we went to Costa Rica, Puerto Rico, and Miami together.
ALS Diagnostic Odyssey
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 Christmas time 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 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.
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.
Life with ALS
Now, nearly five years after the onset of my symptoms, I no longer can work, and I rely on a powered wheelchair to get around inside and out of my house. I have a hard time making myself understood while speaking, but my family and close friends can still understand me. I have very limited use of my hands, though I am still able to use one knuckle on my iPhone to text, email, and use social media. I can eat solid food, though slowly. I had a feeding tube inserted in January 2023 for when I need it. I participated in two drug trials at Massachusetts General Hospital and have tried many alternative medical options.
I love reading and listening to audiobooks. I am very passionate about my work as vice president at Her ALS Story. Our organization seeks to bring awareness for young women under 35 who are diagnosed with ALS, while also providing a community to help them connect and learn from their shared experiences.
I also love spending time with my family and fur babies. We have five pets: dogs Bert, Sophie and Luisa, and cats Debbie and Eliza. We have also fostered many cats and dogs over the years. On any given weekend you can find me hanging out with my family and friends outside.
A Supportive Community
While my story is similar to many others, I have had one constant that not all 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.
I’m so proud of the community of friends and family that I’ve built, and also the life that I’ve been able to live despite my diagnosis. I’ve been married to my husband Joe for nearly 5 years and I am very close to my parents, Tom and Lorri, and siblings, Ashley and Tommy. They are a huge part of my journey through ALS.
A Supportive Community
I use my Permobil F3 Corpus power wheelchair to get around. I love reclining back in my chair and taking a comfy nap with my dogs on top of me.
Rapid fire questions:
Favorite restaurant?
My favorite restaurant is Bar Mezzana in Boston. The last time I ate there was the night before my G-tube was inserted in January of 2023.
What is your favorite season and why?
Summertime, because it’s easier to get outside and participate in activities like festivals and fairs.
If you could have dinner with one person, dead or alive, who would it be?
My husband’s mom. She passed away before we met, and I would have loved to meet her.
What is your favorite movie of all time?
What We Do in the Shadows.
