A message from Amy Diego
Showing we care for one another is key to fighting ALS
I have the greatest, most caring people in my life, especially my husband Dante. We met at a restaurant we worked at and were friends for a while. When he finally asked me out, I wasn’t sure it was a date. He showed up looking so handsome in a pinstripe suit and with flowers. I remember we were both so nervous at dinner our mouths were as dry as a desert. The server filled our water glasses about ten times. I knew by the third date I would marry this man, and we did in 2005.
Life with this man has been a dream. When we started having kids, I was able to be home with them at the beginning. It was the greatest time, and I loved watching them navigate through life. Later, when I returned to work as a teacher, our family had many adventures, fun, and laughs together.
In 2019, my voice changed. It was deeper and sometimes the words didn’t come out. I was really scared when one of my hands wouldn't open and close as quickly as the other. I had many tests and went from doctor to doctor trying to find out what was going on. I finally decided to see an ear, nose and throat doctor. She gave me a referral, but I didn’t take a look until the next day when I went to the beach. When I saw what she wrote at the bottom, “Possible bulbar ALS,” I wept.
The news of an ALS diagnosis was devastating. But, my family rallied around me and formed a team of support. We found a community in the Golden West Chapter and together, we became “Amy’s Avengers.”
Through the Golden West Chapter, my family obtained a van with wheelchair access so I could attend doctors appointments. As I began to need durable medical equipment, those requests were swiftly met thanks to the Chapter’s loan programs and clinic partnerships. I attend the Chapter’s support groups and Chapter-supported multidisciplinary clinic of UCSF, and my family has found the community outreach events to be a rewarding experience that we can do together.
ALS has affected my family greatly. I can no longer dance with my daughter on TikTok, play ping pong with my son, or ride bikes with my family. I can’t help them with homework or speak quickly enough to get something funny out. I can’t wrap my arms around them for a hug or pucker my lips for a kiss. It is very hard. As a wife, I want to be a partner that gives as much to Dante as he gives to me. As a mom, I care about being there for the important events in my daughter’s and my son’s life. Their games, performances, wins, losses — I want to be there for them all. As parents, it is important for Dante and I that we do all that we can to take care of our family.
But our house is not all doom and gloom — we have fun! I have found resources for support and routines that bring me peace and joy. Family movie nights and dinners around our bed. Our dog May-may loves to lay around my leg. And I love when the kids come in and tell me about their day. My husband and I are closer than we ever were before. We enjoy every moment life gives us. In a way, ALS has brought us closer and has given us a greater appreciation for the time that we have together.
I participate in the Golden West Chapter because I want the public to know about the fight against ALS because it’s important. I want to show other people who are living with ALS they are not alone — there are resources around to care for and support them. I want to raise money for the scientists for research to find effective treatments and cures and to help financial support for care service programs that help families, like mine.
My world is still full of the most wonderful people who have become an incredible network of care and support. My daughter, my son, my sister-in-law Sarah Walsh (and Captain of team Amy's Avengers) and brother-in-law, Peter, the Golden West Chapter, and my sweetest, best caregiver, my husband, Dante, all give me the strength to fight on.
I am doing everything I can to defeat ALS, and I want to thank all of those beside me. We will avenge ALS together.
Living with ALS since 2019
Team Amy's Avengers
Here are three ways that you can advance the search for effective treatments and cures for ALS!