Mom with ALS Shares What It’s Like to Have Disease Run in Family

Before my diagnosis, I worked as a NICU nurse at Morristown Medical Center in New Jersey. I enjoyed running, Pilates, golf and skiing. I loved to travel and enjoy time with friends and family. Now, a typical day for me starts with my husband of 24 years, Andrew, preparing my medications and breakfast and administering it via my feeding tube. After that, he helps me shower and get dressed. He also does my hair and makeup. He prepares my lunch and then heads to work. I usually spend the morning watching TODAY and catching up on social media and email. Around noon a volunteer (often a teammate from my old women’s hockey team) comes to visit and give me lunch. The afternoons can feel long. I try to turn off the television and read or ride the Peloton. My husband gets home around five. He cooks for himself and the kids (they’re home from college right now) and prepares my dinner. We watch some TV and catch up. Then he gives me my evening meds and gets me ready for bed — helping me into my PJs, getting me settled comfortably and putting on my BiPAP mask. We try to stick to a routine so it doesn’t get too overwhelming. 

The love and support my family and friends have shown me has been overwhelming. I wish everyone had the opportunity to experience this when they are healthy. 

One example: I learned to play hockey as an adult with some women I met through my kids’ hockey team. We had a great time learning together. I stopped playing before my diagnosis, but my teammates didn’t forget me. When they heard what had happened, they took it upon themselves to learn how to administer a feeding through my feeding tube, and someone from the team often comes by to give me lunch, so my husband doesn’t have to leave work. Other friends have also joined in to help. 

I’ve received love and support from childhood friends, high school friends, work colleagues, neighbors and even strangers. The wider ALS community has also been amazing. Connecting with others who have the disease through social media, fundraising, advocacy and support groups has helped me feel less alone. ALS United Greater New York, I Am ALS, the ALS Therapy Development Institute, Team Gleason, the Healey Center for ALS at Massachusetts General Hospital and Synapticure have been supportive in so many ways. My friends and family recently got together to commemorate the 10th anniversary of the ice bucket challenge, which first went viral in August 2014. I don’t think it’s a stretch to say I would not be here if it weren’t for the original ice bucket challenge, since the money the challenge raised helped fund the development of the drug I take.

People with ALS tend to hide or fade away because of the devastating physical changes, but our minds are still sharp. I want people to know that this disease — even if it’s not familial ALS — impacts the entire family. We all need support. There might not be a cure for ALS right now, but that doesn’t mean it’s incurable. The past two years alone have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families. I know even more is possible. This disease might be coming for me, but I’m hopeful that the future will be different for my children. It’s time to end this terrible legacy and tell a new family story.