Prior to her diagnosis with ALS, the author worked as a NICU nurse at Morristown Medical Center in New Jersey and enjoyed various activities such as running, Pilates, golf, and skiing. She also loved traveling and spending time with friends and family. Since her diagnosis, her daily routine has drastically changed, with her husband of 24 years helping her with tasks such as preparing medications, administering them through a feeding tube, showering, dressing, and even doing her hair and makeup. She spends her mornings watching TV, catching up on social media, and sometimes exercising on a Peloton bike. A volunteer comes by to give her lunch, and her husband takes care of dinner and helps her get ready for bed.
The love and support the author has received from her family and friends since her diagnosis has been overwhelming and has made a significant impact on her life. Her teammates from a women’s hockey team she used to play with took the initiative to learn how to administer her feeding tube and often come by to give her lunch. Other friends, neighbors, and even strangers have also joined in to support her. The wider ALS community has been instrumental in providing her with connections, fundraising opportunities, and advocacy efforts. Various organizations, such as ALS United Greater New York and I Am ALS, have been supportive in many ways, and the author credits the ice bucket challenge for helping fund the development of the drug she takes.
People with ALS often tend to withdraw from society due to the physical changes caused by the disease, but their minds remain sharp. The author emphasizes the importance of support for individuals with ALS and their families, as the disease impacts everyone involved. While there is currently no cure for ALS, there have been significant advancements in research, access to care, and legislative changes in recent years. The author remains hopeful for the future, believing that progress can continue to be made in fighting the disease and improving the quality of life for those living with ALS. She hopes to create a new family story free from the devastation of ALS for her children and future generations.
