Before being diagnosed with ALS, the author worked as a NICU nurse enjoys running, Pilates, golf, skiing, traveling, and spending time with friends and family. Now, a typical day for her starts with her husband taking care of her medications and feeding via a tube, helping her with daily tasks, and preparing meals. She spends her days watching TV, reading, riding the Peloton, and receiving visits from volunteers. Her family and friends have shown overwhelming love and support, with her old women’s hockey teammates even learning how to administer her feeding tube and ensuring she gets lunch regularly.
The author has found immense support from various sources, including childhood friends, colleagues, neighbors, and strangers. The ALS community, including organizations such as ALS United Greater New York, I Am ALS, and others, has been incredibly supportive. The author credits the ice bucket challenge for raising funds that helped develop the drug she takes, which has been critical in her treatment. She emphasizes the need for support for families affected by ALS and the importance of raising awareness about the disease to ensure advancements in research and care.
Despite the physical challenges of ALS, the author stresses that people with the disease maintain sharp minds and deserve to be seen and heard. She highlights the impact of ALS on entire families and the need for ongoing support. While there is currently no cure for ALS, recent years have seen significant advancements in research and access to care. The author remains hopeful for the future and is determined to create a new family story free from the burden of ALS for her children.
In the face of her diagnosis, the author continues to find moments of joy and connection through the love and support of her family, friends, and the broader ALS community. She cherishes the memories of playing hockey with her teammates and the ongoing assistance they provide. The author’s resilience and hope for a brighter future shine through as she navigates the challenges of living with ALS while advocating for progress in research, care, and support for all those affected by the disease. She remains determined to make a difference and rewrite the narrative of ALS for future generations.
