Stand with Melody in Her ALS Journey

My friend, Melody, was diagnosed with ALS (also known as Lou Gehrig’s disease) in March of 2023. ALS is a progressive disease of the brain and spinal cord that ultimately leaves patients unable to move, speak, eat or breathe, all while remaining cognitively intact. It is a devastating diagnosis and there is currently no “cure”. But people with this disease have been organizing and advocating for themselves more powerfully in the last few years and they have seen the quality of their lives improve. With modifications to their homes and surroundings, ALS patients and their families can continue to have profound and meaningful experiences even as the ability to function diminishes.

Melody has faced her diagnosis with grace, and she continues to face the world with the joy and loving kindness that she has always generously shared with the world. Melody’s husband, Frank, and their daughters, Joi and Hope, are standing with her through this whole ordeal and preparing for what the future holds. Melody has managed to work full time up until now as a chaplain in a rehab and recovery center, helping people who are struggling with addiction. In the last few weeks, Melody’s mobility has declined, and fatigue has convinced her that she needs to step back from her full-time pace as a chaplain. She has continued to work part-time to help her patients because she loves them, and she loves her work. Due to the advancement of ALS, she will retire the end of July 2024. Melody and Frank have always been a two-income family so this feels like a precarious moment for them.

Those of you who know Melody know just how generous and caring she is. She is deeply passionate and has always advocated for others – just a few weeks ago she helped organize a fundraiser to help others diagnosed with ALS. From her job to her personal life, she makes the world a better place, and has always made everyone feel welcome. She has kept us laughing and engaged with her deep compassion and irrepressible joie de vivre.

As she enters this new phase of her life, we know that many modifications to her home will be necessary to keep Melody at home and comfortable. Specifically, she may need a stairlift, widened doorways, and ramps for wheelchairs or other assistive devices. Melody will also likely need home health aides, such as certified nursing assistants, even when she is considered a hospice patient. Once Melody is considered a hospice patient, insurance will pay for some in-home care, but until that time they will not cover it. For ALS patients, this could be a long interval, when the family will be responsible for crucial care. CNAs in private duty are typically paid $20-25 per hour, which will add up quickly for a family paying out of pocket and on a reduced income.

We're hoping that through the generosity of friends and extended family, we can help Melody, Frank, Joi, and Hope by ensuring that Melody is able to get the care she needs at home and be as comfortable as possible during the time ahead.

I know that as thrifty and humble people, Melody and her family feel awkward asking for support, but so many wonderful people have asked how they can help. This is how!

Thank you for all of your love, support, prayers, and positive thoughts. They appreciate it and are deeply, deeply grateful for the incredible extended network of friends and family that Melody has!