Amyotrophic Lateral Sclerosis is a disease of the nervous system that causes problems with muscle control and function. Also called Lou Gehrig’s disease, it is considered a “rare disease” by national standards, but is nonetheless thought to impact 30,000 Americans at any given time. In the May issue of Maine magazine, I wrote about artist Jon Imber and the challenges he has faced as a result of his ALS diagnosis. For this show, we speak with Kate Gawler and Roy Bouchard, family members of Sue Gawler, an individual with ALS, and with Ron Hoffman of Compassionate Care ALS. We hope our conversation gives you insight into what it means to be impacted by this disease, and how we might use this lens when thinking about wellness in our own lives.
Kate Gawler is the sister of Sue Gawler, who has been living with ALS since 2010. Kate is a nurse working in women’s health at Maine Family Planning in Augusta. She and her husband Stu have 3 grown daughters.
Roy Bouchard is the husband of Sue Gawler, who has been living with ALS since 2010. Roy is a lakes biologist, now retired from the DEP, and is Sue’s main caregiver. He spent decades working all over Maine monitoring and improving water quality. He and Sue have a son and a daughter in their early twenties.
Ron Hoffman founded Compassionate Care ALS and has served as Executive Director for the past 10 years. As such he deals regularly in supporting people living with ALS including needs evaluation, instruction on ALS disease progression and end of life care. He facilitates and guides intimate discussions with ALS patients and their families who are nearing death or actively dying, the process of death and dying and the questions that arise, helps them examine their choices, and creates space for dialogue around their decisions.
Ron’s background includes studying with Roshi Joan Halifax of the Upaya Institute in the Compassionate Care of the Dying Program for professionals, and training in the Practice of Living and Dying with Meredith Little and Dr. Scott Eberle of the School of Lost Borders. He collaborates with Julie Yau on the Cultivating Compassion Education Series including Awakening to Living and Dying and regularly leads in-services and trainings for hospice workers, health care professionals and students. Ron also sits on the board of Men’s Leadership Alliance of Boulder, Colorado and is a past board member of the Hospice and Palliative Care Federation of Massachusetts. He regularly speaks at events on ALS and end of life care across the country.