Dorothy Piazza has lived in John Day, Oregon since 1989. When she was diagnosed with ALS in October 2022, she worried that she would have to move somewhere else because of her rural location. When Care Services Coordinator Amber Smith came out for a home visit, she evaluated Dorothy’s home and together they determined that she could stay in her home. The relief of being able to age in her home of several decades was immense, especially in the face of such a distressing diagnosis. Our organization worked to find Dorothy a power wheelchair and delivered it from Bend to her home.
Amber Smith shared, “As Care Service Coordinators, our goal is to partner with people living with ALS and honor their unique situation. Dorothy and I talked about her long-term goals and what would bring her the best quality of life, and worked together to ensure her home could suit her and her changing needs. We strive to ensure our knowledge of local community resources empowers these decisions.”
Like many people living with ALS, it took years for doctors to diagnose Dorothy. Her symptoms began with cramps in her legs and then trouble walking. This decline in mobility was significant for Dorothy, as she has been an athlete her whole life, playing every sport available to her. Dorothy also has rheumatoid arthritis, which in some ways prepared her for a future where she uses a wheelchair, and some of her home had already been made accessible. In addition to remodeling her bathroom to accommodate a wheelchair, Dorothy has ensured that her newest garden beds are at a height where she can reach them from a wheelchair. Her four vegetable gardens feed Dorothy and her neighbors all year round- she grows arugula, spinach, beets, radishes, carrots, onions, potatoes, kale, tomatoes, zucchini, spaghetti squash, and strawberries. She loves sharing her garden harvests, the flavor is so much better than store-bought produce, and it presents an opportunity to continue learning. Dorothy is in a gardening 101 college class, and shared, “I’m a lifelong learner. Anyone can do anything. As long as you have the will”.
One thing Dorothy learned as she was bouncing around to different specialists looking for an answer to her symptoms was that a lot of medical specialists don’t know much about ALS. Now that Dorothy has learned about ALS, she has begun educating others on the disease. Dorothy brought a book called, “Amyotrophic Lateral Sclerosis: A Patient Care Guide for Clinicians” that she got from Amber to her physical therapy team, and once they’re done with it, they’re going to pass it on to the physicians. Her perspective is that if more physicians knew about ALS, the time it takes to get diagnoses would be much less. Time is of the essence for people with ALS, and it is extremely expensive to see a slew of specialists. Education about ALS is an important part of our mission, and we provide resources and support to healthcare professionals through one-on-one consultations, trainings, and information sharing. We also send information out to all the community-based neurology offices and healthcare providers within our database about the organization and updates on ALS, including our twice-yearly care services newsletter.
Despite her diagnosis, Dorothy is determined to take things one day at a time, and live life to the fullest. Her mom died from breast cancer at 43, which taught Dorothy that life is short, and every day is precious. She takes advantage of her good days, when her body feels strong, and makes plan Bs for the days she feels weak. The limited mobility brought on by her diagnosis allowed her to find the time to start writing children’s stories, a lifelong passion of hers as an educator and a grandmother. She hung up her snowshoes and hiking boots and she picked up her writing pen. Dorothy finds it critical to focus on what she can do, and not dwell on what she cannot. She says, “Until you’re dead, you’re very much alive.”
Dorothy is grateful for the organization and her relationship with Care Services Coordinator Amber Smith, saying, “You guys have been a huge support for me from diagnosis forward, helping me with those huge decisions of where I am going to go, what I can afford.” Dorothy loves her home in rural John Day Oregon, and with support from our Care Services team, she has the tools and resources she needs to continue living in her home of 34 years. These days, Dorothy can be found doing tai chi a few times a week, cultivating her garden, and writing her children’s book series.