A Shared Battle against Multiple System Atrophy
Unexpectedly and in her sleep, Joanne Heard succumbed to Multiple System Atrophy on October 9, 2015. “Sudden Death,” one of the many syndromes of Multiple System Atrophy and a leading cause of death from the disease, took Joanne at age 69.
Nolan Heard, Joanne’s husband of 48 years, wrote in Joanne’s obituary that “Joanne struggled valiantly against a disease that ravaged her autonomic nervous system, and through it all, she remained brave, strong and determined. She woke up almost every morning with a smile, her mind as sharp and concise as it had ever been – and she was brilliant. She was never bedridden, perhaps because she simply, with sheer will and determination, refused.”
In an interview taped just days before her passing, Joanne and Nolan provided details that shed light on their valiant struggle with Multiple System Atrophy. They began by explaining that in 2009, Joanne was misdiagnosed with Parkinson’s disease – a common occurrence, as most doctors are unfamiliar with the much rarer and, in its early stages, very similar, Multiple System Atrophy. For four years, Joanne was treated unsuccessfully as a Parkinson’s patient.
Pursuit of various treatments led the couple in 2013 to a doctor who made the correct diagnosis: Multiple System Atrophy. The couple had never heard of it. “He handed us a piece of paper that described what a terrible disease it is,” said Nolan. Joanne said reading the description “left me numb.” Multiple System Atrophy had taken a great deal from them – Joanne mentioned her love of golf and dancing and sewing, now gone – and it became immediately clear that the disease would take still more.
Asked what Multiple System Atrophy could not take away from them, Joanne and Nolan immediately said, “Our love for each other,” explaining that caregiver and patient have never wavered in their mutual support. Joanne’s recounting showed that the disease also could not take away her concerns for her daughter and son, her granddaughter and grandson, and her mother, who was in good health. Joanne said they all “were my earliest thoughts” after the diagnosis.
Joanne and Nolan subsequently laid out the facts at a family meeting with their children and spouses. They explained that Joanne’s condition was much graver than they had known, and there is no cure. “They all took it well and were supportive and helpful,” said Nolan, with the family urging Joanne to fight to the best of her abilities.
The first move in that fight was turning for assistance to the MSA Coalition, which Nolan described as “a wonderful organization. It’s a great help to us. It’s a source we can turn to for information at any time, and turn to for support at any time. The annual conference gives us the opportunity to interact with other patients and caregivers. The research is very important, and it would be wonderful to think that someday people won’t have to go through what we’re going through.”
In accordance with Joanne’s wishes, her obituary encouraged donations to the MSA Coalition. Nolan wrote, “In honor of her memory, your gift will help fight this terrible, incurable, untreatable disease so that someday it may be stopped in its tracks, reversed, or perhaps prevented.”
To learn more about Multiple System Atrophy, The MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.
To learn more about how you can support The MSA Coalition’s efforts to battle this rare disorder and donate now, please visit The MSA Coalition CrowdRise Holiday Challenge page.