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.
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Thankyou for clearly stating what I can expect from MSA in the future. I have recently been diagnosed by a neurologist. Feel positive as have reached grand age of 81 and remain able to carry on with day to day domestics. Only needing a walker when going out.
I am a msr patient,also.But l still was brave to discover every kinds of difficulty of man.The veterans never die but slowly fade away.
I am also a victim of multiple system atrophy.But l am optimistic,brave to face the evil attack.I believe the veterans never die but slowly fade away.
My sister, Donna Martin was diagnosed with MSA about a year ago. For the past few years she had been complaining of difficulty walking and navigating stairs. In 2018
she and her husband attended a family wedding in B.C. She was having difficulty walking and was tired but she appeared normal otherwise. Between July 2018 and now March 2021. She has lost a tremendous amount of weight, is bedridden, is aspirating and in continent.
She also underwent brain surgery in 2019 for. Brain aneurysims.
Throughout this all she had remained. Optimistic and in good spirits. She is very brave and a her to me.
As if this commentary she is hospilitized for aspiration phnemonia or phneumonitis. He oxygen saturation is sporadic and she will be having a feeding tube put in.
She and her husband will have been married for 45 years in September 2021. She was very much looking forward to a ceremony of a renewal of her marriage vows. She asked me to walk her down the aisle. I fear she may not be around for her 45th anniversary.
This is a devastating disease that robs her of all control of her body and its functions but leaves her mind intact and as sharp as ever. I don’t know why I am writing this except that I feel terribly sad and helpless for my sister. She had retired before the diagnosis and did not expect this in her retirement years nor did I.
Donna is a good person and a wonderful grandmother. She had insisted on everything possible that can be done to prolong her life so gvst she can have as much time with her grandchildren as possible. Even if it means being permanently in hospital or nursing home. Her husband Bruce is devastated and wants to care for her at home as long as he can and he was doing a wonderful job in a caregiver capacity.
Whether she will ever return home is doubtful and I am so sad for her.
There is no family history of this terrible disease and no words that I can express to comfort Donna, her husband Bruce or their children and grandchildren.
I only hope that the love I have for my sister and the love she has for her children, grandchildren and her husband will sustain all of us and give more time with the people she loves and who love her.
Hi Norman,
Sorry to hear your sister is facing this illness. For some ideas of ways to help her please view our resources for family and friends at this link:
https://www.multiplesystematrophy.org/msa-resources/how-to-support-a-loved-one-with-msa-and-their-family-a-few-suggestions-for-family-and-friends/
Best regards,
Pam