“We don’t see things as they are, we see them as we are.” Anais Nin
“The true mystery of the world is the visible, not the invisible.” Oscar Wilde
Introduction: I have been reading and learning about the “normal heart” in Parkinson’s, ultimately trying to better understand the autonomic nervous system. While reading, I ran across the term Sudden Unexpected Death in Parkinson’s (SUDPAR). Please read it as a cautionary note, not so much as a warning. Always remember the more you learn and understand about your disorder now, the better you can be prepared for the future.
“Mystery creates wonder and wonder is the basis of man’s desire to understand.” Neil Armstrong
SUDPAR: We have learned a lot about Parkinson’s in the past several decades. We have a firmer understanding of the pathophysiology and what causes the disorder. We better understand the breadth and depth of non-motor symptoms from the prototypical motor symptoms of Parkinson’s. Treatment strategies have been evolving and now include exercise as a necessary treatment. Interestingly, while the pathology has explained much of the progression of Parkinson’s, the assessment risk of Parkinson’s-related deaths is slowly evolving. Pinter et al. (2015) reported the primary cause of death were pneumonia and cardiovascular disease; however, the ‘rate’ of death in Parkinson’s is increased over the aged-match non-Parkinson’s population. SUDPAR has been seen not as a concrete entity but as a question mark designation in the literature.
You will notice a short list of publications at the end of this post. Most of them arise from the same group in Sao Paulo, Brazil. Not much in the medical literature, and much of it seems to be partly conjecture (editorial and correspondence) more so than documented study to identify the cause of SUDPAR. However, the call to better understand something like SUDPAR has to begin somewhere.
“The world is full of magical things patiently waiting for our wits to grow sharper.” Bertrand Russell
The Mystery Behind SUDPAR: Zhang et al. (2018) published a long-term mortality prospective study for Parkinson’s. We know Parkinson’s is a slowly progressing chronic disorder, and as predicted, it is not associated with excess mortality over the first 10 years of the disease. Interestingly, even after 20 years with the disorder, there is only a moderate increase in mortality compared to the general population. They found that pneumonia was the leading cause of death. Linked to pneumonia in many of these patients was a defect in swallowing (dysphagia), which is linked to potentially having aspiration pneumonia. Decreased survival was also linked to advanced age and postural instability gait disorder (PIGD).
“I would rather live in a world where my life is surrounded by mystery than live in a world so small that my mind could comprehend it.” Harry Emerson Fosdick
Reducing the Risk of SUDPAR: Okay, the name contains sudden, unexpected, and death, right? Notably, the most common cause of SUDPAR appears to be abnormalities in the heart and lungs (including swallowing defects) and other autonomic nervous system defects, which makes sense. Therefore, based on the information from these publications, including the Davis Phinney Foundation, here are some suggestions to consider if you are at a ‘higher’ potential risk of SUDPAR:
•Understand your heart by getting a cardiologist’s evaluation of your cardiac function and a yearly physical with your internist/family practice physician.
•Since the heart-lung axis is involved, consider following the guidelines from the American Heart Association regarding a healthy heart diet, and try to reduce the best-known risk factors that promote heart disease, such as stopping smoking, reducing obesity, lowering high blood pressure, reducing levels of lipids and cholesterol, and limit alcohol consumption.
•Go back and re-read and consider following the suggestions in Steps #1 and #2.
•Drink more water. Neurologists who study SUDPAR suggest that being well-hydrated reduces the risk of SUDPAR.
•Do what you can to manage orthostatic hypotension (OH). Recall that OH is a sustained fall in blood pressure within three minutes of standing. OH can reduce blood flow to organs above the heart, mainly to the brain. If you feel faint when you stand up, although common in Parkinson’s, it must be managed better to lower your risk of SUDPAR.
•There is a dopamine agonist named domperidone (not approved in the U.S.), and there is a risk of increased blood pressure and heart rate increase in patients treated with both apomorphine and domperidone. Thus, it was shown domperidone may potentially be cardiotoxic. If possible, consider changing to another dopamine agonist to reduce the chance of heart problems.
•Finally, there is evidence that obstructive sleep apnea (OSA) needs to be added to the list of promoting SUDPAR. OSA is associated with cardiovascular mortality; thus, a Parkinson’s patient with OSA would increase their risk of SUDPAR. OSA is diagnosed by an overnight sleep study, and I would encourage anyone whose partner tells you how loud you snore or that you stop breathing while asleep, would suggest strongly that you have OSA. Thus, a CPAP machine can dramatically enhance your sleeping pattern and reduce your risk of SUDPAR.
“We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time.” T. S. Eliot
Educate Yourself About Risks of SUDPAR, and Please Do Not Panic: From reading all of these papers, SUDPAR appears linked to heart-lung-swallowing-sleep apnea issues. It may be asking a lot of you, but each of these issues can be monitored, and being aware of them could go a long way to improving your health and reducing the risk (occurrence) of SUDPAR.
I have a family history of cardiovascular problems, but so far, I am good. I do not have OH, but I do have a swallowing defect, and I do have OSA. I am doing my best to manage them all, even in the backdrop of Parkinson’s. Learn about SUDPAR but don’t freak out. Because you can do this, learn and (potentially) reduce the risk of SUDPAR.
“It is the dim haze of mystery that adds enchantment to pursuit.” Antoine Rivarol
Pinter, Bernadette, Anja Diem‐Zangerl, Gregor Karl Wenning, Christoph Scherfler, Willi Oberaigner, Klaus Seppi, and Werner Poewe. “Mortality in Parkinson’s disease: a 38‐year follow‐up study.” Movement Disorders 30, no. 2 (2015): 266-269.
Scorza, Fulvio A., Andrea C. do Carmo, Ana C. Fiorini, Mariana B. Nejm, Carla A. Scorza, Josef Finsterer, and Henrique B. Ferraz. “Sudden unexpected death in Parkinson’s disease (SUDPAR): a review of publications since the decade of the brain.” Clinics 72 (2017): 649-651.
Scorza, Fulvio A., Sergio Tufik, Carla A. Scorza, Monica Levy Andersen, and Esper A. Cavalheiro. “Sudden unexpected death in Parkinson’s disease (SUDPAR): sleep apnea increases risk of heart attack.” Sleep and Breathing 21, no. 4 (2017): 965-966.
Nejm, Mariana B., Monica L. Andersen, Sergio Tufik, Josef Finsterer, and Fulvio A. Scorza. “Sudden death in Parkinson’s disease: Unjustifiably forgotten.” Parkinsonism & Related Disorders 58 (2019): 88-89.
Scorza, Fulvio A., Marcia Guimarães-Marques, Mariana Nejm, Antônio Carlos G. de Almeida, Carla A. Scorza, Ana C. Fiorini, and Josef Finsterer. “Sudden unexpected death in Parkinson’s disease: Insights from clinical practice.” Clinics 77 (2022).
Zhang, Yueqi, Chunfang Wang, Ying Wang, Qin Xiao, Jun Liu, Jianfang Ma, Haiyan Zhou et al. “Mortality from Parkinson’s disease in China: Findings from a ten-year follow up study in Shanghai.” Parkinsonism & Related Disorders 55 (2018): 75-80.
“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle. The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt is awe, is as good as dead: his eyes are closed.” Albert Einstein
Cover Photo Image by Engin Akyurt from Pixabay
2 Replies to “Sudden Unexpected Death in Parkinson’s (SUDPAR)”
Hello Frank: I always enjoy learning more so I can better work with and help my friends. I especially love the quotes. All the best,
Thanks Taunya, hope you are doing great, best wishes, Frank