One of the first things we were told about PD was that it was not a terminal illness. I think that was supposed to make us feel better but I’m not sure it did. Instead of a disease that shortens my husband’s lifespan, he has something that is chronic, debilitating, unpredictable and progressive and that will be with us for the rest of our time together. And now, a research study published in October states that the mortality rate from PD has risen 63% in the past 20 years. I am struggling to understand how a disease that isn’t fatal has a mortality rate? What do I do with this new information?

My father‘s cause of death was listed as pneumonia. He was only 73 years old and should have been able to survive had he not also been fighting Parkinson’s Disease. His cognitive symptoms made it difficult for him to understand and follow medical directions, his physical symptoms impacted his body’s ability to fight back against the inflammation in his lungs. Did he really die of pneumonia or should it have been attributed to his PD?

Which brings me to the real question, is it fair to say that Parkinson’s is not a fatal diagnosis? I think not. It would be interesting to know more about the people whose deaths were included in the study mentioned above. Did they die from PD related falls? Like my dad, was it a respiratory infection they just couldn’t overcome? More needs to be done to look into the correlations so we can protect against them. We need to know why this diagnosis puts my husband at a greater risk of death so we can both be proactive in his care. How can we fight against something we don’t fully understand?

To learn more, see the original report in Trends in Mortality From Parkinson Disease in the United States, 1999–2019 | Neurology, published by the American Academy of Neurology.