Parkinson’s Pet Peeve #2 – Nobody dies from Parkinson’s Disease
Steve Walsh 12/15/19
If you have been a PWP (person with Parkinson’s) or a caregiver for any length of time you have likely heard that nobody dies from Parkinson’s Disease (PD). In my case I first heard this phrase from my neurologist when he delivered my diagnosis. I suppose it was meant to be comforting but it wasn’t. Another phrase you are apt to hear (or read) is the following. You don’t die from PD, you die with PD. Once again while it may be accurate and perhaps well meaning it provides little or no comfort to the PWP. In fact, from my perspective it does exactly the opposite.
I should state here that I am not a medical professional. I am a PWP diagnosed just over five years ago (August 2014). The first few times I heard statements like this I didn’t think much of it. However, over time, I found that statements such as these were both irritating and frustrating. It seemed to me that these statements were downplaying or minimizing the impact of PD. While as I mentioned above it may be technically correct to say nobody dies from Parkinson’s, I believe we are confusing the Cause of Death (COD) with the Killer.
As I mentioned above, I am not a medical professional, but I’ve watched enough episodes of NCIS to know the difference between the COD and the Killer. On NCIS the COD may be multiple gunshot wounds or blunt force trauma, but do you think Gibbs stops there? Hell no he doesn’t! Simply determining COD does not identify the killer. The same is true for PD. COD may be pneumonia or heart failure but make no mistake, PD is the killer. Let me repeat – PARKINSON’S DISEASE IS THE KILLER.
In the past 14 months Parkinson’s Disease killed 4 members of our Rock Steady Boxing programs. To say that they died of heart failure or pneumonia or some other COD is to do them a disservice. In doing so we fail to recognize the true culprit – Parkinson’s Disease – and the courageous battle they fought against this unrelenting killer.