Parkinson’s Pet Peeve #2 – Nobody DIes From Parkinson’s

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.

7 Comments

  1. My neurologist told me these two things initially…

    1- PD doesn’t cause pain.

    2- You won’t die from PD…you’ll probably choke to death first.

    Since at the time (2016) he was considered the best neurologist in our state, you can understand how “encouraged” I felt after that!

    • Thanks Nana. Yeah some docs could use a little help with the bedside manner. Keep fighting the good fight. PD Stevie Ray

  2. Someone killed by a ricochet is just as dead as someone killed by a direct shot.

  3. You are ABSOLUTELY RIGHT. I detest these statements. I know the fact the PD is the cause of the muscle damage…which causes the heart muscles, the swallowing muscles, the bowel muscles to loss their ability to function….causing all these systems to fail ultimately means death. The lone and painful road towards death caused by PD is unspeakable. I firmly tell people my mom died from PD. There are no artificial ways to totally bypass this damage and live life as though you have a chronic yet manageable disease. I’m not even talking about the neurological damage that is basically not even mentioned when we discuss this disease, you only hear about the trimmers. This disease is so much more. Those who gallantly fight to have a good life in the face of this disease along with their caregivers/family are my heroes.

    • Thanks for the response Karen. I agree with you regarding the courage displayed by those who fight PD everyday. Thanks again. Sorry for the delayed response. I am still figuring out this software. Steve Walsh

  4. Not PD, but when my Mom was diagnosed with just six months to live, the Dr said, “she wont die of cancer.” It made me feel like he did not evrn care. So sad.

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