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Don’t let the F-er take you….

I’M JUST SAYIN….I’m not mad nor am I angry….its not my place to make judgement however,…..could you please stop or rather could you START celebrating the life of someone who had Parkinson’s when they died and do not say they died of Parkinson’s. You cannot die of Parkinson’s. It’s bad enough when most people are diagnosed with PD they immediately feel they are given a death sentence.

Please know that I am not making light of this horrible disease, its bad enough having it and all you read in social media are the comments…loss, loss, loss….its quite depressing for PD-ers who are trying, and can live a full life.

I know first hand this fucker disease can take you to a very dark place….I know, cause I’ve been there several times.

I know lack of sleep.

I know drooling.

I know the battle between putting thoughts into action can take sometime.

I know not being able to write.

I know the difficulty of speech.

I know the word “progression” is an unkind word.

I know the awful, heart wrenching excruciating, bone crushing pain that seeps into every fiber of your body and brings you crying into that dark place. It is a dark, very lonely place that only we know.

I know that the OFF switch is never a welcomed time…..HOWEVER….

I know that the ON switch is not a gift…it is earned and use it to its fullest.

I know that when my speech started to become difficult I started a Podcast.

I know that I take the liberty of taking a nap whenever I can.

I know I can type rather than write.

I know that my right foot and hand tremor consistently so I play tennis & golf.

I know I work out and eat healthy to slow down “progression“.

I know I can read and pace at the same time.

I know that tremors can add that “extra” something to the art you are working on…I call it therapy.

I know my family and friends could not care less if I was struggling to open a jar, they just allow the struggle, the alternative would not be worth it.

I know that I am as or actually more intelligent than before the diagnoses.

I know that I still add value to anything I decide to take on….I’m not stupid I just have a brain disease.

I know I get a huge kick out of people who verbally mistake my tremors as nervousness, or being cold and even drinking too much.

I know that the pain in the dark space is unrelenting so I cry and cry loud but, then drown it out with music till stillness takes over.

I know these things because I was diagnosed with Parkinson’s 10 years ago. I totally understand what could be down the road for me however, I do not dwell on it. I know for sure that Parkinson’s has given me the gift of time….how important time is, to do things that I would not experience if not for PD. I do not have time to be idle, even if I could..haha. There are so many great things to accomplish.

To be clear….this disease sucks !!!! This fucker will take you down and if you allow it, it will take you to that dark space. YOU own your PD not the F-er.

I know for sure that I was not given a death sentence so please, when I do die…do not say I died of Parkinson‘s and super please do not say “its such a loss”. I would much prefer you to say what a full and wonderful life I had and the Fucker lost!!


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Margie Burns-Kohn
Margie Burns-Kohn
Apr 06, 2022

Thank you Cathie. Like you, when I read comments that are endless “poor person” or “such a loss” makes me feel like we became worthless as a human when diagnosed….whereas, I know I have become “alive”.


Apr 06, 2022

Love this post! I totally agree and I am sick of people saying "poor person who has this or that". Life's challenges are what direct our purpose and where we find meaning and grow. They are how we get to know ourselves more and more. I absolutely love how you took each new affect of your opportunity to grow and find a new thing to learn! Extraordinary!

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