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What It's Like Knowing My Parkinson's Is Getting Worse

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Editor's Note

If you struggle with self-harm, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741. For a list of ways to cope with self-harm urges, visit this resource.

At 50 years old, I’ve lived with Parkinson’s for over 43 years. It has been challenging to say the least, with school, with relationships and with the ups and downs of life in general.

What is Parkinson’s Disease?

I was always a happy person to the outside world. “Here’s Matt, he’s amazing, all the things he has to put up with and he never complains.”

Inside, I was getting fed up. Not only was I struggling to walk, but the thought of not being able to communicate properly led me to self-harm. It felt good and it fulfilled a need to punish myself, to blame myself — it wasn’t anybody else’s fault, after all.

Surprisingly I often did this when I was lying on my bed in an off-state. I never hid what I had done. I usually blamed falling over. I often fell over, it was old news… nobody suspected I had hurt myself deliberately.

This destructive behavior continued, and would leave permanent reminders of my mood which I didn’t want. 

I have never really considered myself ill with a “so-called disease.” Inconvenient and frustrating, very much so. But a“disease”? No, that was for other people. Parkinson’s to me was just something that often gets in the way of what I am doing and also what I want to do — almost like an invisible, evil spirit.

I think in many respects some would consider this a stubborn attitude, but I believe I have actually found the secret of living well with Parkinson’s. Although my symptoms change and have changed pretty much minute by minute for years, I have never really considered the prospect of my Parkinson’s getting worse.

My job is going brilliantly so far this year — I have had speaking engagements in Spain, Belgium, Bulgaria, Japan, the U.S., London and Manchester. Life is good.

But my Parkinson’s is getting worse .

I know it, but do I accept it? My wife says I’m in denial. I’m not — I just choose to smile and struggle on. I’m a positive person — a “possibilist.” I am a provider for my family and I cannot allow that to change in the immediate future.

But it really hit me when I saw the facts in writing from my consultant.

Matthew’s Parkinson’s is worse.

He is at the optimum setting for his deep brain stimulation.

He is at increasing risk of falls which may cause serious injury.

These words are absolutely correct, of course. I have to wear elbow pads and knee pads so strong that MMA fighters endorse them.

I must admit I keep myself busy so I don’t have to think about it. My body hurts every day, but what else can I do? Plus, Parkinson’s has even exaggerated my feelings over the decades. I feel emotion very strongly and if I cannot do something for someone else I feel racked with guilt. I have to ask for help a lot, but you know what’s amazing? People in general are willing to help and I am and always will be eternally grateful. I extend that from family and friends to the general public .

Far from being greedy, self-important and narcissistic, every human being has the power to be kind to others and in my experience, whoever they are, being kind to someone else brings happiness to the soul .

My Parkinson’s getting worse has taught me to be patient, to be thankful and, most importantly, to be kind to others.

Getty image via Ridofranz

Originally published: October 18, 2019
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