Parkinson’s Awareness — Treatment for All Who Need It

April is Parkinson’s awareness month. I guess I could have mentioned this earlier in the month, but it isn’t like I wasn’t already fully aware.

Billy Connolly said, “I have Parkinson’s Disease, and I wish he would take it back.” I couldn’t agree more. I don’t like what it does to me now, and while I’m pretty good at living one day at a time, the future is daunting. Typically, I write about life experiences that include Parkinson’s. I don’t want to be defined as the “guy with Parkinson’s”, but I am ok being a “guy that also has Parkinson’s”.

I have previously shared that I consider myself lucky. This is not false bravado. I am lucky. For one, I have access to the best treatments available.

I can’t imagine my life without access to Levodopa. It’s been the main prescription and primary treatment for Parkinson’s sufferers for over 50 years. It’s not perfect. It comes with side effects that can include hallucinations and dyskinesia (involuntary muscle movements), but based what happens if I don’t take it on time, I know it works.

Since my diagnosis in 2015, I have been increasing my Levodopa intake to maintain its effectiveness. I have doubled my dosage in the past two years, and now I take it every three hours. I also take a number of other drugs to manage my many symptoms. All of these are paid for by a benefit plan.

I am on a waiting list to get Deep Brain Stimulation surgery (DBS) within the next two years. This should reduce my dependence on Levodopa. https://youtu.be/ZHm8zm2pauk. This treatment was developed using research dollars. Now we need more doctors trained to do this work.

I am lucky to have had regular visits with a family doctor. He was able to diagnose me early. He first noticed a change in my facial expression, or more accurately a lack of expression. This is a common early sign. It is medically called masking and more informally referred to as “Daddy’s grumpy face”. How long would it have taken to get diagnosed and start treatment if I had gone to a clinic or an emergency room instead? How much longer would I have had to deal with increased levels of anxiety, muscle cramping, fatigue, frozen shoulder, constipation, insomnia, and stiffness? Without an accurate diagnosis, would I have taken the pain as a message from my body to stop moving? I suspect this is the reaction of many people, but the opposite is needed. Parkinson’s patients must get moving and keep moving.

I am lucky to live in one of 19 out of 20 countries in the G20 that has universal healthcare.

I am lucky I have access to insurance benefits, so I am not forced to work.

I am lucky that when speaking softly and slurring my words, no one in the medical system has ever denied me care thinking I was drunk as has happened far too often and has led to real harm to First Nations people.

With all this in mind, in honour of Parkinson’s Awareness month, I ask that you be Parkinson’s aware by;

Thank you for your support.

Originally published at https://shakeitupdotonline.wpcomstaging.com on April 30, 2021.

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I am a writer that happens to have Parkinson’s. I write about my experiences with a balance of humour, optimism and honesty.

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John Matterson

John Matterson

I am a writer that happens to have Parkinson’s. I write about my experiences with a balance of humour, optimism and honesty.

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