‘Get Busy Living, or Get Busy Dying’: Our Mantra in Life With Parkinson’s

Faced with the option of deep brain stimulation, a couple turns to a favorite quote

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by Jamie Askari |

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“I guess it comes down to a simple choice, really. Get busy living, or get busy dying.”

This famous quote is from one of the all-time greatest movies, “The Shawshank Redemption.” Andy (the main character, played by Tim Robbins) lives by this mantra to keep him going after being wrongfully convicted of murder and imprisoned. Andy hopes to escape the Shawshank Prison and start a new life in Mexico.

You may wonder how this quote relates to my column, “The Bright Side.”

There are several reasons, actually. One is because I have a special memory of when my nephew Kevin came over to watch this movie with my son. Kevin was so excited to share his favorite movie with his younger cousin Jake. My husband, Arman, of course had to watch with them. I always smile at the thought of the three of them bonding over this beautiful film.

Another reason this quote is so significant to me is because I’ve spoken its exact words many times to Arman. While he wasn’t wrongfully accused of double murder and imprisoned, he lives in a prison of his own called Parkinson’s disease. Unfortunately, he cannot escape it for Mexico, as Andy did.

If he can’t escape or run from Parkinson’s, how and why does this quote apply to our situation? There’s no known cure for this neurodegenerative disease, so what can he do to change things? How can he “get busy living”?

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Reflections 4 Years After Dad’s Deep Brain Stimulation for Parkinson’s

Thankfully, an exceptional neurologist has been overseeing Arman’s care since early in his diagnosis. He didn’t just offer up a bunch of pills and say, “See you in six months.” Instead, he provided us with hope and options.

For example, the neurologist immediately suggested deep brain stimulation (DBS), believing it would be a game changer for Arman, whose symptoms include slowness, stiffness, and severe dyskinesia, or uncontrolled, involuntary movements. He also encouraged Arman to get involved with clinical trials, and we were fortunate to have many available locally.

Arman wasn’t eager to undergo brain surgery. As a physician, he knew about all the possible complications and wasn’t convinced he was ready for an elective “brain skewering,” as he put it.

I had to respect his decision when he instead enrolled in a clinical trial for the Duodopa pump (now called Duopa). Simply put, this pump would deliver his Parkinson’s medication consistently through a tube directly into his stomach.

Arman had the pump for six years, during which time the U.S. Food and Drug Administration approved it. It was helpful to have the constant flow of medications in his system, but it still wasn’t the best solution for him since it worsened his dyskinesia (imagine constant Rockette-type kicking!).

At this point, Arman was in his mid-40s. We both had a lot of life left ahead of us. I knew he should take his doctor’s advice and strongly consider DBS — not just for him, but for our entire family. Why wouldn’t we consider DBS if it could be a “game changer,” as his neurologist had suggested? As I’d often told Arman, it was finally time to get busy living, or get busy dying.

So we decided to pursue DBS. It’s a long process of testing, evaluations, and planning. While it’s not easy to undergo the surgery, it’s also difficult being the patient’s family. The waiting game during the 12-hour surgery was long, but our kids and I made it through with the love and support of friends and family.

As our neurologist expected, DBS was indeed a game changer for Arman and his Parkinson’s. While it’s not perfect, it’s been beneficial. We’re all pleased with the results and thankful for the medical support team we have on our side.

I recently asked Arman if he thinks the quote “Get busy living, or get busy dying” still applies to his life after DBS. He explained that he has a new mantra, which is simply, “Get busy living.”

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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