The Love and Limitations of Levodopa: From a Levodopa Junkie

What role does levodopa play in my Parkinson’s disease management?

If I was a car, levodopa would be my gas. It fuels and powers my broken body in a way that nothing else can. A car can do diddly-squat without gas in its tank. Similarly, I can barely write or utter the word "diddly-squat" without levodopa coursing through my body’s electrical circuitry.

The voodoo-like trickery that the medication performs is very commendable. It turns me from a barely functioning, mumbling zombie into a fully-fledged productive, able-bodied, and competent human DO-ing - sorry, I meant human BE-ing.

What would I like to say to levodopa?

So, thank you (a million, gazillion times) to the clever wee scientists who stumbled across this modern miracle. It has been the gold standard in prescription medication for Parkinson’s disease since around the 1960s.1

This raises 2 questions for me:

  1. How did Parkinson’s patients manage their debilitating symptoms prior to levodopa?
  2. Why have advancements in medical alternatives been so slow since then?

What have time and experience taught me?

With the gift of time, experience, and wisdom, I now thankfully recognize that this medication is not a magic cure. Nor does it purport to be.

It is just a synthetic chemical thingumajig, which is very effective in controlling, hiding, and masking my Parkinson’s disease symptoms (on most days). It does this oh-so-noble thing of (temporarily) duping me and those around me into thinking I am semi-normal - whatever that over-used word "normal" may mean.

How effective is levodopa in managing my symptoms?

However, despite its awesome efficacy and magic powers. Parkinson’s disease is a formidable nemesis and thus it valiantly rages on inside me. Determined to make headway and gain more territory, or in my case, destroy any remaining dopamine receptors that may still be brave enough (or is that stupid enough?) to remain alive in me.

So, with experience, I have learned that lovely levodopa is not effective a 100 percent of the time. But, nor should it be.

Is it realistic for it to work all the time?

So, for this reason, I have been forced to accept that I need to be realistic in managing my expectations. I also need to accept and recognize that the nature of this enemy is degenerative.

That means it will get worse and increase in severity over time. Yes, perhaps I can slow down its progression by making sensible lifestyle choices now ... but it will eventually and inevitably get worse.

So, whilst medication plays a key role in providing me with a good quality of life. Eventually, the medication may not be a match for the pesky Parkinator. Admittedly, this realization conjures a great sense of dread and fear within me.

What good does worrying do?

I find myself falling into this mental mind trap, often. Unknowingly my thoughts will dawdle, divert, and distract me ... and crash, bang, and wallop! I find myself prophesizing and predicting the doom and gloom trajectory of how badly this Parkinson’s disease will deteriorate.

In the past, it unknowingly became a destructive mental habitual loop. This proved to be particularly worrying because it is not a positive or beneficial thought loop to have. It just made a bad situation that much worse.

How does my brain hurt me, rather than help me?

As much as I have tried to manage this mental mind pattern of thinking, it still, unbeknownst to me, manages to rear its ugly head and invade my brain. Old habits die hard, right?

So, rather than enjoying my present moment and ability, I find my brain annoyingly whirs, pushes the fast-fast forward button, skips all the good stuff, and zooms to an image of me sitting in a wheelchair, drooling, whilst staring gormlessly into space.

This is as bad as it gets for my oh-so-dramatic, prone-to-catastrophizing brain. This mental imagery has ruined a good mood or moment on many occasions. Self-inflicted and self-sabotage of the worse kind.

What is my inner dialogue during these tricky times?

When these unwanted and unhelpful brain bombardment attacks use to happen in the beginning years of this Parkinson’s disease diagnosis. My world would crumble. I have no shame in admitting that at that time I had no resilience whatsoever. I had not cultivated any mental fortitude or ability to soothe myself and lovingly coax myself out of the cesspit of doom and gloom.

It was relentless and incessant ... hovering around me every day. Demanding to be seen and acknowledged, while slowly suffocating me and extinguishing the joy from my life.

What did the inner dialogue say?

The deafening loop would roar in my head the same scary fears. Hypothetical "what if" scenarios for which there were no easy answers, and from which there was no escape.

"Why are the meds not working?"

*wails*

"I can’t do this; I don’t want to do this."

"This is more than I can deal with. I want out. I don’t want to be here anymore ... in this crummy broken body."

These days and moments were very hard to deal with. Hard for me and hard for my family. To see someone so defeated and desperately desolate was very painful.

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