Frustrating Fluctuations in (dis)Ability

If I had a nickel for every time I heard the words, "You have Parkinson’s disease? But you look fine/normal/human." (Choose your preferred term.) Well then, I would be able to go to the dollar store and have a shopping spree.

*Laughs at her own terrible joke*

Varies from person to person

Seriously though, all (bad) jokes aside. From my experience, I feel that it is hard to understand the full impact of having Parkinson’s disease, especially from an outsider's perspective.

Many people only see glimpses of me, and the strong likelihood is that those glimpses are when I am vertical and my medication is working. But, for me the fluctuations in my symptoms and my mobility are so stark and so severe, that is almost shocking and unbelievable.

Commonly misunderstood

This is the misunderstood aspect of Parkinson’s disease. You cannot know this unless you really know this. No textbook or Youtube video can show you this crazy contrast to its full extent. So, my experience has taught me that in each Parkinson’s person, there really is no archetypal example of what it truly means to have Parkinson’s disease.

The way the symptoms present themselves and the personal management approach for each of us is quite unique. That is, those who are all so lucky enough to be members of the elite group of people, fondly known as the Parkinson’s People Party (PPP) is quite unique. (This is just a figment of my imagination, that I have affectionately devised in my mind. Sadly, the PPP does not really exist.)

Yet, we are all homogeneously lumped under the gargantuan umbrella of "Parkinsonism," but what that translates to on the ground level is actually very diverse and specific.

Moving Mountains to merely mumbling

So, in my experience, I specifically struggle with severe fluctuations in my motor ability. It ranges from being able to move (only metaphorical, of course) mountains when my medication is working ... to barely being able to utter or mumble the word mountain when the medication stops working. I become a feeble, weak shadow of my former self. Unrecognizable.

The limitations of Levodopa

For me, this is the hardest part of this disease to accept. It is the most debilitating and scary part of this disease. The medication (Levodopa) is fantastic, but it is oh-so severely limited. However, there is only a rough degree of reliability on it ... and I mean really, really rough.

From each medication dose I take, I get about 2 hours of get-up and go-go-gumption in my tank - and that is if I am lucky. It is not an exact science. So, for this reason, every second counts. Sometimes, I impose a great degree of pressure on myself. I do not want to squander or waste this precious on-time.

My inner dialogue screams at me that I have to maximize productivity just in case the next bunch of drugs fail and do not work. For me sadly, not every dart hits the bullseye. (Dart= drug. Bullseye= dopamine receptors).

Hopeless when I am dopeless

Sometimes I feel like I am a human yo-yo. Up and down. All day long. Up, when the meds are working, down when they stop working (or should that be vice versa)? It feels like there is no stability, no even keel. The exhaustion is overwhelming on particularly bad days.

The relentless stop-start ... stop-start ... stop-stop-stop ... oh wait, STAAAARRTT! On these days, I become frazzled and the fatigue at the end of the day and on the next day is the heavy price I pay. My fatigue is fatigued. So, that leaves me utterly extinguished and empty.

I have nothing to give to myself or anyone else. I am left utterly hopeless because I am no dopeless. That is until I get my next whoosh of delightful dopamine, of course.