Parkinson’s Medication: My Frenemy?
When I was diagnosed with Parkinson’s disease on 28th July 2013, at 11 am (it’s hard to forget the exact details of such a life-altering diagnosis), I had to wait six months until I was prescribed a medication that would alleviate the pain and severity of my crippling symptoms. The medication I was prescribed was Sinimet.
The magic of the Parkinson's medication
As soon as Sinimet passed my lips, and entered my body, it worked its magic. Within 30-40 minutes, I remember feeling the first sense of ease or relief from the barbaric grip this disease had on my body. The intense rigidity softened a bit and slightly fluidity of movement returned to my limbs.
What was this witch-like voodoo trickery I had just experienced? Albeit the effect of this pill was very temporary. As soon as it worked, poof! Like, magic, its effectiveness wore off. Thus, I revert back to my pumpkin-like state.
Trial and error
As I tinkered with the dose and timings, I gained more and more pockets of relief. Over the next few years, I became adept at finely tuning and carefully and cautiously tinkering with my Sinimet doses to achieve that optimize reaching ‘sweet spot’.
The sweetness of the sweet spot
The ‘sweet spot’ is that point in the day when you have enough Levodopa in your bloodstream and brain, thus enabling you to function like a ‘normal’ human being. Whilst in this magical state, you (temporarily) forget that you have a neurodegenerative, chronic disease that has no cure AND you dupe outsiders into thinking that you are ‘normal.’
It is at this time, that loved ones will naively say, “Oh, but you look so well”. As if that is your normative state ... completely ignoring the awful night of broken sleep that you had, the crippling pain that your body was in when you woke up and the fact that it took you 20 minutes to pull your zipper up after you went the toilet in the afternoon.
The muscle memory of the body
It is this up down, yo-yo like fluctuating state which is the hardest thing to get your head round. You know that your body can act like it once did. That your limbs have that muscle memory (somewhere deep down) to be free and fluid as they were, prior to diagnosis. But it hurts and is hard to accept that this blissful state is now only achievable through the medical marvel of medication.
For some bewildering reasons (genetics? burnout? pesticides?) your body’s dopamine reserves were obliterated ... way before they should have been. Thus, leaving you with this constant stop-start mobility for the rest of your days.
Daily draining and dying
Whilst I am grateful that I still get the moments of magic, thanks to the magic medication available to me. It is so temporary, such illusionary trickery and so so impermanent ... that it hurts. I wish I could have more stability, more certainty. I wish that my days, hours, minutes and seconds could come with more predictability. It is draining and tiring… dying so many times a day and then coming back to life ... and then having to fit three hours of work into 30 minutes, to account for the ‘dead’ time I had.
Join the conversation