“How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder?”

– Me

Over the past month or so, I have noticed that the tremor in my left hand/arm has gotten worse.

I don’t like this.

At the first indication, I chalked it up to not getting enough sleep, eating too much sugar, or not getting enough exercise. But even as I have attempted to correct for these, the tremor is persisting. My MDS (Movement Disorder Specialist) has suggested upping my meds from 3 pills/day to 4 pills/day.

I don’t like this either.

Generally, since D-day in 2017 (Diagnosis Day), my symptoms have remained rather steady. The dosage of levodopa has not changed in all that time. And now, I am facing the reality of Parkinson’s…it is progressive.

I am incredibly resistant to the idea of taking more Levodopa;

1. The side effects of increased and continued use of Levodopa are not pretty. The nastiest is the development of Dyskinesia (involuntary purposeless movements). Not good. I have already observed some mild Dyskinetic movements – I don’t like it. How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder? Read more here: Medication side effects
2. The idea of taking pills four times a day is ridiculous. Currently I’m on an 8-2-8 clock schedule. Upping would mean 8-12-4-8. Add to this the requirement to take meds either 30 minutes prior or 2 hours after protein intake and I think I’ll need a personal assistant! Seems the entire day is planned around meds. I do have a handy little med app on my phone to remind me and I’ve stashed pills everywhere to try to make it easy…but it’s not.
3. Ultimately, the hesitancy is rooted in my realization that things are progressing (not the good kind of progress). I am a competitive person (some of you are giggling right now because you’ve witnessed this firsthand). I do not want to ‘give in’ or lose to PD.

Contemplating the addition of that tiny extra pill for my brain is a mind game where there is no winner!