“Friendship is a wildly underrated medication” – Anna Deavare Smith

I started taking Levodopa five years ago immediately following diagnosis. Right from the start, I didn’t notice a significant impact. Other PWP spoke about their on/off times and how they watch the clock in anticipation of their next dose and intended relief. I have never felt that way – in fact, if I didn’t have a reminder set on my phone, I might likely forget to take my meds! I’ve mentioned this to my neurologist, but she felt that the meds were having an impact and that my low dose was beneficial.

I have often toyed with the thought of going off them just to see how they work or don’t work, but have never followed through with my curiosity.

Well, purely by accident, this curiosity was unfortunately answered.

I went away for a weekend with the best-ever lifelong friends and when I looked to take my 8pm dose, I was alarmed to realize that I had forgotten my pill pack. Oh my! I kept this information to myself. I knew this wasn’t life-threatening and I also didn’t want to alarm my friends. The meds were a two-hour drive away and I didn’t want to upset the weekend.

All remained relatively ‘normal’ for the first 24 hours. Time was spent hiking outdoors in the sunshine with two of my favourite people. Laughter, sunshine, and exercise are all producers of natural dopamine which is what I will credit for the initial feeling of normalcy. Without these, I predict I would have felt the ‘off’ period much sooner. But after a full day unmedicated, all hell broke loose.

I did not sleep…all night long. My left side was tremoring just enough to wreak havoc on my ability to calm. By morning, my body was crying for dopamine. I was emotional, stressed, and physically and mentally exhausted.

Upon arriving home, I took my meds and within 30 minutes, calm was restored.

Did I survive? Yes

Did I have fun? Absolutely

Do I need medication? 100%

Now I know.