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What It Feels Like to Be 'On' With Parkinson's Disease

After my post about “What it feels like to be off,” it is now time to flip the script and explain what it feels like to be “on.” As I described in my previous blog, the term “on” relates to if your medication is effectively working within your body and your symptoms are under control.  Similarly, if your medications are “off,” you’re not feeling the effects of the medication. This can be called a “dose failure” and is usually due to poor absorption of the drug. Unpredictable absorption of PD medications can make it challenging to make any type of plans during the day because as many Parkies know, every hour can be different.

Now before I go any further, please read the following disclaimer from my legal department:

*All events or experiences described in this blog are solely based on Perky Parkie’s life adventures. And while some Parkies might have similar events, we are all snowflakes and no individual can replicate her exact experiences. Besides, who would want to?  She is a bit nutty. Furthermore, although freakishly smart, Perky is unable to diagnose, treat or predict the progression of any individual’s Parkinson’s disease. Seek the advice of a movement disorder specialist, because that’s why they get paid the big bucks.  By continuing to read this blog, you are agreeing to the above disclaimer and the responsibility of enabling Perky’s addiction to fro-yo.

Blah, Blah, Blah. OK, now what does it feel like to be “on?” I can usually feel a dramatic shift when I first get up in the morning. After sleeping all night (hopefully), my body is depleted of dopamine, assuming that I didn’t get up in the middle of the night to take more Sinemet… or maybe to finish off that Ben and Jerry’s ice cream in my freezer. So my symptoms are angry and the first thing I need to do is to get the medication in my body and eat something. I can feel nauseous or worse if I take meds on an empty stomach. Trust me, there is no way to look cool, holding onto the toilet as you puke… I’ve tried.

After I have munched on some silver dollar flappy jacks with Nutella for breakfast, I start the waiting game. Not all Parkies experience “dose failure” (when your medications are not effective) due to protein, but it can happen. Amino acids (from dietary protein) can interfere with the uptake of levodopa into the brain. Just imagine your medications are in a war against the bacon you just shoved down your face hole. They are both competing for absorption with their little pitchforks and torches. So for me, I stay far away from protein when I am trying to get my meds to come “on.”

When will my Parkinson’s medications decide to work? I try to do something that is not stressful to allow full absorption of my drugs. I can’t rush my morning, because that will only make me slower. I also avoid anything that might cause me anxiety or emotional distress seeing as this can make my PD symptoms uncontrollable. Adrenaline is not a Parkie’s friend. So that makes fighting zombies, skydiving, or riding on the back of Pegasus a huge no-no. Until I am “on”… then watch out!

Then as I am playing “Candy Crush” on my iPad, I start to feel little twitches in my muscles. I can feel my body becoming fluid again, the rigidity is leaving my body. My mood begins to shift and instead of feeling sad, depressed or overwhelmed, I feel like I can handle anything that comes my way. I can take deep breaths and stretch out my muscles that have been stiff all night. I feel like a different person. I’m not just a person struggling with Parkinson’s disease anymore… I am the Perky Parkie! The video below shows you what it feels like when I am “on.”

The only thing that sucks is that this sensation is temporary. After an unpredictable amount of time, I can go “off” again or I can go “over” (as one of my readers puts it). Seeing as visuals tend to be helpful when trying to have someone understand what I’m experiencing, I have included some additional videos.

I will try to squeeze out every minute of my “on” time. I will make phone calls, run errands, pick up fro-yo, write a blog, exercise, clean up my apartment or walk my dog Crash. Projects that require my full attention get my “on” time, because I am more productive while my medications are at their full potential. Even though I say that exercise is just as important as a pill, sometimes, when you feel bad, it’s difficult to motivate yourself. So every day when my meds kick it, I get my fitness on! Get it gurlllll!

Then there are times that I might have too much dopamine in my body. This is when I am “over.” I struggle with dyskinesia, which is involuntary movements, can almost look like an uncoordinated dance. Which is totally not me, because I can rival Ginger Rogers on a good day. When it is severe, it’s uncomfortable and can draw unwanted attention. But truthfully, I would rather be slightly dyskinetic than rigid and slow… It just matches my bubbly, wiggly, goofy self.

Once you have an idea of how medication fluctuations can greatly impact a Parkie’s quality of life, you have taken the first step in beginning to understand the disease and all the magical things that come with it. So close your eyes… well first read the rest of this paragraph… now imagine trying to get through your typical day with your body, mind, and spirit flipping through the “on/off/over” times with no predictability… that is the life of a Parkie.

This story originally appeared on The Perky Parkie.

Getty photo by Anna Ismagilova