With my Parkinson’s medications, it’s ‘shake, rattle, and roll’

Note: This column describes the author’s own experiences with various medications used to treat Parkinson’s disease. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

You know how when professional wrestlers or politicians take the stage, they’ll often play a signature introductory song? It’s usually a recognizable sound that lets audience members know they’re about to see the main event. They call it walk-on music, and it signals to the crowd that they’re in the presence of something big.

I have a signature sound when I enter a room: It sounds like pills rattling in a bottle.

OK, maybe other people can’t hear it, but I feel like every time I pick up my bag and head out the door, I clatter like a rattlesnake with all the pills I carry around. I take eight kinds of prescription medications — about 15 pills a day, which is fewer than I took before my deep brain stimulation surgery almost six years ago. Back then, the number was closer to 25 pills a day.

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Having to carry pills at all times is one of those little annoyances of Parkinson’s disease that no one warns you about. It’s tedious, and a lot of time is spent counting, sorting, and cutting pills. Next, they’re divided by the days of the week and loaded into various pillboxes, and stashes are left in the car, with a partner, on a keychain, and in every bag or purse we own. Sometimes, in addition to sounding like a pill bottle, I feel like my catchphrase is, “Wait, I need to grab my pills!”

Don’t get me wrong, I’m grateful for these pills that keep me going every day. But coordinating which medications to take and when is a constant experiment. My Parkinson’s is constantly evolving, along with the treatments. My doctor and I frequently discuss what the best combination might be. Plus, some drugs haven’t worked for me as well as they have for others, which is another consideration.

One drug in particular that wasn’t helpful to me is ropinirole, which is commonly used to treat restless leg syndrome and other Parkinson’s symptoms. As Parkinson’s News Today explains, “Ropinirole is a dopamine agonist, meaning it has similar properties to dopamine and can mimic some of its functions in the brain. Therefore, it can act as a substitute for the decreasing amounts of dopamine in the brain of Parkinson’s patients.”

In my experience with ropinirole, however, it tended to lower my brain’s sense of inhibition. That’s fine if we’re talking about tremors or unwanted leg movement. But it’s not so good if it reduces inhibitions regarding speaking one’s mind or exhibiting compulsive behaviors.

The Mayo Clinic warns that “some people who have used this medicine had unusual changes in their behavior, including an urge to gamble, spend money, binge eat, or an increased sex drive. Talk with your doctor if this is a concern for you.”

I’d never experienced something like that before, until I took ropinirole. I felt like I’d been taken over by someone else. I grew obsessed with where certain items were placed around the house, how the towels got folded, and other things I’d never worried about before. The compulsions disappeared when I stopped taking the medication. (Remember, don’t start or stop taking a medication without consulting with your doctors first.)

Another problematic one for me was Stalevo (carbidopa, levodopa, and entacapone). I’ve taken Sinemet (carbidopa and levodopa) for many years with no issues, but when we tried adding entacapone, I started feeling manic. I was up all night, unable to eat or drink, constantly moving, and my brain was overloaded. It felt like I was wired all day and night.

Luckily, in these instances, I was able to work with my care team to find alternatives and reverse the side effects. Having honest conversations with your doctors and paying attention to how you respond to changes in your treatment plan are essential. All of these pills can be challenging to manage, but life without them is so much worse. For me, finding the right mix and adjusting to changes is key.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.