Managing Parkinson’s medications is often a juggling act

Some days when I look at our bathroom closet, it resembles a miniature pharmacy. While my husband, Arman, takes significantly fewer oral medications since his deep brain stimulation surgery in 2017, he still averages about 30 pills a day. We have three large plastic bins containing medications, vitamins, supplements, and old prescriptions (possibly expired) that we can’t dispose of because … well, just in case.

The irony of many Parkinson’s medications is that some of the side effects can be as difficult to manage as the symptoms of the disease. When Arman was diagnosed with early-onset Parkinson’s in 2009, he was prescribed medication to help alleviate the painful stiffness in his muscles. However, he developed uncontrollable dyskinesia in his leg as a result and was in constant motion during his waking hours.

Another difficult Parkinson’s symptom that Arman experiences is fatigue. Although he was only 38 years old when he was diagnosed, he was constantly tired. He quickly learned that his Parkinson’s medications would increase that exhaustion tenfold. By the end of the day, keeping his eyes open to eat dinner could be nearly impossible.

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Managing medications is another challenge. Keeping track of refills, dealing with insurance coverage (or lack thereof), and sorting pills make for a big job. Arman and I sit down every two weeks to fill his daily medication organizer. While we do this, we note the refills needed. We also check to see if his physician needs to authorize said refills. We try to stay ahead to avoid running out of medicine, which would be a scary risk that we can’t afford to take.

Because Arman’s Parkinson’s is constantly progressing, we regularly evaluate his medications, dosages, and frequency for efficacy; we’re always in search of the perfect dosage and timing for him.

In addition, we must be mindful of the settings of his deep brain stimulator device. Like roses in a garden, the combination of medication and stimulation needs to be tended often. We work closely with our neurologist on any medication adjustments and device modifications. For Arman, it’s been an uphill battle to find the ideal balance — or, as we call it, a work in progress!

Parkinson’s isn’t just complicated; every patient has a unique version of the disease. It’s certainly not a one-size-fits-all condition. This fact can be pretty frustrating, as there’s no simple, cookie-cutter plan for treating symptoms. Even if you think you have a good medication regimen in place, things change, and new plans will need to be made.

Although treating Parkinson’s can be challenging, Arman and I feel grateful daily to have medications available to us. We’re also hopeful about all of the research and development that’s happening around the world. And maybe someday there will be a cure and no need for medicine at all!

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.