Whether you’re newly diagnosed with Parkinson’s or caring for someone who is, here’s why managing “off periods” should be a key concern — and being aware of the latest breakthroughs can help you do it.
Parkinson’s disease is a neurodegenerative disorder that gradually kills a person’s brain cells over time.
It’s a condition that has vexed researchers for years. There’s no known cure and some of the exact causes are still being investigated.
Each year, around 50,000 people are diagnosed with the condition in the United States and roughly half a million have it in total, according to the National Institutes of Health.
Common symptoms include tremors, physical rigidity, extreme slowness of a person’s movements, and impairments to balance.
In addition to these, people living with Parkinson’s disease experience another challenge the average person might not even realize is a key concern for those living with the condition: off periods.
What are off periods?
“These off periods are a time when dopamine is going low in the brain, and when medicine — usually [the drug] levodopa, which is the ‘gold standard’ oral pill — is wearing off or not kicking in when it should be,” Dr. Robert Hauser, director of the Parkinson’s & Movement Disorder Center and a professor in the college of medicine neurology at University of California, San Francisco, told Healthline.
Symptoms such as the loss of motor function can return during off periods. This can be dangerous, particularly if an off period strikes when a person is walking up the steps to their front door or is in a similar situation.
For those who are newly-diagnosed (or those caring for someone who is), off periods can present a major obstacle to overcome if they aren’t aware of the risks and the need to maintain a strict medication schedule.AD
The reality of managing symptoms
Dr. Benjamin Walter, of the Center for Neuro-Restoration at Cleveland Clinic, said that the average person isn’t accustomed to the strict regimen of multiple medications a day that’s part of everyday life for people with Parkinson’s.
“Most people feel burdened just taking an antibiotic, which can be difficult to remember. Now, imagine someone who has Parkinson’s — the minimal dosing is usually three times a day,” Walter said.
He explained that the need to frequently take medication is because it usually only lasts in a person’s bloodstream for 90 minutes.
“Once the medication gets into the brain, it’s converted to dopamine and stored in dopamine neurons, which recycles and reuses that medication over and over until it is depleted. Now, it’s not uncommon to have patients on meds four or five times a day,” he said.
Walter stressed that when discussing Parkinson’s and off periods, no two people are the same.
Parkinson’s is a highly variable disease. Some people will experience different motor symptoms and tremors than others.
For example, some people freeze when they walk, while others don’t.
He said the off periods can be terrifying for many people and also cause a different symptom — anxiety.
“You can suddenly become very anxious when the Parkinson’s medication wears off. It depends on what it is. If it’s a mobility issue in a patient, they should be more careful in noticing their medications wearing off and be careful about trying to do things that require dexterity and mobility,” he said.
Walter said that it’s important for those taking care of a person with Parkinson’s to understand how dangerous off periods can be.
“If you have a patient with Parkinson’s, you have to be aware that they can suddenly go from a state that is fully functional to an off state with very poor function,” Walter cautioned. “Now, that person is at risk for falls and choking on food and things that can be fatal.”
He stressed the importance of making sure patients get their medications on schedule “so that everything is kept in working order.”
He added, “If you’re starting to notice times when your meds aren’t working on a consistent basis, then you should be talking to your doctor about adjusting the medications.”
Perfecting the dose of the medication needed to effectively treat off periods has proven difficult for many patients.
However, a new study published in Nature Communications may have revealed one reason why.
Researchers discovered that common gut bacteria actually process the Parkinson’s drug levodopa, essentially sucking away its intended effectiveness.
Lead author S. (Sahar) El Aidy, PhD, assistant professor at the University of Groningen in the Netherlands, wrote in an email to Healthline that these findings may explain why the drug’s effectiveness can vary greatly from patient to patient.
Some people may need three doses of the drug to be effective, while others may need more.
“This is very important as it highlights the role of the bacterial metabolism in the effectiveness of medications, an area of research which is still underinvestigated,” El Aidy wrote.
She also pointed out that many Parkinson’s patients are on proton pump inhibitors (PPIs), which are used to treat their gastrointestinal problems.
She noted that PPIs can cause bacterial overgrowth in a person’s upper intestinal tract.
Enterococcus — the bacteria whose enzymes proved to be so disruptive in this study — is one of the dominant bacteria in this part of the body.
El Aidy urged people with Parkinson’s to “be cautious when taking PPIs” as they may be interfering with the effectiveness of their medication.
“These bacteria, or more specifically their harbored enzyme that breaks down levodopa, is not inhibited by any of the conventional inhibitors of the equivalent human enzymes,” she wrote.