“The reality of OFF periods is they suck!” says Gary Boyle, a Parkinson’s Europe Board member, who was diagnosed with Parkinson’s in 2011.
An OFF period is what happens when a person’s Parkinson’s medication wears off.
“It’s both a motor and a non-motor phenomenon, so whatever their motor profile is and whatever their non-motor profile is they can get a worsening of those symptoms,” says Brian Magennis, Advanced Nurse Practitioner at Mater Hospital in Dublin, and Parkinson’s Europe Board member. “And then in the midst of that as they’re switching off, they can get non-motor symptoms like numbness, tingling, a peculiar feeling in the tummy, [they can feel] agitated, irritable, cranky, [get] pins and needles – all sorts of weird and wonderful symptoms – and then as soon as their next dose kicks in, these go.”
Generally speaking, OFF periods will start to occur once a person has had Parkinson’s for ten years or so. Just as every person with Parkinson’s will experience the condition differently, the characteristics of their OFF periods will vary too.
Gary explains what his OFF periods are like. “I start to tremor in my hand and my arm. I go really slow. I can’t really write. I find it hard to operate my phone. I feel down, I feel nervous. I start wondering, ‘When am I going to be back ON again?’ Being OFF impacts pretty much everything.”
Although the terms ‘ON’ and ‘OFF’ suggest a stark decline, going OFF can be more of a gradual deterioration.
Factors including environment and lifestyle – diet, nutrition, exercise and sleep – and the time of day all have an impact on a person’s OFF state. OFF periods can also occur at night as well as during the day. And they can also happen suddenly – apparently for no reason.
“Sudden OFF periods are rare enough but when they happen it’s really debilitating,” says Gary. “I’ve never been OFF for more than four hours – that’s the worst case – but that happens nearly every six months and it happens when you least expect it.”
If you are suddenly – over a few days or weeks – experiencing more OFF periods than is normal for you, there is likely to be a reason, says Brian. This situation is usually a temporary setback and does not necessarily mean that your Parkinson’s is progressing. But it is important to consult a healthcare professional who can help identify the cause.
In most cases, a sudden increase in OFF periods is due to one of 10 reasons, says Brian:
- You are constipated. This can affect the absorption of Parkinson’s medication and make it less effective.
- You are unwell (for instance, with a urinary or chest infection or influenza), or recovering from surgery. These stress the body, which can cause a temporary worsening of symptoms.
- You are going through a stressful period.
- You are dehydrated. This can reduce blood volume and affect medication absorption.
- You are not taking your medication at the correct times, or your medication regime has changed.
- You are taking a contra-indicated medication for a non-Parkinson’s health issue, and it is making your Parkinson’s medication less effective.
- You are depressed. This can cause a sudden worsening of both motor and non-motor symptoms.
- You are suffering from acute or chronic pain.
- You are experiencing anxiety or having panic attacks. This can result in an increase in motor symptoms. Anxiety is also a common symptom of a levodopa dose wearing off.
- You are not sleeping well. An extensive period of poor sleep can – temporarily – impair motor function.
“Constipation is a big one because it blocks the absorption of levodopa,” Brian says. “If you’re sick from an infection or any surgical procedure, you might be more OFF, because you may have been on some medications that are contra-indicated. Stress is a big thing that can really induce an OFF period.
“Once you identify the cause, treat the cause, allow a bit of time, they’ll get back to that baseline that they were at. Unless it’s medication-related,” he says.
He advises that people with Parkinson’s keep a diary of their OFF periods, recording how long it takes for their medicines to work and how long they last to show to their healthcare provider. People with the condition should avoid having a situation where, say, they are spending a total of eight hours a day in an OFF state.
Lastly, Brian advises that people with Parkinson’s work with the pattern of their OFF periods.
“Some people are really good in the morning and as the day goes on, they wear OFF and are more OFF and dyskinetic in the evening and that’s their pattern. Other people are really bad in the morning and as the day goes on and into the evening, they’re much better. So, tailor your day and your lifestyle if you know there’s a pattern.”
If OFF periods are becoming problematic, he says: “Go to your healthcare professional to help you manage things better. We can identify very quickly what’s going on.”
Parkinson’s Europe is sharing this article for information purposes only; it does not represent Parkinson’s Europe’s views and is not an endorsement by Parkinson’s Europe of any particular treatments, therapies or products.
