How can people with Parkinson’s disease recognise and anticipate ‘off’ periods?

Neurologist Dr Andrea Pilotto and Dr Maria de Leon, a movement disorder specialist living with Parkinson’s, talk about how to anticipate ‘off’ periods – and why having “a good rapport with your doctor is key”

“All at once, your body just stops working, and you struggle to speak or swallow. You’re frozen.”

This is what a sudden ‘off’ period feels like to Dr Maria de Leon, a US-based movement disorder specialist who has been living with Parkinson’s for 16 years.

‘Off’ periods can be a common experience for people with the condition. These moments occur when medication is not as effective as it should be, and it becomes more difficult to manage symptoms. They can take a number of different forms – from wearing ‘off’ slowly to partial or complete medication failure.

The impact of ‘off’ periods on symptoms varies from person to person, says Dr Andrea Pilotto, a neurologist from Italy whose research focuses on people with neurodegenerative conditions. “Every person with Parkinson’s is quite different,” he explains.

Can you recognise an oncoming ‘off’ period?

The unique experiences of those with the condition can make it challenging for individuals to anticipate when an ‘off’ period might happen – but there may be some recognisable patterns, according to Andrea.

“These periods tend to start around one or two years after people start taking levodopa,” he says. He adds that periods of stress and struggles with mental health can also be potential factors that impact the onset of ‘off’ periods.

For Maria, the frequency of ‘off’ periods has changed throughout her diagnosis. “When I first started taking levodopa after my diagnosis, one dose would last me 48 hours,” she says. “But before I started new treatments, my medication would start wearing off after only four hours. Now, I wake up in the morning really stiff – not able to get out of bed or get dressed until I take my medication.”

Maria explains that she can recognise certain warning signs of an oncoming ‘off’ period: “The first thing that always gets affected is my cognition. If I’m not really ‘on’, I start getting irritable when people ask me to multitask because it’s hard for me to process information.” She points to swallowing problems and difficulties with stiffness as additional flags.

However, ‘off’ states cannot always be predicted. Among the different types are unpredictable ‘off’ periods – which arise suddenly and without warning. For Maria, these states became more common as her condition progressed: “It used to be more of a gradual onset, but around a year ago it started becoming more sudden and more severe. I was really struggling.”

However, as both experts outline, there are tactics that may help people with Parkinson’s to keep ‘off’ periods at bay – and maintain a good quality of life.

“Awareness around different phases of ‘on’ and ‘off’ periods is important”

When it comes to extending ‘on’ periods – the times during which medication is effective – both Andrea and Maria encourage people to try different treatment combinations to see what works best for them. “I’ve been on a mixture of medications since the beginning,” says Maria. “I always tell my own patients, ‘Make sure you work with different combinations.’”

But they also recommend looking beyond medication. “It’s important to engage in physical and mental activity,” says Andrea. Maria agrees, saying: “I think it’s essential to try and learn new things – to interact with others and to engage in as much exercise as possible.”

Maria stresses the importance of mental and physical activity.

Both experts also highlight that journaling the occurrence of ‘off’ periods is vital to recognising the warning signs – and developing a treatment plan. “Electronic and paper diaries help people realise the important symptoms that come up,” Andrea explains. “Awareness around different phases of ‘on’ and ‘off’ periods is important – but it is something that is still underestimated by a lot of clinicians.”

“Write down and record everything,” Maria adds. “Answer questions like: What time do you take your medicine? How long does it last? What symptoms improve? Does your medication suddenly stop working, or is it gradual? How often does this happen?”

These notes will help to provide doctors with a clearer overview of one’s symptoms and ‘off’ periods, she says – and, in turn, enable the person with Parkinson’s to take control of their condition.

“Having a good rapport with your doctor is key”

In fact, both Maria and Andrea emphasise that maintaining open communication with healthcare providers is vital.

Alongside her combined treatment approaches, Maria credits a close relationship with her doctor for helping her to manage the condition and understand how ‘off’ periods impact her. “Having a good rapport with your doctor is key. I’ve been very lucky because my physician is also a colleague and a friend; I’ve had other doctors who just tried to give me a lot of medicine without knowing anything about me,” she says.

“It’s like any relationship – you have to establish rules and guidelines. It’s that mutual respect and communication,” she continues. “What you need is somebody that can look at you not just from a medical perspective but also from your personal situation.”

“Most people don’t know that ‘off’ periods are related to therapy,” adds Andrea. “If they do, they can understand and recognise their ‘on’ and ‘off’ states – and work with their healthcare providers to find the best strategy for them.”

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