We kick off the new series of the award-winning Parkinson’s Life podcast with a conversation about sleep and Parkinson’s. Brian Magennis, a Parkinson’s advanced nurse practitioner, talks with married couple Cormac and Mary Mehigan about how their sleep has been affected by the condition – from insomnia to vivid dreams – and how people with Parkinson’s can get a good night’s sleep
“When Cormac was diagnosed, I thought that Parkinson’s was all about motor symptoms and a tremor and a shake. I never realised that there were these non-motor symptoms. What we’ve found is that Cormac’s movement isn’t too bad – but he’s had enormous issues with sleep.”
Mary Mehigan is talking about her husband Cormac’s Parkinson’s disease. The couple, who live in Limerick, Ireland and have been married for nearly 25 years, have been affected by Cormac’s sleep disturbance since he began experiencing Parkinson’s symptoms around six years ago. He was finally diagnosed with the disease in 2018.
They share their experiences in the first episode of the new series of the Parkinson’s Life podcast – which brings together people impacted by the condition for a candid and often emotional discussion. The episode is part of a new campaign, Sleep Well, by the European Parkinson’s Disease Association (EPDA).
Up to 90% of people living with Parkinson’s suffer from sleep problems, which can include insomnia, problems moving in bed and urinary issues, as well as hallucinations, nightmares and vivid dreams.
Cormac, a consultant in emergency medicine, sometimes physically acts out his dreams – leading to broken nights of sleep for his wife Mary. Kicking his lamp off the bedside table is a regular occurrence, he says.
Cormac and Mary Mehigan.
Recalling one of his earliest experiences of a vivid dream, in which he thought he was being chased by skeletons on a sleeper train, he says, “I turned around (to this skeleton) and hit him as hard as I possibly could across the face, and then woke up to [Mary] screaming beside me.”
Mary, a teacher, says she rarely gets a full night’s sleep and has struggled with tiredness at work. “It got so that I learned where to sleep in the bed, where to position myself and I could sense when he was about to kick off,” she says.
“It’s a big surprise. I thought all these Parkinson’s issues were Cormac’s issues and sleep was Cormac’s issue. But actually, it’s a shared issue for us.” She now keeps a sleep diary to track her sleeping pattern and how to improve it.
Getting a good night’s sleep
They are joined in conversation by Brian Magennis, a Parkinson’s advanced nurse practitioner from Dublin, Ireland, who is one of only four specialist Parkinson’s nurses in the whole of Ireland.
He has a close personal connection to the condition: his father was diagnosed with the condition when Brian was just 18 months old. “I don’t know my dad any other way except having Parkinson’s,” he says. “He’s been so positive and lived really well with it.”
Vivid dreaming, or REM sleep behaviour disorder, says Brian, can sometimes predate the motor symptoms of Parkinson’s. “There often seem to be dreams of people being in a fight or being chased – and it can be quite violent,” he says. “When we assess people in the clinic, we have a whole list of the non-motor symptoms that we go through – and the same with the motor symptoms. And the non-motor symptoms are the ones that really affect the quality of life.”
“It is very difficult,” he continues. “What usually ends up [happening] is that the partner moves out into a separate bed or a separate room. And that’s not good for the relationship.”
All guests agree that quality of sleep has a huge influence on other symptoms of Parkinson’s. “When people have a good night’s sleep,” says Brian, “they’re actually much better from a motor point of view.”
“I would agree 100%,” Cormac adds. “The day after a good night’s sleep, I’m buzzing. It makes such a difference.”
Take part in Parkinson’s Sleep Well Week
If you have Parkinson’s disease and find it difficult to sleep, you’re not alone. Up to 90% of people with the condition are similarly affected.
Identifying the root causes of sleep problems is the first step to solving the issue. Disrupted sleep can be due to a number of factors such as poor sleep hygiene, Parkinson’s symptoms or Parkinson’s medications.
From 24–30 May take part in the EPDA’s ‘Parkinson’s Sleep Well Week’, part of the EPDA’s month-long ‘Sleep Well’ campaign, and join other people with Parkinson’s to share sleep tips and ideas. For more resources to improve your sleep habits and help you sleep well, please visit the EPDA website.
Tips for sleeping well with Parkinson’s
Parkinson’s advanced nurse practitioner Brian Magennis shares six ways to improve your sleep.
1. Take your day as a 24-hour cycle
“That includes timing your meals so that you don’t eat a heavy meal two hours before going to bed, or even four hours before going to bed – and have a structure in the routine.”
2. Cut out caffeine
“Avoid the high caffeine drinks, teas and coffees after seven or eight o’clock. If you’re prone to getting up and going to the loo several times at night, avoid drinks after seven o’clock as well.
3. Exercise more
“During the day, get yourself tired. Exercise. Do something and avoid those naps. The busier you are during the daytime without napping, the more tired you will feel going to bed.”
4. Switch off electronics
“Avoid having a TV in the room because you’re just going to end up watching TV and staying up late. The bed is for sleeping.
5. Get comfortable
“You can’t beat a good comfortable pillow and a good comfortable mattress. One that’s not too soft or too hard.”
6. Take a siesta
“You should be napping really in the early afternoon. A siesta is really good. The brain gets refreshed and the batteries get recharged. And it’s really good for people who have sleep trouble.”
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Regular exercise may slow progression of early Parkinson’s disease symptoms
A research team in Japan has suggested that around four hours of weekly moderate exercise is associated with a better clinical course of early-stage Parkinson’s. Their study, published in ‘Neurology’, drew on data from 237 people with the condition, whose symptoms were monitored over a period of up to six years. The research showed that people who were regularly active for at least one to two hours, one or two days a week, were better able to maintain daily activities than those who exercised less – and even experienced a “slower deterioration of processing speed”. The researchers highlighted that these benefits stemmed from maintaining regular exercise over time, rather than levels of activity at the onset of the condition. They added that their findings “suggest it may never be too late for someone with Parkinson’s to start an exercise programme”.
Could traumatic brain injury accelerate the onset of Parkinson’s disease?
Undergoing a traumatic brain injury (TBI) – a sudden injury that damages the brain – may be linked to Parkinson’s onset at an earlier age, new research suggests. The study, led by researchers in the US, examined data from the National Alzheimer’s Coordinating Centre (NACC) database and assessed whether TBI was associated with age of disease onset, survival and the degeneration of dopamine-producing nerve cells in the brain. They found that while there was no significant association with age of death or greater impact on dopamine-producing nerve cells, results showed that TBI was linked to a 4.9-year earlier age of Parkinson’s onset. Reflecting on the results, the researchers wrote that traumatic brain injury “appears to accelerate Parkinson’s onset without altering age of death”. However, the researchers also cautioned that “the nature of this relationship remains unclear”.
NASA astronaut who lived with Parkinson’s disease has died
“When I got diagnosed with Parkinson’s I thought it was over,” US astronaut Michael “Rich” Clifford once said, in a webcast conversation with Parkinson’s expert Dr Ray Dorsey. But when US space agency NASA offered him another opportunity to board a space shuttle, despite the onset of Parkinson’s symptoms, he didn’t hesitate. “And it was as easy as that.” Now, nearly 30 years since his final venture into space, Clifford has died due to complications from Parkinson’s disease. He leaves a legacy of three journeys into space, several awards for his services to the space programme – including the NASA Space Flight Medal – and a history of advocacy for people with Parkinson’s. In a 2013 conversation with the Michael J Fox Foundation, Clifford said: “Everyone with Parkinson’s handles it differently. Don’t let it get in the way of living. “Life is too good. Keep going. The sky’s the limit.” Image credit:…