Sleep and Parkinson’s: tips from David, Scottish Trustee

David lived abroad and travelled around the world before he was diagnosed with Parkinson’s. These days he is a Parkinson’s UK Trustee and lives at home in Scotland. Here, David talks about how he tackles his problems with sleep.

“I had worked in Asia and the Middle East for 28 years and was living in Dubai at the time I was diagnosed,” explains David. “I had a busy job travelling around Asia as regional managing director of a multinational PR firm, but it was becoming more difficult to manage because of the body seizures and other symptoms I was experiencing.

“In Dubai you can’t be ill and work, so I was fired on the spot – just like that. As someone who loves the challenge of work, the shock for me wasn’t being diagnosed, it was losing my job.”

After diagnosis, David decided to move back home to Scotland with his husband and kept himself busy by volunteering for Parkinson’s UK. He set up a Parkinson’s cafe, started a Parkinson’s singing class and became part of the Younger Persons Alliance (a Parkinson’s UK group for people diagnosed at a younger age). He is now also chair of the new Scotland Advisory group, which aims to help Parkinson’s UK do even more for people affected by Parkinson’s in Scotland.

If I go to bed at 10, I’ll be wide awake by 1am. Then if I’m lucky I’ll get another half an hour at 6. So at most I’m sleeping 2 or 3 hours a night.

Managing sleep issues 

The main symptoms he experiences these days are falls and stiffness, which he manages with a walking stick, and problems with sleep. Many people with Parkinson’s experience sleep problems but David struggles to find much that helps. 

“Reading, milky drinks, watching TV - you name it I’ve tried it,” he explains. “None of it does much good. If I’m lucky, exercise can help. I walk the dog twice a day, which knackers him out, as well as myself.”

He adds: “I never have problems falling asleep but I do have problems staying asleep. If I go to bed at 10, I’ll be wide awake by 1am. Then if I’m lucky I’ll get another half an hour at 6. So at most I’m sleeping 2 or 3 hours a night.”

David used to get stressed and worry about the fact he wasn’t sleeping well at night, but these days he naps mid-morning to keep him going throughout the day and to recharge his batteries. 

He also makes sure he isn’t exposed to blue light from technology and that he always sticks to his medication regime.

“Mobile phones, tablets and laptops emit blue light which disrupts your melatonin levels,” he says. “There are many apps that you can download to help with this. I use one called ‘f.lux’ which lessens the effect. It’s really useful for keeping my energy up.

Getting Parkinson’s medication on time

“I also make sure that I get my medication absolutely on time. If not, I get an off period which affects how tired I get and can make it harder for me to move around.”

An off period happens when medication for Parkinson’s wears off before the next dose is due. For people with Parkinson’s, it can be important that those around them know about this medication side effect so that they can help.

My husband always laughs at me because it’s the days when I’m having an off period or when I’m not as mobile that I’ll do more. I’ll clean the car, wash the dishes and walk the dog. But that’s who I am. I’m not going to let Parkinson’s win – I don’t want that.

David explains that busy cities like London can be tricky when he’s ‘off’ because they are so full of people, but living with his husband and dog in Scotland makes things a little easier.

He says: “My husband always laughs at me because it’s the days when I’m having an off period or when I’m not as mobile that I’ll do more. I’ll clean the car, wash the dishes and walk the dog. But that’s who I am. I’m not going to let Parkinson’s win – I don’t want that.

“My dog Angus provides great company too. Being a golden labrador he is very intelligent. When he is with me he’s really gentle. He definitely knows when I’m having an off period, or I’m tired. He’ll take his time and won’t go so far ahead.”

Becoming a Scottish Trustee for Parkinson’s UK

Most recently, David has busied himself by becoming the Scottish Trustee for Parkinson’s UK. This means helping to govern the charity and set the upcoming strategy and priorities for Parkinson’s UK. He says that research and supporting people with Parkinson’s will always be an important focus for the charity. But there is one key change.

“Traditionally, Parkinson’s UK has provided so many activities for people with Parkinson’s from singing groups, to exercise classes. Now the focus is on putting these things into the hands of people affected by Parkinson’s so that they can lead on stuff that will help them. It’s very empowering and exciting for the future of the charity.”

Looking for more tips on sleeping well with Parkinson’s? Find out more.