Jo lives on the North East coast with her husband, her two daughters and her dog. Here she shares her tips on sleep, yoga and living life to the full with Parkinson’s.
Jo recalls a vivid memory from a recent skiing trip with her husband and friends.
“We got to the top of the ski slope and I was so tired that I couldn’t go any further. My husband was pointing to a lovely cafe about 100 metres in front of us but I just had to lie down. People were stepping over me to get past.
“Some people think fatigue is just feeling a bit sleepy, but it’s so much more than that, especially in Parkinson’s. For me, it’s an overwhelming, compelling tiredness that I can’t control.”
Fatigue was one of the first signs of Parkinson’s that Jo experienced. Initially, she put this down to anemia, something Jo had experienced during her first pregnancy. She went back to the GP a number of times to try and figure out what the cause of her extreme tiredness could be. She was also experiencing a tremor in her left hand, stiffness down her left side and her handwriting was getting smaller, but she didn’t join the dots.
“I had worked in healthcare as a cardiac nurse and as a principal lecturer teaching others, but I didn’t know much about Parkinson’s. To be honest I thought it was something that was only common in older men. I was diagnosed when I was 47, so the idea of it being Parkinson’s just wasn’t on my radar.”
My advice is to say no to caffeine after midday, have a notebook by the bed to write down things that might otherwise keep you awake, and get up for a hot drink in the night to reset, if you need it.
Tips for sleeping well at night
As well as daytime sleepiness, Jo sometimes struggles to sleep well at night too. It’s not always possible to know whether it’s her Parkinson’s or her menopause that is contributing to her sleep issues, but she uses a number of tips to ease things.
“For people who can’t sleep, my advice is to say no to caffeine after midday, have a notebook by the bed to write down things that might otherwise keep you awake, and get up for a hot drink in the night to reset, if you need it.”
Jo has also found the app ‘Calm’ really useful. “You can set it to read out stories or facts in a relaxing way, which helps me drift off,” she explains. “I listen to Stephen Fry and it really helps me nod off. I definitely recommend it.”
The benefits of being online
In fact technology and being online is something that Jo has really embraced since diagnosis, because she finds that it’s a great way to connect with others of a similar age. And after meeting a social media influencer at a music festival, she was inspired to set up an Instagram account to share her story.
Her fatigue was one of the first things Jo decided to mention, posting comparative photos of her looking well, and then tired, to show that no two days with Parkinson’s are the same.
“The reaction I got was great because I was dispelling myths about Parkinson’s. I felt pretty isolated after diagnosis, but being on Instagram and sharing my symptoms has helped me open up and connect with other people.”
My advice is to go for it. Whether it’s yoga, boxing or reiki, there is something for everyone. Just try different things and see what works for you.
Jo also shares images of herself doing yoga and breathing exercises, something else that helps her stay calm, energised and sleep better. If she is in a stressful situation or feels like she is having a bad day because of her condition, she uses the breathing techniques she’s learnt to to help overcome the problem.
“I’d never done yoga before I had Parkinson’s,” Jo explains. “But one Sunday, my friend told me about a spare space she had on a yoga retreat. So I booked it and was off the next day! I couldn’t do a lot of the postures at first because of my stiffness, but the breathing exercises and techniques I learnt have been a lifesaver to be honest.
“My advice is to go for it. Whether it’s yoga, boxing or reiki, there is something for everyone. Just try different things and see what works for you.”
Doing things in moderation
But she is mindful of not doing too much. Sometimes this means taking things at her own pace, when people around her may be packing things in. For example, on the final day of a recent holiday, Jo decided to relax in the hotel, so that travelling later that day wouldn’t tire her out.
“After years of working in critical care, I’ve always been mindful to do things and live in the moment. By 28 I’d completed my bucket list – I’d travelled, jumped out of airplanes, all that type of stuff. And since my diagnosis of Parkinson’s, I’ve tried to keep the same attitude. My mottos are ‘carpe diem’ (seize the day), ‘year of yes’ and ‘yes you can!’.”
She adds: “I know I’m not usually someone who does things in moderation, but I am learning to factor rest into my day. I’ll rest for a bit, or if I wake up early, I'll take the dog for a walk on the beach by my house to watch the sunrise. Those little moments keep me going.”
Looking for more information about sleep issues in Parkinson’s and how to manage them? Read our health information and download our guide.