Ask the expert: How does Parkinson’s disease impact dreams?
Dr Daniele Urso shares insights and advice on sleep disturbanceREAD MORE
Our readers from around the world share how their holiday celebrations have changed in the face of Covid-19 – and offer practical tips for people living with Parkinson’s disease to take care of their wellbeing this winter
Normally the holiday season is a time for celebrating our close-knit clan surrounded by those that matter most. This of course has been superseded by the global pandemic. Understandably so – we all must sacrifice cherished time for a chance to come together in the future.
So take the reprieve from the holiday bustle and parties to focus on what is most important to you. Take the quiet days to develop a routine for extreme self-care. Develop an at-home exercise routine incorporating the vast number of online classes. Take time to think about and write down your quality-of-life goals, then research how you might be able to achieve those goals.
Also remember to not isolate yourself, particularly if you have any mood issues which are very common in Parkinson’s disease. Loneliness in and of itself can be extremely stressful, which can lead to difficulty coping. Try new ways of engaging and connecting – online support groups, video conferencing with family and friends.
Adaptability is key when dealing with this progressive neurodegenerative illness. This flexibility is even more vital during these extraordinary times to maintain our quality of life.
My holiday traditions have always been messy. I live in Belgium with my partner and two children but I’m originally from the Netherlands. Geographically we are not very far away – but we have to take into account the Covid-19 restrictions from two countries. It looks like I can’t meet my parents face-to-face this year. We decided to postpone holidays until we can meet again. I’ll keep the lights on!
Until then, we have messy video calls with kids around, taking over the conversation and the camera. Besides socialising, exercising and preparing lots of veggies is what keeps me going. It sounds like I have it all together, but the reality is that I should invest much more time in daily exercise. I noticed that during the second lockdown in Belgium I hardly saw anyone, mostly due to the cold and rainy weather. But we have to continue checking on each other – call, ring doorbells and have a chat in the doorway respecting distance rules. And exercise more!
I follow the Ethiopian Orthodox Church, and before being diagnosed with Parkinson’s I used to go to church early in the morning. During the holidays, churches would be flooded with people.
For Ethiopians, social gathering is the most important part of the holidays. We usually prepare food and beverages abundantly to serve our family and visitors. This changed drastically after coronavirus – even my family stopped going to church. Parkinson’s restricted me from visiting friends and the pandemic restricted the movement of my regular visitors. With loneliness, life becomes unbearable.
To my fellow Parkinson’s patients: since we are more vulnerable to the impact of coronavirus, we must practise what health officials tell us. And don’t forget to exercise.
Good tidings we bring, to you and your kin, so the song goes. Let’s hope there are some good tidings – we desperately need some. I blame the Irish and their rich heritage of storytelling and music making. My dad was from the wild west of Ireland with its old Gaelic modes – beautiful timeless music – which had a profound effect on me as a musician and composer.
Music for every occasion, there certainly was, especially at Christmas and New Year. Taking piano lessons qualified me to accompany some of these family gatherings. I had to learn quickly but I loved it. There’s a song on my last album called ‘Mom Loved the Sunshine’ which is all about this tradition. I loved the music, but I had little knowledge then that it would become my lifeline to this world at my darkest moments battling Parkinson’s. It must love me back, as it often rescues me.
When my siblings and I split the nest, meeting at mum and dad’s for Christmas lunch became legendary, with some moments elected to enter the ‘Christmas Day Sing-Along Hall of Fame’. This year we will be singing:
We wish you a happy Zooming,
or FaceTime or Google Grouping.
We wish you a happy holiday and tidings of Joy.
Our Christmas tradition usually involves getting together with family in a big celebration that includes lots of cooking, chatting and laughing. We usually make tamales while we listen to Christmas songs and stay up all night playing games and watching movies.
This year there will be no bouncing around in the kitchen – bumping into one another as we make tamales – or talking over one another or playing games. But my husband, daughter and I will still be thankful for the season and celebrate the most wonderful time of the year, making cookies and enjoying each other’s company.
There will be no going to a Christmas Eve service after dinner, as is our tradition, but we will find a way to celebrate the birth of our Lord via online services and sing our own Christmas tunes while my daughter plays the piano. We will still stay up all night by the fire, watching our favourite holiday movies, eating popcorn and chocolate covered raisins. We will find a way to video call our loved ones during dinner or play games together online. We might even have a sing-along.
The main thing is to preserve the spirit of the season by reaching out to friends and loved ones near and far – sending them love, reminding them to stay safe, encouraging them to share food, treats, stories and even a virtual hug with those in proximity to us.
Every year we have one big family Chanukah party. After we light the menorah and sing all the traditional Chanukah songs, we enjoy potato latkes topped with apple sauce and cheese. The children put on some type of show, my husband and I distribute Chanukah – usually small gifts – to each of the grandchildren, and we eat lots of latkes and donuts. This year that will be impossible. Instead, weather permitting, we plan to meet at a park one morning.
Tips for staying healthy: stick to your schedule as much as possible and make exercise your top priority. I personally exercise over Zoom with Jerusalem’s Tikvah for Parkinson Wellness Program. I love being part of a group while remaining in the comfort of my own home. Find a group that will keep you motivated, and then make a point of scheduling the classes into your personal calendar.
Family, friends and the true meaning of Christmas are very important to us. Our involvement in the Christmas Eve crib service – which brings together our community inside the beautiful village church with candles and nativity costumes – usually marks the beginning of the main festivities. A walk down the narrow lane from church, lit with fairy lights, leads to a party where village friends gather to celebrate the festivities.
This year brings a new challenge. We are creating a socially distanced experience in the churchyard that depicts the Christmas story in music, lighting and drama. It’s so lovely to see the community pull together to seek a Covid-safe alternative. Let’s hope it’s a dry evening!
We know that exercise is important and even more so for those of us with Parkinson’s, and so keeping up that routine during the festivities is very important. A little planning helps to avoid those last-minute stresses that can upset our symptoms so much, and with all the excitement we mustn’t forget to take our meds on time. Time spent with loved ones should be treasured as we find pleasure in sharing a meal, playing games, listening to music, and giving and receiving gifts. Above all we should keep Covid-safe by washing our hands regularly and staying within our support networks.
My holiday tradition is to cook turkey with my mother on Christmas Day. Afterwards, we have a large family gathering. Due to the pandemic, this holiday season will be somewhat different, because there will be no party this year. In the province of Quebec, Canada, gatherings are forbidden to limit the spread of Covid-19. As a person with Parkinson’s, I respect and follow all safety measures.
For people living alone, we are allowed to have one visitor only. Since my mother also lives alone, we will both prepare the Christmas dinner: turkey, dressing and deliver it to our family in a way that does not involve contact.
I encourage people with Parkinson’s to stay active during the holidays. Exercise is very important for the management of the condition and has a positive impact on wellbeing. There is a variety of exercises classes online – yoga, tai chi, dance, boxing and more. Walking is another great option.
I would advise anyone with Parkinson’s to wear your mask and stay within the social bubble you have created. Eat well, sleep well, be well. But most of all, if you’re feeling lonely or having difficulty, you can always contact me via my website and I will call you back. Don’t be alone this Christmas.
When I was a boy my parents used to hold impromptu drinks parties, to celebrate the holiday spirit on Christmas day with the local neighbourhood. I’ve always tried to continue this tradition, but this year because of the pandemic it will be a very small affair. My sons live away from my home, in Wales and the south of France. So this year will be full of Zoom and FaceTime calls to friends and family. As impersonal as it is, the distance doesn’t lessen the love that I have for them in my heart – and that’s truly the meaning of Christmas to me.
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