“Life isn’t easy”: how coronavirus is affecting women with Parkinson’s
Women and Parkinson's
Author: Sophie BatesPublished: 21 May 2020
Prep: Cook: Serves:
From home-schooling children to dealing with loneliness, four women with Parkinson’s share how the coronavirus pandemic is impacting their everyday lives
We asked four women living with Parkinson’s to share their experience of Covid-19 so far. From feeling the pressure to ‘do it all’ by juggling work and caring for children, to fearing for their health and keeping up with daily life – they consider whether women with the condition are being disproportionately affected by the pandemic.
Emma Kyriacou, New Zealand: “Once I accepted that I can’t do everything, the pressures eased”
Initially I found dealing with lockdown very stressful because I couldn’t see how I was going to do all the things I suddenly had to do – be a teacher to my children, play with my pre-schooler and continue to work, on top of all the usual tasks of running a household. These pressures left me dealing with a growing storm of inner rage, while it seemed business as usual for my husband.
It got easier after confessing these feelings, as we worked out a way to share responsibilities so that I had more time for work and my husband could spend more time looking after the children and doing housework. Once I accepted that I can’t do everything, the pressures eased.
Being stuck at home has its advantages. Although they drive me nuts, I am loving being around my family, especially spending more time with my husband. I love that we don’t have to rush around like crazy in the morning – trying to get kids to school on time, as well as staying reasonably sane and organised. It’s great to not have to go anywhere, and I really feel like I have everything I need.
Life isn’t easy. And having a chronic illness increases the degree of difficulty somewhat. Put a pandemic on top? It definitely takes an adjustment period! How people experience Parkinson’s and how they cope with it is so variable that I don’t think it’s possible to make wide sweeping statements that generalise about what things are like for the community. Just as Parkinson’s is variable, so is the impact of Covid-19 on your life, and how well you’re able to cope with it.
Being able to digitally interact helps and I’ve found connecting online with the Parkinson’s community has been extremely comforting for me. For those who can, I recommend finding others that you can talk to, bounce ideas off and have a laugh with.
Allison Toepperwein, US: “I feel so blessed to be able to work from home”
To me, the pandemic hasn’t affected me more due to Parkinson’s or because I’m a woman. I feel so blessed to be able to work from home and don’t feel I’m suffering more than anyone else, rather I’m more blessed than the average person.
My daughter’s birthday took place in lockdown, on 2 April, and this day has many meanings for me. It was the day my beautiful daughter was born, but it’s also Parkinson’s Awareness Month, and around the time that I experienced my first tremor.
As a mother, warrior of life, and one to never fall prey to the role of victim, I did what came naturally. I decorated from the top of the doorway, to the foot of the staircase, and all around the kitchen table. My daughter knew she was special that day! I showered her with presents and made a birthday cake to celebrate her decade. Then, after a month of isolation, I surprised her with her friends virtually in a Zoom birthday party. It was a great day!
Kitty Fitton, New Zealand: “I’m strong, I’m tough, I’ll be just fine. But sometimes I’m not”
One of the hardest things about lockdown has been ensuring my children get everything they need. Keeping them happy, safe and secure has often fallen at my door, as “I don’t have anything to do”. You reckon? You should see my to-do list. But nobody else is going to do it. I’ve been a mother, carer, counsellor, sports coach, teacher, musician, cleaner, gardener, IT whizz, cook and special events coordinator. Let’s not discuss hygiene and the subject of two boys. That takes special powers. Oh – and the part-time job. But it’s only part-time right? It’s not really that important.
I don’t want sympathy or tucking away in a chair wrapped in a shawl for my Parkinson’s, but I do find some things hard. It’s tougher to get going in the morning, and I worry about going to the supermarket.
I’m strong, I’m tough, I’ll be just fine. But sometimes I’m not. I’m human and sometimes I want to scream and kick because I’m scared too. The modern take on ‘having it all’ means ‘doing it all’ and if we complain we’re told we’re being too demanding. But we go on. Because we are strong. And we don’t have a choice.
As we say in NZ, Kia kaha, kia maia, kia manawanui: be strong, be brave, be steadfast.
Sharon Krischer, US: “Without structure, the days all blend together”
Do I feel that the pandemic has been different for me because I am a woman? Maybe. I miss being with other people, I miss my manicures, haircuts, going to the gym, shopping, and all of the things that I do with my friends and family. Without structure, the days all blend together.
One of the first things I noticed from being at home was that the lack of a daily routine caused disruption to my exercise routine, which had a greater effect on me than anything else. I soon noticed my symptoms worsening and that I wasn’t sleeping well. As the weeks went on, my exercise classes came online through Zoom and eventually I was exercising more than before. One of the great things about the pandemic has been reading to our grandchildren and playing games with them through video – it’s helped us a lot.
The one thing missing for a lot of women with Parkinson’s is the ability to reach out to one another, so I decided to take the support group I was already running online. ‘Sunday Mornings with Twitchy Women’ is a meeting for women to come and join to chat and support one another. It’s not the same as getting together physically, but it goes a long way to making us feel better.
Need to know
Kitty Fittonis originally from Leeds, UK, and was diagnosed with Parkinson’s in 2015 at the age of 41. She now lives in New Zealand with her husband and four children. She runs a small business that offers digital marketing and website design – alongside public speaking about Parkinson’s, stand-up comedy and a little MC-ing. For more information on Kitty Fitton visit her website kittyfitton.com.
Allison Toepperweinis a campaigner, blogger and two-time ‘American Ninja Warrior’ contestant, and was diagnosed with Parkinson’s in 2014. She lives in the US with her 10-year-old daughter Emma. Read Allison’s blog here.
Emma Kyriacou works at the Ministry of Education in New Zealand. She was diagnosed with Parkinson’s two years ago, aged 40. She lives in New Zealand with her husband and children. Read Emma’s blog here.
Sharon Krischeris a blogger based in Los Angeles, US, who was diagnosed with Parkinson’s in 2009, at the age of 57. Find out more about Sharon and ‘Sunday Mornings with Twitchy Women’ here.
Women and Parkinson’s: Our campaign
It is estimated that three million women worldwide are living with Parkinson’s – yet their specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. Our campaign shares the little-heard stories of women with the condition to find out how their lives are being affected by a shocking data gap when it comes to women and Parkinson’s. This is just the start.
We want to raise awareness of women’s experience of the condition within the medical profession, so that women’s symptoms are taken seriously.
We think more research is needed into the impact of Parkinson’s on women, so that they can benefit from tailored medication and treatment.
We want to explore ways to offer better support for those women managing the condition alongside caring responsibilities.
Join us – #WomenAndParkinsons.
For more information on women and Parkinson’s please visit the EPDA website.
How creativity and Parkinson’s can work hand-in-hand
3 days ago
Diesel exhaust fumes may increase the risk of Parkinson’s, study suggests
A new study by researchers in the US has found evidence that chemicals in diesel exhaust fumes can damage brain cells – and potentially increase the risk of Parkinson’s. As part of the study – published in ‘Toxicological Sciences’ – researchers tested the effects of diesel exhaust fumes on zebrafish, as their neurons interact in a similar way to those of humans. The researchers found that after being exposed to the chemicals, the zebrafish had fewer cells that dispose of toxic build-up of the protein alpha-synuclein, which occurs in Parkinson’s. The researchers replicated the experiment with cultured human cells and found similar results. Dr Jeff Bronstein, a professor of neurology at the University of California, Los Angeles (UCLA), US, said: “Overall, this report shows a plausible mechanism of why air pollution may increase the risk of Parkinson’s disease.”
Can Covid-19 increase the risk of developing Parkinson’s?
Parkinson’s could be caused or modulated by infections like Covid-19, a new study suggests – though more evidence is needed to draw a definitive conclusion. As part of the study, researchers from the Federal University of São Paulo, Brazil, drew on previous findings to support their hypothesis. For example, studies in mice have found that infection with some strains of influenza could cause neural changes similar to those in Parkinson’s. Furthermore, people born during or around the 1918 influenza pandemic were over twice as likely to develop Parkinson’s than those born in the decades before or after. Patrik Brundin, co-editor-in-chief of the Journal of Parkinson’s Disease, said that while it’s “too early to know what the long-term consequences of Covid-19 will be on the brain, the clinical psychiatry and neurology research communities definitely need to be vigilant in monitoring how those who recover from moderate and severe Covid-19 fare in…
New Parkinson’s trial platform could “dramatically speed up the search for a cure”
Scientists have proposed the use of a multi-arm, multi-stage trial platform (MAMS) to assess different potential treatments for Parkinson’s and help progress the search for a cure. This would depart from conventional clinical procedures, allowing several potential treatments to be assessed simultaneously. In a continuous process, each treatment ‘arm’ is evaluated and unsuccessful ‘arms’ of the trial are dropped, enabling a far more cost and time efficient system. Currently, MAMS are used to evaluate treatments for certain types of cancer – and work is underway to develop MAMS for other neurodegenerative conditions. Camille Buchholz Carroll, associate professor at the University of Plymouth, UK, and study author, said that MAMS trials could “dramatically speed up the search for a cure”. She said: “We have the opportunity to learn from the experience in these other conditions and design a new trial that will work for people with Parkinson’s.”