Whilst living in London, in 2006, I met my Australian-born husband Thomas and we moved to Perth in 2009. A few years later, in 2014, I gave birth to my first son, Marek, and when he turned two, we decided to move to Prague, Czech Republic, so he could learn my native language and bond with my Czech family.
Three years later, I fell pregnant with my second son, Filip. The pregnancy was a wonderful experience, and my first natural birth, as my first birth was C-section. Within four hours, my healthy baby boy was born, without any complications and anything traumatic occurring during the birth process.
For the next three days though, the isolation of being in a hospital room all by myself with a baby who cried and screamed non-stop all through the night, began to take a toll on my stress levels and gradually the lack of sleep began to impact my mental health. When the night nurses took my son away for a few hours so I could sleep, I obsessed about what could be happening to my baby. The distant crying sounds echoed into my room, amplified my anxiety as to whether I was a good mum or not. Consequently, I only accepted visits from my mum and husband.
Feeling disconnected
When I got home, even though my baby settled into a good sleep routine, the first 72 hours I found myself unable to sleep, a symptom of post-natal depression. As a result, I felt disconnected from reality and detached from my surroundings. Feeling that something was not right with my perception of the world, I called my mum and said: “I need help, I’m not coping.” She immediately took me to the psychiatric emergency room. Unfortunately they were not very knowledgeable around post-natal depression and the doctor suggested that I would be well in six weeks. I insisted that I needed immediate sleep support, so they suggested taking a sleeping pill as long as I stopped breastfeeding. I made the difficult decision to stop breastfeeding, so that I could take medication to calm me down and help me sleep. When I visited my GP the next time, she further prescribed me with night-time antidepressants and that slowly helped me with my sleep and mood.
Initial symptoms
After getting some rest for a few days, I began to notice tremors on the left side of my body. Consumed by my life with a young toddler and a newborn baby I put off going to the doctor. But three months later as the tremors persisted through my left arm and leg, I became increasingly concerned and went back to my GP.
I told her how although I felt better psychologically the tremors were ongoing and she referred me to a neurologist. When an MRI scan didn’t reveal anything, the neurologist just said how it was psychosomatic, as a result of the stress and postnatal depression I was under.
I continued taking antidepressants and when six months later the tremors didn’t subside, I went to another neurologist who was head of one of the best hospitals in Prague. After he observed my physical symptoms, mostly how my left hand didn’t swing when I walked, he straightaway told me he had a different opinion in terms of diagnosis, without mentioning what that was. He gave me a referral to another specialist that had written on it “possible Parkinism”.
A devastating diagnosis
When I met with that specialist, he verified that at 35, I had young-onset Parkinson’s disease. I showed many of the main symptoms, including tremors and weakness in my left limbs, loss of automatic movements, sleep disturbances, and depression. Upon diagnosis I hit rock bottom psychologically.
I was prescribed dopamine agonist (a key type of drug for treating movement disorders, especially Parkinson’s disease) and within three weeks the tremors stopped, and my depression subsided as I continued with the antidepressants. Determined to take control of my health I began reading reputable research. I switched to a healthier diet and as a result, I lost 15kg of my excess weight, I experienced mental clarity, and I started lifting weights at the gym, another lifestyle change found to potentially slow down the progression of Parkinson’s, which also made me feel physically stronger.
In January 2021, I sought the care of a neurologist at the Perron Institute and joined Parkinson’s Western Australia, a non-profit organisation dedicated to improving the lives of its members. They quickly provided me with in-house private nurse support which at first, I didn’t think I needed. I’m young and fit and can get myself to doctor’s appointments.
However, when she came to visit me for the first time, I broke down crying. These nurses specialise in Parkinson’s patients, so she was very empathic and took the time to listen to my concerns. Subsequently, she was able to uplift my spirits by sharing with me stories of her patients who continue living full and flourishing lives and how this disease is manageable through diet and exercise, a reassurance that I never had from my doctors that boosted my self-esteem. Importantly, she made me realise that I didn’t need to go through this alone.
Looking after myself better
The Parkinson’s medication continued to keep my tremors at bay, I was off my antidepressants, I could sleep well. I maintained my wellness journey which contined to include daily visits to the gym, but also help from a naturopath who suggested supplements, such as magnesium which is good for the muscles and Vitamin-B complex which is good for the nervous system, sleeping and the brain. She put me on a gluten- and dairy-free diet and I began getting up at 5am to practise yoga and mediate.
But, after a while I started experiencing panic attacks. I noticed they were triggered by stressful thoughts or when I was exposed to situations that made me nervous, felt surprised or forgot something. I was then given an anti-anxiety medication, which helped. But towards the end of 2022 I began limping on the left side of my body, which was the side mostly affected by Parkinson’s. Subsequently my knee began to hurt, so I went to an orthopaedist, but it didn’t help. My neurologist recommended I begin taking a dopamine replacement agent for the treatment of Parkinson’s disease, mostly related to motor movement. I was hesitant as this would be my last solution before trying deep brain stimulation surgery, but my neurologist assured me that it would improve my quality of life and help me enormously with my movements. I now take it every four hours which stops me from tremoring and limping, and allows me to live a full life.
Through my government funding (NDIS), I’m entitled to access psychological and other support services. I did try talk therapy, but it wasn’t for me. Instead, I prefer chatting with a girlfriend over a glass of wine, but I do see a life coach on a monthly basis and that has been immensely beneficial to me. She’s not only provided me with helpful lifestyle practices like positive healing affirmations, and journalling exercises which have allowed me to gather my thoughts including practising gratitude every morning, but she’s helped me set ongoing health and life goals. I also trained in reiki healing, which I practise daily and is about supporting myself through energy healing and releasing trauma, which I believe is vital to me getting well.
Helping others
By way of supporting others, I take part in Parkinson’s WA annual community outreach fundraising event, called ‘A Walk in the Park’. I also make gemstone bracelets and donate part of the profits to their work, because this is how the nurses are funded and their services are very helpful.
Despite the challenges of Parkinson‘s, I feel great and I’m the fittest and healthiest I‘ve ever been. I’m not saying I’ve found my healing path yet, but I’m on my way to getting well. My two active boys and my part-time job that I love keep me busy, but they also make me forget about my condition most of the time. Both my sons understand that Mummy has Parkinson’s and sometimes shakes, and they‘re very supportive, but they also don’t notice it anymore.
This illness changed my perspective on life. It taught me to live more in the moment and only to do what I love. When I faced mental health challenges after the birth of my second child, it really made me aware of the seriousness of depression. Before, I was a bit quick to judge people who faced depression. Now I have a lot more understanding of mental health issues because, having gone through it myself, I know it’s something you can’t control.
I’m now thankful for every minute I have with my loved ones, and I try not to think negatively about how my health will be in the future.
Understanding Parkinson’s Disease In Women
Parkinson’s disease is a brain disorder, caused by loss of dopamine cells in the midbrain. A person becomes symptomatic when 65 to 70 per cent of the dopamine cells have died. Unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination are symptoms of the disease.
Parkinson’s is usually diagnosed in people over 60. If a person is diagnosed before 50, they will be considered to have early-onset Parkinson’s disease. Today, over 12,000 New Zealanders have Parkinson’s and over 150,000 people are living with Parkinson’s in Australia, of whom 10-20 per cent are living with young onset Parkinson’s.
Professor Louise Parr-Brownlie, from the Department of Anatomy, University of Otago, says that exposure to heavy metals, pesticides, and some chemicals increases the risk of Parkinson’s disease and only about 15 per cent of people with Parkinson’s disease have a change in their genes that explains their diagnosis.
“Further, only about one third of people living with Parkinson’s disease in New Zealand are women. One reason for that is that the hormone oestrogen may be protective for neurological disorders. However, post-menopause, the risk of Parkinson’s disease increases to the same rate as men,” says Professor Parr-Brownlie.
In terms of early-onset Parkinson’s disease in women diagnosed in a postnatal stage, Professor Parr-Brownlie explains that it’s likely that dopamine cells had already been dying in the brain for 10-20 years before they were pregnant. “Diagnosis during or soon after a pregnancy may be coincidental timing, the women would have received the diagnosis even if she hadn’t been pregnant,” she adds.
Yet, neuroinflammation may have a role. “During pregnancy the body is in an anti-inflammatory state to support the ongoing pregnancy. About four days after the baby is delivered, a women’s body changes to a proinflammatory state, possibly due to the stress of giving birth. This proinflammatory state might accelerate the rate of dopamine cells dying in the midbrain. The pregnancy per se didn’t cause Parkinson’s disease – dopamine cells have been dying for a decade. When Parkinson’s disease is diagnosed post-partum, the delivery was the most recent stressor that resulted in reaching the 65 per cent threshold of dopamine cell death, so that symptoms were expressed.”
To help slow down the progression of Parkinson’s, Professor Parr-Brownlie recommends: at least 30 minutes of daily exercise; eating a healthy diet with a lot of fresh fruits, vegetables, unprocessed foods and healthy oils like omega-3; 8 hours of quality sleep; reducing stress; spending time in green spaces; and reducing gut inflammation.
