While there are roughly 18,000 people in Ireland with Parkinson’s, it is still a very misunderstood condition. Parkinson’s disease is a progressive neurological disorder that mainly affects movement. It is caused by the loss of the chemical dopamine.
The condition affects everyone differently, and some people’s Parkinson’s progresses more slowly. Medication can also slow down the progression of the disease.
Physical symptoms can include a tremor, stiffness, slowness, a stooped posture, a change in the way people walk, a change to handwriting and impaired balance.
However, many people don’t realise that Parkinson’s doesn’t just affect movement. It can also cause anxiety, bladder and bowel problems, depression, fatigue, low blood pressure, loss of sense of smell, memory problems, and trouble sleeping.
The condition is often associated with older men, but there has been an increase in the number of younger people being diagnosed.
Here, we chat to stylist and fashion editor, Annmarie O’Connor, who was diagnosed with Parkinson’s to find out more.
Annmarie, who lives in Cork, had a very busy career and life editing magazines and attending photoshoots.
However, things quietened down during Covid, as lockdowns meant there were no shoots to style. It was during this time that she first noticed symptoms.
“It was September 2020, there had been a brief lift in lockdown restrictions. I had the opportunity to work on two photoshoots, back to back, which I did. I woke up with a really dull ache in my right shoulder.”
Annmarie assumed it was from doing the two shoots and carrying the heavy bags filled with clothes. However, within a matter of weeks, the pain became a lot worse and her shoulder became so stiff she was barely able to lift her arm.
Her right fingers then began to twitch, which became a steady shake with a wave-like rhythm. Annmarie called her sister to chat about it, and they both assumed it was a trapped nerve. She vowed to go to the doctor as soon as restrictions were lifted.
She went for three MRI scans, which ruled out a trapped nerve. By December 2021, her symptoms were growing. She had fatigue, her right leg began to drag, her right hand cupped inwards and she had restless legs. “I felt like I was walking in slow motion or through mud. I was writing Christmas cards and my handwriting was so small and cramped. I used to joke that they looked like ransom notes.”
Her doctor referred her to the acute medical unit, where she saw a neurologist who diagnosed her with early onset Parkinson’s. “It felt like a relief, but also like the wind had been taken out of my sails. I didn’t really know what Parkinson’s was, I thought it was mainly experienced by older men, with the actor Michael J. Fox being the exception.”
Her consultant explained that Parkinson’s occurs due to the loss of dopamine, which can affect gait, speech, bladder function, energy levels and more. “It’s called the boutique disease because no two people have the same combination. How fitting for a fashion editor,” Annmarie says.
She went home after the news and called her best friend, who came over to her house straight away. “It was hard to come to grips with something you were never really familiar with. It didn’t hit me straight away,” Annmarie says.
She was invited back to speak with the consultant, who advised her to bring a friend. At the second meeting, she discussed medication options and lifestyle changes. “For me, it was important to ringfence the years I was productive in terms of work, because I’m single and freelance. My symptoms were also quite difficult, so medication was right for me.”
Annmarie tried a few different types and doses of medication before finding the one that was right for her. “It took me 13 months to find the right one.”
Annmarie says many people don’t want to disclose their diagnosis, but she says it’s important to find someone to confide in. “I’m very privileged that my work, family and friends support me. I also have a platform in the media, I can share my story and help others. But not everyone is as fortunate as I am. They might be afraid of facing unconscious bias in work, maybe they are already caring for an elderly parent or a child with a disability and don’t want to add to the burden.”
Annmarie is able to share her worries and fears with her loved ones, which she is very grateful for. “You don’t want to be a burden and you don’t want people to know you as the person who is always talking about their Parkinson’s diagnosis.”
She adds that many people just think of Parkinson’s as a movement disorder, which it is, but it can also affect so much more as the chemical dopamine is responsible for so many bodily functions. “It can affect cognitive ability and cause brain fog. It can also cause things like anxiety, apathy and depression.”
She says apathy can be particularly insidious for people as they may lose interest in doing the things they love, as well as simple things like chores and daily tasks.
“People may stop feeding themselves well, they may stop showering, they won’t exercise. Parkinson’s is really dependent on lifestyle management so it’s important for people to look after themselves.”
Exercise really helps her manage her own symptoms. “It’s prescription free and slows down the progression of the disease.”
While there’s no definitive diet that people with Parkinson’s should follow, Annmarie tries to stick to the Mediterranean ‘blue zone’ diet, which involves lots of plant-based foods, healthy fats like olive oil and fish.
She also makes sure her gut health is optimised, as the medication she takes needs to travel through her gut. “One of the pre-clinical symptoms of Parkinson’s for 90 percent of people is constipation. It’s important to eat well, drink lots of water and exercise to have a healthy gut.”
Annmarie has noticed her speech has gotten softer, explaining that she isn’t able to project her voice as well as before. “There are different aides that can be used to help these things. It might sound scary initially, but they can be managed. A speech therapist gave me a plastic device that I blow into to strengthen my oesophagus.”
Overall, she is living well and she remains positive and grateful for what she has. “I audit my time on a regular basis. Of course, given the chance I will still sit down and watch The Real Housewives of Rhode Island for two hours! But on a more philosophical level, I don’t spend time on things or on people that don’t fill my cup.”
- Parkinson’s Ireland’s national freephone helpline is 1800 359 359 and opens 9am-5pm on weekdays. Visit parkinsons.ie
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