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A research team from University College Cork (UCC) found stigma was frequently encountered in social situations where people with the disease felt “pitied, misjudged or closely observed by others”. About 15,000 people in Ireland live with the progressive neurodegenerative disorder Their experiences ranged from being mistaken for being drunk to acute social isolation as their voice gradually gets lower and lower, leaving them excluded from conversations going on around them. It is estimated that there are currently about 15,000 people in Ireland living with the progressive neurodegenerative disorder, which is caused by a loss of dopamine, leading to tremors, stiffness and slowness of movement. In the new study by UCC, published in Clinical Parkinsonism & Related Disorders, 10 women and 11 men spoke about their experiences under pseudonyms, describing everything from the initial shock of learning they had the disease to coping with worsening symptoms. Experts have described Parkinson’s disease as a silent pandemic as it has becomes the fastest-rising neurological condition globally, fuelled by ageing populations and improved diagnosis. The World Health Organisation predicts that by 2040, neurodegenerative disorders such as Parkinson’s and Alzheimer’s will overtake cancer as the world’s second leading cause of death. Katherine is among 21 people who made frank and sometimes heart-breaking admissions about living with the degenerative neurological disorder in Ireland in the new study. She recalls making her way down a supermarket aisle with difficulty, and a store clerk exclaiming: “Jesus. You could have waited until after 12:00 before you had your first drink.” Fifteen years on from her diagnosis of Parkinson’s disease, the 51-year-old recalls the incident vividly, describing how it caused her daughter to burst into tears. I’ve had funny remarks made to me, like ‘Were we on the soup last night?’ Mistaken assumptions about tremors being the result of alcohol intake cause particular distress for many. “I’ve had funny remarks made to me, like ‘Were we on the soup last night?’ — that sort of remark,” said 70-year-old Ava in the study. “I’ve had that said a couple of times, and you could give a sharp answer and say, I have bloody Parkinson’s,” she said. A recurrent source of anxiety is visits to the supermarket. “You’re trying to keep up with the pace of everybody else and if you put yourself under that pressure, then you stall even more,” said Max (65) who was diagnosed 17 years ago. Matt, who is 58, said: “I wasn’t ready for a diagnosis of Parkinson’s disease at age 44 and it completely blew me out of the water.” Thirteen years on from learning he had Parkinson’s, Trevor (72), said: “I was gutted. I was searching for answers — how it could have happened to me, what caused it?” Some participants reported comforting loved ones when they broke the news. “My husband burst into tears when we left the clinic, so I was the one comforting him.” Eleven years on from his diagnosis, 62-year-old David bristles at Michael J Fox’s pronouncements about accepting the disease. “If you don’t mind me using the derogatory term, Michael J Fox can take its acceptance and shove it where the sun don’t shine. Have I fully accepted it? No,” he told researchers. The study, led by Francesca Gaiera, found that most participants admitted, often with resignation, that no one in their close circle would genuinely ask how they were feeling about their illness. Voice changes were another common social barrier, limiting their ability to take part in conversations. “When you get a diagnosis of Parkinson’s, your voice begins to fade. And that’s really a problem because if you can’t be heard, you’re going to be excluded naturally from the conversation,” said Matt (58), who was diagnosed 15 years ago. The study found that people with Parkinson’s experience a wide range of symptoms that can take a heavy social and emotional toll. It highlights the need for better support immediately after diagnosis, including clear communication, education and access to counselling or peer-support groups. The HSE said around 18,000 people in Ireland are living with Parkinson’s disease, with incidence rates of 1–2 per 1,000 in the general population and one in 100 among those over 80, while roughly 10pc of cases are diagnosed before age 50. The HSE says it funds a range of community services and supports to help people with disabilities, including Parkinson’s, to live as independently as possible. Voluntary organisations such as Parkinson’s Ireland also provide nurse-led helplines and clinics, wellness and exercise classes, and a range of information, advocacy, research, and support services.
