Many sufferers of Parkinson’s disease are struggling with their diagnosis alone due to fear of what people might think.
Parkinson’s disease is caused by a loss of nerve cells in part of the brain called the substantia nigra, and exactly what causes this loss remains unclear. According to the National Health Service (NHS), there around 127,000 people living with Parkinson’s in the U.K, with the three main symptoms of Parkinson’s disease being tremors, slow movement or stiff and inflexible muscles. A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms, including depression, memory problems and insomnia.
In a new study, Parkinson’s U.K. interviewed over 1,800 people with the disease and noted an alarming level of fear around sharing a diagnosis. The research, which was released to mark the start of Parkinson’s Awareness Week (18-22Apr16), found nearly two fifths of people with Parkinson’s have felt forced to hide their symptoms or lie about having the condition.
Those who did feel the need to hide their symptoms reported not wanting people to feel awkward or embarrassed around them, felt they would be judged, or were concerned that their symptoms were not socially acceptable. Those who delayed telling family or friends said it was because they often did not know how to bring it up, did not want to accept their diagnosis or weren’t able to find the words.
This means people can be cut off from the vital support available at a time when many report struggling to come to terms with their condition.
Positively, 45 per cent of those surveyed and who shared their diagnosis with their immediate family reported feeling able to accept they had Parkinson’s. Meanwhile one in four reported feeling relieved and 15 per cent said they felt glad they didn’t have to hide their symptoms any more.
David Burn, Clinical Director of the UK Parkinson’s Excellence Network said it is alarming to discover so many people felt that they could not share their diagnosis with those around them because they were worried about the consequences, or couldn’t word it correctly.
“But it’s also promising to see that those who did have the confidence to share felt it made a positive difference,” he said, further urging medical professionals to be proactive in encouraging people to access support.