'I was shocked by the Parkinson's diagnosis, but I knew I had to tell my family'
To mark Parkinson's Awareness Week a charity will hold a Belfast Community Day on Thursday to help sufferers dealing with this condition
Nearly two-fifths of people with Parkinson's (37%) have felt the need to hide the symptoms or lie about having the condition, according to new findings released today by Parkinson's UK.
The research, released by the charity at the start of Parkinson's Awareness Week, has revealed an alarming level of fear around sharing a diagnosis of Parkinson's, cutting people off from vital support just as many report struggling emotionally to accept their condition.
There are 3,600 people who are suffering from Parkinson's in Northern Ireland, with someone diagnosed with the condition in the UK every hour.
The charity will hold a Parkinson's Community Day at St Bride's Parish Hall, Derryvolgie Avenue, Belfast on Thursday, and various speakers will help to provide an insight into the condition.
The charity is concerned by the findings, which reveal a worrying level of emotional repercussions for people diagnosed with Parkinson's. More than a third (37%) of those surveyed experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people. Many (18%) reported feeling "like their world had ended".
Jack Glenn, (73) from Londonderry who was diagnosed 10 years ago, says: "When I was diagnosed, I felt in shock. I was angry and depressed, but I knew I wanted to tell my family immediately. I felt it had to be said, there was no point prolonging the news and I didn't want to make a secret of it."
Jack explains: "I didn't want the wrong information getting out and I wanted people to know from me that I had received this diagnosis."
He recalls: "I have never lied about my symptoms, but when I was first diagnosed I did try to hide my symptoms. To be honest it was about my self-esteem and I didn't want people to see me with a tremor, I didn't want them to think I wasn't 100% well. That doesn't bother me at all now."
People who have shared their diagnosis with their immediate family reported feeling "able to accept they had Parkinson's" (45%), while one in four reported feeling relieved (27%), and 15% said they felt glad that they didn't have to hide their symptoms any more.
- Places can be booked for the Parkinson's Community Day on Thursday, contact Catherine Murnin, area development manager, tel: 0300 123 3677 or email firstname.lastname@example.org
- For advice, information and support, visit www.parkinsons.org.uk or call the free, confidential helpline on 0808 800 0303