Dear Gazette readers,
For over sixteen years, ever since my brother in law Gordon Scarfe was diagnosed, I have seen at first-hand what it’s like to live with Parkinson’s, and what a struggle it can be to cope with this progressive and potentially devastating condition.
In many ways Gordon is lucky, as he has a loving and supportive family around him. Some people struggle on their own, and, heartbreakingly, this is often because they are frightened to share their diagnosis. According to new findings from Parkinson’s UK, released to highlight this month’s Parkinson’s Awareness Week, nearly two fifths of people with Parkinson’s feel the need to hide their symptoms or lie about their condition to those closest to them.
There are 127,000 people living with Parkinson’s in the UK, and someone is diagnosed with the condition every hour. Parkinson’s UK estimates that, sadly, 42,000 people in the UK have delayed sharing their diagnosis with someone close to them.
What this means is that fear of ‘coming out’ about Parkinson’s is preventing people from seeking the vital support available, just when they are struggling emotionally to cope.
Nearly twenty percent of people surveyed said it ‘felt like my world has ended’ in the year following diagnosis. It particularly upsets me to learn that the problem is especially acute for younger people, who may be trying to juggle demanding family and work commitments whilst hiding life-changing news.
No one should feel alone in dealing with a diagnosis of Parkinson’s. I am determined that each and every person with the disease should be aware of the support available so that they feel able to face the future, rather than hide from it. There is so much that can be done to help, and I can’t bear to think of those diagnosed suffering unnecessary fear and anxiety on their own. I hope this letter will encourage those among your readers who are affected to contact us and to help them feel more confident about sharing their diagnosis with someone close to them.
For more information on support available, please visit parkinsons.org.uk or call our freephone helpline 0800 800 0303.
215 Vauxhall Bridge Road
London SW1V 1EJ