More than a third of Scots with Parkinson’s could be missing out on vital support as they feel the need to hide their symptoms or lie about having the condition, a survey has found.
Campaigners revealed a significant level of fear around sharing a diagnosis of the degenerative neueological condition, which affects more than 10,000 people in Scotland.
Of those who did feel the need to hide their symptoms, 63 per cent said they did not want people to feel awkward or embarrassed around them, while a third felt that they would be judged.
There is currently no cure for Parkinson’s, which causes patients to suffer tremors, slowness of movement and rigidity.
Katherine Crawford, Scotland director at Parkinson’s UK, said people were missing out on vital support after diagnosis because they felt ashamed to speak out.
She said: “No-one should feel alone in dealing with a diagnosis of Parkinson’s. Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do.
“Dealing with Parkinson’s without support is really difficult. It can have a major impact on people’s emotional health, wellbeing and ability to cope.
“We are determined to make sure that each and every person with Parkinson’s in Scotland is aware of the support available to them as soon as possible after diagnosis, so that they are better equipped to have what are, all too often, very difficult conversations.”
Some patients reported receiving notice of their diagnosis by letter, when they should have had access to support from medics.
Dr Jean Turner, patron of the Scotland Patients’ Association, said: “It is very important to get a diagnosis for conditions like Parkinson’s as then you can access help and treatments.
“Coping with the diagnosis and the difficulties that come with being afflicted by the disease, that is difficult.
“As we have an ageing population, clearly more people are going to live long enough to be diagnosed with many of these conditions.
“We need to acknowledge that there will be more people with conditions like Parkinson’s and we need to find ways to make sure they get the care they need in their own homes if we can.”
Ministers pledged £250 million towards improving social care this year as part of plans to shift the balance of care away from hospitals into the community.
Case study: ‘I turned into a different person’
Receiving a Parkinson’s diagnosis at just 24-years-old sent Gary Jamieson spiralling out of control.
He had suffered from some symptoms since he was 21 but he dismissed the small shakes as nothing at first.
When he was finally diagnosed, Gary, of Dundee, struggled to come to terms with the news and he also suffered from severe reactions to some medication.
Gary, now 34, said: “I felt I had to live life at a hundred miles an hour and went right off the rails.
“Problems with my medication made things even worse and I turned into a different person and seemed to get involved in every bad habit you can think off.
“I’m embarrassed looking back on it and it still hurts that I lost everything – I was so unbearable and chaotic that even those close to me had to give up on me for their own safety and sanity.”
He credits his family and his Parkinson’s Local Adviser for helping to bring him back from the brink.
Along with his younger brother Grant, who was also diagnosed with Parkinson’s last year at the age of 29, Gary has been fundraising to help find a cure for the condition.