Our Parkinson's Place: Third of people with Parkinson's hide their symptoms due to 'embarrassment'

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Thursday, June 9, 2016

Third of people with Parkinson's hide their symptoms due to 'embarrassment'

A survey for Parkinson's UK confirms many of those who live with the condition believe their symptoms are not socially acceptable

Muhammad Ali lived with Parkinson's for over 30 years

9 JUN 2016

With the passing of our beloved Muhammad Ali last week who suffered from Parkinson’s my mind turned to a very good friend who’s had a stellar political career, written bestselling books and shares my passion for gardening and who’s in the early stages of the disease.

I noticed the last time I met him he had a slight trembling of his hands which he easily controlled by grasping a newspaper or magazine.

Neither of us mentioned it. But along with more than a third of people in the UK with Parkinson’s disease, he feels the need to hide his symptoms. And a survey for the charity Parkinson’s UK confirms many sufferers feel compelled to deny having the condition.

They believe their symptoms are not socially acceptable and may embarrass family and friends.

The charity’s spokesman said too many people struggle alone which affects their emotional health.

Fear of stigma is one of the biggest causes of anxiety in sufferers

Parkinson’s disease affects around 127,000 people in the UK – that’s about one in 500 people. The main symptoms are tremors, typically described as “pill-rolling” between the thumb and first two fingers.

There is also rigidity and slowness of movement, so movements become jerky. Other symptoms are a shuffling gait, greasy skin and small writing.The charity surveyed 1,868 people with the disease to find out how they dealt with news they had Parkinson’s. Fear of stigma seems to cause the most anxiety.

One in three said they’d delayed telling friends and family about their diagnosis with one of the main reasons being the fear of people stigmatising them. The charity said the findings also revealed a worrying level of emotional repercussions that jeopardise the mental wellbeing of people diagnosed with Parkinson’s.

Younger people (30 and over) reported being hardest hit by the diagnosis to the extent that many said they felt “like their world had ended” and said “they didn’t know who to turn to”.Like Ali, Michael J Fox (who developed it at 30 and is still active) should be an inspirational role model.

Steve Ford, chief executive at Parkinson’s UK, said: “We are determined that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations.

“We know that the right support, whether through family, friends or Parkinson’s UK, is vital for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone. We are here to help people find the support they need, when they need it.”