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“It affects every muscle of your body. It
can make it hard to swallow or to talk. There are bladder problems. It
makes you shake or makes you slow, or both. You take medication to move
more freely but sometimes it can make you move too much, so that you
cannot stop moving. The comfort band between these two extremes gets
narrower until it no longer exists.
“People with PD often have a mask-like face – my children used to call
it the Jones plastic smile. It does have its funny side. Once, I took
the family to the waxworks. As I was standing there for a moment, an
American lady said to her husband: ‘I can’t find this one in the
catalogue, Henry!’ But for the most part, it’s awful”.
Mr. Jones said that when he got the diagnosis, he created two David
Jones’s in his mind – one who was a chief executive, the other who had
PD. For many years, he kept his true condition secret, even from his
closest colleagues, even from his wife and children. “That was a huge
mistake. My colleagues thought I was hitting the bottle and my family
were mystified and worried. The pressure of pretence was even worse than
the disease”.
The way to cope with PD, Mr. Jones insists, is to be honest and open
about it. “Sufferers do not want sympathy or pity; what they need is
understanding and help with everyday things, like putting on a jacket
for example. It’s as simple as that, but absolutely vital”.
Mr. Jones was speaking at a meeting to launch a colourfully illustrated
book, I’ll Hold Your Hand So You Won’t Fall – a Child’s Guide to
Parkinson’s Disease (Merit Publishing International, ?14.95), written by
Rasheda Ali, daughter of perhaps the most famous victim of PD, the
former world heavyweight champion Muhammad Ali.
“Children often become confused and upset by what they see happening
to close relatives with a condition like PD”, she explained. “It was
a struggle when my two young children Biaggio and Nico were puzzled,
even frightened, by what was happening to their grandpa.
“I wrote this book to encourage good communication between family
members and friends affected by PD. I hope it will help families
communicate more effectively, to alleviate the strain that adults face
when trying to explain it to their kids”.
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