This week,
beginning 15 April, is Parkinson's Awareness Week focusing on
changing attitudes, using the strapline 'Put yourself in my shoes'. The idea
behind the campaign came from a person with Parkinson's who told them how much
he wished that people could put themselves in his shoes so they could
understand what life is like.
If you have read Shades of Appley Green you may know, or have guessed, that I have some connection with Parkinson’s. I worked in and around Basingstoke and Farnborough as Community Support Worker for the excellent organisation, Parkinson’s UK (then Parkinson’s Disease Society) for a couple of years before retiring in 2008. The title has now changed to Information Support Worker and along with specialist nurses, they do wonderful work nationwide.
Says the society's marketing
officer Clare Allen, ‘Working with people affected, we'll be using Parkinson's
Awareness Week to expose some of the realities of living with Parkinson's and
help the public to better understand the condition.’ She stressed how important
it is to get the word out, especially people who have had first-hand experience
of the condition.
A little while
ago I wrote about ‘Who or What Inspired my Characters’, remembering the days
when I travelled around visiting people in their homes or in residential
care.
‘I met some
extraordinary people endowed with both spirit and stoicism, rising above the
initial shock of diagnosis of a progressive illness, to live life as best they
could. Most touching of all was the mutual support between married couples; a
man and a woman each battling with a different set of problems but somehow able
to get along together and make a good fist of old age. One creative lady,
unable to do very much herself or get out of the house, had the unerring love
of a husband who would spend many hours furnishing and fitting out miniature
houses – like sophisticated dolls’ houses – in a given period, whether Regency,
Victorian or 1950s. Days, weeks, years were spent together working with bits of
wood, fabric and glue and an assortment of tiny household accessories to create
absolute masterpieces. They were wonderful.
Another lady lived alone, in what I
would describe as a shrine to all things Art Nouveau, including some exciting,
theatrical memories. Scarcely able to walk at all, she relied on a rota of
carers and a loving son who came when he could.’
But, sadly, I
also saw situations that were less comfortable, where the wider public did not
evidently understand the symptoms they saw. Someone who shakes, is slow to move or respond, and perhaps shuffles
when they walk may be assumed to be drunk, or have dementia, but of course this
is almost always not the case.
In Shades of
Appley Green there is an elderly, intellectual gentleman trapped inside a body
that would not do as it was told, a victim of both Parkinson’s and arthritis.
He becomes isolated. His children have long since flown the nest; his friends
have mostly died and he ‘rattles around’ in a big house. He was once famous, lived
a rich and interesting life, but who is to know now? Fortunately, he finds a
true friend in Steph, a single mother with problems of her own, who has the wit
to see that, whilst Parkinson’s is not going to go away (albeit controlled by
medication), something can be done to remedy loneliness.
Extract from Shades of Appley Green:
‘With a tea-trolley heading towards them,
Jackson was suddenly asked to step back. It was an abrupt interruption and she
saw how fast anxiety flooded his face, sweeping away the smile he tried so hard
to keep pinned-on from within the static Parkinson’s face. He had been politely
listening to Lilian, with immense concentration, hearing-aid probably full-on,
thinking heaven knows what, then out of the blue he was asked to “please move”.
“Come
along now,” said the lady in charge of the trolley, cheerfully, seeing no sign
of any attempt to get out of her way. “There’s a love. Just a wee bit more room
…”
Steph
put up her hand, as if controlling traffic. “Sorry! Just give us a minute, if
you would, please,” she said. “People with Parkinson’s need time. OK?” Turning
to Jackson, she whispered in his ear, “One, two, left, right, go!” and he
neatly stepped back two short paces. Any onlooker might reasonably question why
he had been so deliberately stubborn and slow to shift himself.
Lilian returned to them, by which time the
trolley had moved on and Jackson appeared to be calmly awaiting the next leg of
the tour.’
Says Steve Ford,
Chief Executive, Parkinson’s UK: ‘Can you imagine your body not doing what you
told it to? To deal with people staring or tutting when you struggle to get out
the right change at a supermarket till? Or how life would be if you were scared
to leave the house for fear of freezing to the spot or losing balance and
tripping over?’
If you have Parkinson’s or know someone who is affected by the condition, then it would be wonderful to hear from you. Leave your story below in a brief Comment or contact Parkinsons UK to help spread awareness of how the general public could perhaps be more empathetic and imagine themselves in the shoes of a person with Parkinson’s, or indeed, with another neurological condition.
I would really
love to hear from you; it may help others. Spread the word please. Retweet and
support.
You can find out
more here from Parkinsons UK
Review of Shades of Appley Green in Parkinson's UK magazine The Parkinson
Shades of Appley Green on Amazon paperback and Kindle
