Saturday, 12 October 2013

After the radio interview …

BBC Surrey Breakfast Show, Saturday 12 October 

Thanks to local councillor @PaulDeach who listened to my interview live and reacted immediately, this interview is put into context as a more permanent podcast on the Surrey Heath Residents' Blog.
And on iTunes  

no longer available on BBC website)
Speaking live on an early morning radio programme can be deceptively challenging. Firstly, you have to be awake! Then, for example, before sun-up and in the rain, negotiating the Pirbright bends, where the road is strewn with branches and massive surprise puddles, you strive to get to the Guildford BBC studios in time for your precise slot.
Also there is the sensitive nature of the topic. Travellers. Gypsies. Planning applications and prejudice. Yes, enough to wake anyone up when presented with a list of alleged crimes and anti-social behaviour that are, apparently, solely attributable to Gypsies and Travellers.

Thankfully such sweeping allegations against the travelling community are becoming fewer in the wider population. I think so, anyway, but there are always a few who refuse to see them as human beings, in most ways just the same as anyone else. The key difference is that some GandTs wish to retain aspects of their culture, with regard to moving around for work and social gatherings, and pursuing traditional ways of earning a living: tree surgery, garden maintenance, fencing etc; laying tarmac (less so now); scrap metal. This type of work would not fit easily on your average residential estate or road, and it is entirely right that they should be accorded somewhere for them to fulfil their role and pitch a trailer. This is really all they ask for; somewhere within reasonable reach of schools, shops, doctors and so on.
These people are descendants of those Romany Gypsies who years ago co-existed quite comfortably within the context of rural England, making things like pegs and baskets, virtually out of fresh-air and the hedgerow, or offering a useful service such as knife-grinding. Travelling and stopping has become nearly impossible, with so many laws that make this and doorstep selling difficult; now, even remaining static in their family groups is almost as impossible!
Local authorities are trying to do their bit, I feel, but as ever, once they do their assessments, find a suitable plot of land, which is not easy to say the least, the big hitch in the process is the general public’s resentment. Whilst acknowledging the need for site provision, there is still a strong element of NIMBYISM.
How about we all try and turn things around? Instead of dwelling on possible negatives, perhaps, for the sake of their children and grandchildren especially, we should do our bit to accentuate the positive.
Hey!  I hear some Romany Gypsy or Irish Traveller families are settling in near us! I would so like to know more about them and their fascinating culture first-hand. What you see on TV and read in the papers is probably not a fair representation. I shall make a real effort to make them welcome and help them fit in with our community. I’m dying to find out about what the older members can remember of times gone by!
You can compose your own version of course.

Do some follow-up comments come along from the listening public? (I am still listening to the programme, so watch this space...!)
POST SCRIPT: No, apparently there was little negative response this time, for whatever reason.


Tuesday, 8 October 2013

Ted’s mission: ‘Time and attention’

Neglect of our elderly living at home has really hit the headlines in the media. You must have heard or read something about the 15 minute agency visits, inadequate for most aspects of caring for a human being.  
When you are not old yourself it is a side of life that can easily be ignored, forgotten or pushed to the bottom of the list of priorities in the huge arena of social issues. The slow murder of young children shocks us more, and we can but hope that such tragic, heart-rending incidents are few. With the ageing population, however, this lack of proper regard for the elderly may be on a massive scale.
I remember when working in a Social Services department in the early 1970s, the big move was to get away from ‘putting old folk into Homes’ and make sure they stayed in their own homes. ‘Domiciliary care’ was the term bandied about as offering a rosy future for the new generation of elderly people. For so many it has all gone wrong. Residential/nursing care is very expensive, this we know. The overheads are huge. I don’t know the relative costs of caring for an elderly person in their own home, but it would seem that such domiciliary services have been pared down to the bone. 
This is an aspect of social change that is fundamental to the story in Shades of Appley Green.
I thought it timely to provide an extract, so you can see what I mean. There is a love story and a lighter side of community and family life going on in the book, but the cornerstone of the story is the mission given to young mother, Steph, by deceased landowner, Ted Devonish, who is already known to readers of my first two books.
This is early on, where she has a meeting with some healthcare professionals in the local hospital. 

“So, tell us a bit more about your charity, could you Steph?” asked Nora, the Parkinson’s specialist nurse. “How long has it been going and what sort of things do you do?”
Steph was always pleased to have the chance to promote SSS and hoped that word of mouth would work its magic – and perhaps a mention on the hospital website.
There was a local benefactor called Edward Devonish. …”
… Steph blinked and collected her thoughts. e pulled her to one side“Anyway, divorced and living alone, he died suddenly two years ago. Tragic. Great sadness in the village.” And great sorrow for me, she wanted to add, but thought it best to keep aloof from the grief she had felt at his loss. “Sometimes it seems it’s always the best people who go before their time, doesn’t it?”
Nora and Heather nodded politely but Steph could see she had overstepped the mark. Be professional, she told herself sharply.
She continued, “His only child, daughter Natalie, had always made it clear she had no wish to be involved in farming, even at arms’ length. His total estate, once sold off realised a tidy few million. Now, he bequeathed a portion of this to a charity and for that he set out some rules. It should be used to set an example of a charity giving special support to senior citizens who need it. For example,” and she handed over a small brochure that set out the SSS mission, “more than personal care, medical attention, financial guidance. Not just housework either, necessary though that is, but on top of that, for those elderly whose families were too distant or too busy, they should be given time and attention.”  Steph stressed the key words, just as Ted used to. She would never let that man down.

Nora nodded, as she scanned the leaflet. “Certainly what people with Parkinson’s need. Everything slows down and not everyone appreciates that.”

A mental picture of Jackson filled the screen inside her head. “Ted knew that so many isolated old people need someone who can listen and respond; treat them with respect as an individual; without being in a rush, think what that particular person really needs based on the lives they have led.”
“Aren’t there charities and agencies who already do this? They have volunteers and even paid support workers who visit, don’t they? Befriending services?” asked Heather, looking at her watch not quite discreetly enough.
“There are, and they do an excellent job, but there aren’t always enough to go round. Carers are inevitably pressed for time by agency schedules. Time costs money. Often there’s little continuity so carer and client really don’t bond – don’t have time to bond. Nobody’s fault, just a fact of life. And volunteers come and go. Few people can afford to give of their time for nothing these days, however much they’d like to. Edward Devonish saw it as important that consistent, visiting friends should be rewarded and … well, have training to be professional so they could also offer information and support.  He said it must be self-funding after five years and set an example so other branches will set up in other areas – without his initial financial backing obviously.”
“So a lot hangs on the success of this pilot then?”
Yes, she thought, all eyes are on me in the village. “Exactly. It’s my job to ensure that Special Support for Seniors has a future.”  Her commitment had extended to giving up a well-paid job but they did not need to know that either. There was so much more to it than that.
Nora raised her eyebrows and threw her a sympathetic smile. “To set an example? Wow, no pressure then! What a challenge Steph! To be self-sufficient sounds demanding, to say the least.” Steph really liked Nora; she was excellent at her job and people respected her for both her expertise and kindness.
“Yep. But Ted Devonish had the foresight to see that if the charity could draw on his bequest indefinitely its staff would just see it as another paid job and be less motivated.”
“So – you have to fundraise as well? I mean, as well as actually helping local clients in quite a direct way.”
Steph nodded. “We need to recruit a dedicated publicist and fundraiser – obviously who can raise much more than they are paid. It’s early days for that, though. First, we need to get the whole thing working."

“Who else works for SSS?”
“I report to a manager – whose role it is to secure other funding like lottery money, trusts and legacies, that sort of thing. And …” she added, reluctantly, trying not to baulk at the words, “… manage me.” The notion of being managed was too close to being bullied in Steph’s eyes. Her mind flicked back subliminally to when she began keeping written records on how she was once ‘managed’ … at a time when she was so desperate for work she dared not open her mouth to anyone about what her manager was doing … Would she want Faith to read about that in the diary?
“What have you achieved so far then, Steph?”

Shades of Appley Green, is available as a paperback or on Kindle from Amazon, (or from Waterstones bookshops) First published in February 2012.

BBC UK News ‘Disgraceful’ short-care visits on rise, says charity.’


Thursday, 26 September 2013

Surrey Gypsy Traveller Communities Forum

It is bit of a mouthful, isn't it? But it does say exactly what it is. If you are interested in Gypsy issues but, like me, decided that the meeting in London would be an expensive trip unless you are funded by an organisation, then another October meeting may be for you. For some years now I have attended the Surrey Gypsy Traveller Communities Forum when I can, as an observer.
These meetings provide an excellent opportunity to gain an up to date understanding first-hand of what is going on, not just on the big, overwhelming issue of site provision.  As described on a flyer, the forum is ‘a public meeting for individuals, agencies, charities and voluntary groups to meet informally with members of the Surrey Gypsy Traveller Community.’ I have heard heart-breaking accounts from mothers of hardships endured by the Gypsy and Travellers communities, and frustrations of fathers who battle with the authorities to find a place for their family to live; as well as how the various agencies deal with difficult situations.

This meeting is covering the new regulations brought in under the Scrap Metal Act 2013. No doubt there will be divided opinions on this. Scandalous and scurrilous dealings in the industry must be curbed, but you can imagine how someone whose literacy skills are weak would feel when confronted with the bureaucracy here:  Scrap Metal Act 2013
Other perennial issues will also be debated – education, health, planning etc.

This meeting is free, open to members of the public, held at 10.00 am on Tuesday, 22 October 2013 at the Runnymede Civic Centre, Station Road, Addlestone, Surrey KT15 2AH (parking at Garfield Road car park).
By the way, as you’re here you may like to see a couple of lovely reviews that came about recently. A lady found me on Twitter and my books on Amazon, or perhaps the other way round.  Thank you JennCarol aka @JennyGaluschka on Twitter

'Art as an agent of social change' – a review of Gypsies Stop tHere!/2013/09/art-as-agent-of-social-change.html

'Who do you believe you are?' – a review of No Gypsies Served

Perhaps I shall see you at the Forum meeting on 22 October!

Wednesday, 14 August 2013

The Latest on Gypsy and Traveller Sites

There is to be a great meeting in Westminster in October to discuss the provision of sites for Gypsies and Travellers. 

As you may know, my first two novels, Gypsies Stop tHere and No Gypsies Served have story lines relating to the shortage of Gypsy sites and relationships between.the travelling community and mainstream society. In my early research I became very intrigued by the causes of this and why it has become such a social issue everywhere. I came to realise in my investigations that the on-going, sorry situation was bound up in a tangled web of history, culture, tradition, justice, planning laws and widespread beliefs in society that sometimes can only be described as prejudice. As with any section of society, people tend to remember unhappy incidents where there is some kind of conflict or tension, and then apply their conclusions to a whole group of people. Such negativity is often at the core of racism.

A key problem is availability of land and I fully appreciate that, but the amount of land required to provide sites where Travellers and Gypsies can live in a trailer instead of a house, is on a remarkably small scale. As far as I can see, it could be incorporated into planned housing developments; the only difference being that a hard-standing pitch is needed instead of foundations for a house. Put like this, unless you are a property developer, does it not seem a fairly simple and modest request? 

Traditionally, the travelling community live in family groups and do not care to do their ablutions or laundry in the trailer so some kind of utility ‘shed’ is preferred for washing and toilet, as you might find on any regulated holiday campsite. None of these requirements is beyond the wit of man, or the planning authorities. Also, where a Gypsy or Traveller has purchased land to set up home, then certain criteria could surely be devised that could accommodate this without contravening planning laws. If it is land that is an Area of Outstanding Beauty; strictly agricultural or green belt, then no. If it is a piece of land that might be used for building bricks and mortar, or a reclaimed brownfield site, then possibly. This is oversimplifying, but surely government and planning experts could come up with a compromise formula if they were willing. 

The stumbling block for councils to provide as they should is often down to the general public raising objections. These protests can arise as a result of ugly perceptions that have grown due to the mess associated with unauthorised sites. You see where I am going? By the way, it is always worth re-stating that authorised Gypsy sites are, almost always, kept immaculately.

If you want to know more, here are some links you may find useful. Actually, I am underselling them - they make fascinating reading! Just make yourself comfortable for a few minutes.

Local Government Secretary Eric Pickles; Chairman of the Gypsy Council Joseph Jones; Chief Executive of the Irish Travellers Movement Yvonne MacNamara;  Prime Minister David Cameron; some widely opposing views reported here. The Westminster briefing will be a fascinating debate to follow.

Here is an abridged version in Inside Housing

Surrey Heath Residents Blog

See the heated conversation that struck up here in November 2010 in response to my piece on a local issue. This situation was not typical but a very specific circumstance relating to Showmen; however the discussion that ensued was more typical.
If you are new to all this and would like a more relaxing way to gain some understanding of the various sides of this important debate, then you could start by reading my novels, an 'easy way in' as one reviewer said. 

Tuesday, 23 July 2013

I Wrote it My Way - Emma Calin

Today I am delighted to welcome Emma Calin who describes herself as a woman eternally pedaling between Peckham and Pigalle, in search of passion and enduring romance!

Born in London in 1962, she now lives part of the year in the UK and spends the rest in France. She has been writing since childhood and has won numerous local, national and international prizes for poetry and short stories.
Emma enjoys writing love stories firmly rooted in social realism (as do I!). She blogs about the contrasts in life on both sides of the English Channel, which she likes to explore on her tandem whenever weather and fitness coincide. Like me, she is a Lifestyle Contributor on Loveahappyending Lifestyle.
She explains:

'I have never been able to write about anything completely imaginary. I admire writers who can create worlds, magic or supernatural beings. I think I would have been very much at home with the books of the 1950s/60's such as “Room At The Top” by John Braine and “Saturday Night And Sunday Morning” by Alan Sillitoe.  These were “angry young men” writers. Both pop legend Morrissey and  group the  “Arctic Monkeys” acknowledge the influence of Sillitoe. Another influence was “Last Exit To Brooklyn” by Hubert Selby jnr. All of these books are social realist accounts of life either at the margins of society or among the proud working class. Social and class structures have changed since then. In the UK, there is no longer a stable blue collar class. Globalisation has swept away the certainties of that period. However, this was my childhood.

In writing the five units of  my newly launched Love in A Hopeless Place Collection  I have tried to catch the spirit of people who work manually in low paid jobs. I have followed a completely haphazard career path among such situations in order to write about them. The colour and resilience of these characters has always overawed me. My stories are a very humble tribute to some genuine true life heroes. The title does indeed come from the Rihanna track because it plays on a car radio in one of the novelettes in the collection. It also reflects the sentiment of the series. I have commented before that the only hopeless place for love is in a cold heart. There are few of those in this collection.

 Each of the five titles in the collection is available as a stand-alone e-book for Kindle, iPad, Android, Mac, PC etc.  on Amazon Worldwide:
Or you can save money and buy the complete 'boxed set' Love in a Hopeless Place Collection 
I would like to thank Miriam for having me on her blog as part of my 'Blowing My Own Trombone Book Launch Blog Tour'. If you would like to find out more about the books in my collection, see some excerpts and even hear me play the trombone.... (yes really!)'
Emma, it is very exciting to have you visit and always fascinating to know more about what inspires writers who are so different from each other. If you take a stroll through Miriam's Ramblings you will see what I mean. What leads authors to their chosen genre and style?

Thanks Emma!
Emma tells me that during July and August, ANGELA, the short story from the collection is FREE – so you can even try one before you buy! Emma will also be having a Summer Sale –  ALL books in her portfolio for 99c/76p/89€ until the 1st August. Such a bargain!

If you'd like to know more about Emma and her books, she will be guesting at the following blogs during July:

17 July Anneli Purchase
20 July Sheryl Browne
21 July Nicky Wells
26 July Patricia Sands
27 July Stephanie Keys
28 July Linn Halton

Emma Calin Links:

Wednesday, 3 July 2013

Sunny Surrey Summer Wedding!

Yes, sunny and warm!  Our daughter was married on Saturday, possibly the sunniest weekend of the year so far!! Wedding days are known for being special, and I am biased because it was a family event, but this was truly magical and dreamlike, a Midsummer Night’s Dream. 
My guess is that most guests were feeling sun-deprived, so for that rarely seen ball of yellow light in the sky to shine, was the top layer on an already generously-iced cake. We British can be forgiven for mentioning the weather a few times and it was so surreal I felt I must share it with you.

The venue, a Queen-Anne style country house in the Surrey Hills called Barnett Hill, provided the perfect setting for what we wanted. It was winter when we (when I say ‘we’ this means our daughter, her now-husband, my husband and me) first visited the hotel, the gardens looking bare.

Tension slowly built up to the tune of violins and cello as we waited for the bridal party to enter; broken by the appearance of the chief bridesmaid (daughter) with 19 month-old flower girl (granddaughter) who stole everyone’s hearts; and eventually the arrival of the beautiful bride on the arm of her father who was in tears; the vows, the oohs, the aahs, the sighs and small chuckles …
The string quartet then continued outside on the terrace as we enjoyed canap├ęs and bubbly and the photographer unobtrusively took hundreds of pics. Now, out in the open air, the relief and release was palpable. In the loveliest summery surroundings you could wish for, we could breathe again and relax – it was happening, this was real, this was wonderful. The sun was bright and everyone was exceedingly happy, glasses clinking, eyes twinkling.

The speeches were funny and tender; there were good jokes and some so bad they were great, and many heartfelt expressions of love, thanks and gifts.

We overran but in a good way – we were all having such a good time, so the evening people happily mixed and mingled without us until we all came together.

With the flower-girl long since safely tucked up in her cot, and the cake ‘cut’, the bride and groom had their first dance and some serious partying began – dancing to a six piece band. But the layout of the hotel was such that various other rooms were available, to say nothing of the garden, for chatting, ambling and, making it all very personal, leafing through some amazing photo albums of the bride and groom.
Sunday allowed us an al fresco breakfast we had not even thought would be possible. By half-past nine we wondered if we could take the heat!


How lucky were we?  Had I read this in a romantic novel I would have decried it as totally unrealistic!


Wednesday, 5 June 2013

I Wrote it My Way - Bonnie Trachtenberg

It's time for another lovely author to visit Miriam's Ramblings! In fact this is long overdue, but with holidays and life in general, blogging has been swept aside in recent weeks.
Welcome Bonnie, from across the pond - I am really delighted to have you here in Appley Green land!

Bonnie Trachtenberg is the multi-award-winning, bestselling author of Wedlocked: A Novel and Neurotically Yours: A Novel. She writes a monthly relationship and advice column for Bonnie was senior writer and copy chief at Book-of-the-Month Club and has written seven children’s book adaptations. She has also written for three newspapers and penned countless magazine articles. She lives in New York with her husband, four cats, and a dog.
Bonnie explains her journey to writing her award-winning novels.
'I’ve always been a sucker for a good romantic comedy, whether through the books of Jennifer Weiner, Janet Evanovich, Marian Keyes and others, or at the movies watching “When Harry Met Sally,” “Something’s Got to Give,” or “Pretty Woman”. Let’s face it, real life can be sad, frustrating, and maddening at times, so I never seek out depressing or gut-wrenching stories no matter how good they are. I’m sure I’ve missed out on some great books and movies, but somehow I know I’m better off. Smiling is a priority for me. If I want misery I’ll turn on the news!
When I decided to pen my first novel, I realized I’d be spending many long days and nights holed up in the “alternate universe” I was creating. I also knew that if I was going to find my stay there a pleasurable experience, it had better be a romantic comedy! Luckily, since I was writing a story based on my first brief, disastrous marriage (Wedlocked), I had the perfect material. I never even gave the genre selection a second thought. Romantic comedy wasn’t just the right decision; in actuality, it really wasn’t a decision at all. It was completely organic. And as I developed my characters and wrote witty dialogue, I found myself giggling, swooning, and truly enjoying myself. Nothing is more entertaining to me than a good romance with lots of laughs, so for me, romantic comedy was a natural fit!'

We certainly do all need cheering up after following the news these days; although I don't write 'rom-coms' myself, I agree with Bonnie. Even in a reality novel, humour is vital to give the reader a lift and maybe provide an escape to a better place.
Thanks again!

Learn much more about Bonnie at her website:
Read her advice column at:
Find her on Facebook:
Follow her on Twitter: @Writebrainedny

Buy Wedlocked
Amazon UK:
Barnes & Noble:

Buy Neurotically Yours
Amazon UK:
Barnes and Noble:

Saturday, 4 May 2013

Amazing statistics!!

This is just a short, but astounding, follow-up to my post on Parkinson's Awareness Week.
Parkinson's UK thanked me for helping to spread awareness, which was really nice of them. Their marketing department also shared some astonishing statistics with me.
During the week, this is what happened on their website and so on. They had:

·       48,276 visits to their website

·       21,000 people engaged with them on Facebook

·       2,000 new likes on Facebook

·       More than 100 people shared pictures of their shoes on social media

·       Over 5,000 video views on Youtube

·       226 events nationwide
        Well done and many congratulations on this massive success!
       My book, Shades of Appley Green is not just about Parkinson's, by the way, but I do hope it helps people to see what it can be like to be elderly with Parkinson's. As someone pointed out in the comments left on my post some younger people sadly contend with the condition, too; then called 'young onset' Parkinson's, but my character, Jackson Jeffrys, celebrates his 90th birthday in the story. He lives an apparently affluent and comfortable lifestyle, but various health and personal circumstances have conspired against him. Loneliness is his greatest problem - and, hey! something can be done about that!
       Awareness and understanding go a long way towards encouraging those with Parkinson's to perhaps go for a walk, have a pub lunch, enjoy shopping or even join a choir. Being deprived of such simple pleasures can lead to depression and, with some people, can be worse than the physical symptoms.
       Next time you see someone who may have Parkinson's, please, please, remember this. I know you will. Of course you will.

Friday, 19 April 2013

World Book Night Comes to Appley Green!!

OK, so Appley Green is not real. I should know this!
World Book Night is real, however, and coming very close to Appley Green! Just to remind you, this is an initiative that involves authors, publishers, agents, booksellers, librarians and above all readers!  It is on Tuesday 23 April - wow! four days away, as I write this.

On their website they say, ‘World Book Night is a celebration of reading and books which sees tens of thousands of passionate volunteers gift specially chosen and printed WBN books in their communities to share their love of reading.’  I am one such volunteer, full of passion, needless to say; so on Tuesday I shall be giving away 20 brand new special editions of my first choice from the list of books offered by World Book Night. It was difficult to choose from a wonderful selection, but I was delighted to be allocated my top choice, a novel called The Road Home by Rose Tremain.

Of course, this book is just ‘up my street’ and please forgive the pun if you can find it in your heart; about an Eastern European immigrant’s struggle to make his way (yes it’s a ‘journey’) in London. It offers a new perspective of ourselves and I love this book. I really hope I transmit my enthusiasm to others and do it justice.

A snippet from the WBN website, declaring that reading can go beyond pleasure:

 Reading changes lives, improves employability, social interaction, enfranchisement and can have an effect on mental health and happiness.’ 

I could not put it better myself, nor agree more!

Next week I will tell you about where I am going – or rather where I went!  With pictures! I wonder who I will meet? Aren't you excited? Of course you are!

Book givers are charged with the mission to approach people who perhaps do not read books regularly. I say ‘perhaps’ for how can you possibly tell before speaking to someone! (unless you catch them at it - reading, that is.) What does a non-reading person look like? What would be their identifying features? Tell me!

It's 'horses for courses' as they say and some could not live without Grand Prix races or playing Bridge; but I genuinely cannot imagine living without books. They are, and always have been, such an important part of my life; now in retirement, even more so. I do what used to be called ‘Books on Wheels’ rebranded as ‘Library Direct Home Service’ that I consistently fail to remember; the words just keep re-arranging themselves in a different order, but I guess I need to stare at the title a little longer to fix it. I belong to a book club. I have kept a list of books read over the past ten years or so, with a brief comment about each one. I recommend this to booklovers! As the years roll by it is quite enlightening to look back and see what you have read and whether you enjoyed it and, if so, why. Now, I sometimes pop a little review up on Goodreads, go to Book Festivals, and, of course,  try to find time to write books too, the greatest joy of all.

World Book Night, The Company
‘Each year we recruit 20,000 volunteers to hand out 20 copies of their favourite book from our list to members of their community who don’t regularly read. By enlisting thousands of passionate book lovers around the country World Book Night reaches out to the millions of people in the UK who have yet to fall in love with reading in the hope that we can start them on their reading journey. In addition World Book Night distributes half a million books directly to the hardest to reach potential readers in prisons, care homes, hospitals, sheltered, supported and social housing, the homeless and through partner charities working throughout the UK. World Book Night is about giving books and encouraging reading in those who don’t regularly do so. But it is also about more than that: it’s about people, communities and connections, about reaching out to others and touching lives in the simplest of ways, through the sharing of stories.’
Let me know of any good World Book Night (WBN) events down your way!
Added after the event - here in Deepcut Village Hall
See how they clutch their books!!

Sunday, 14 April 2013

‘Put yourself in my shoes’ - Parkinson’s Awareness Week

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