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


  1. I've not had direct experience of Parkinson's, Miriam, but having cared for someone with Alzheimer’s, I am very aware of how lack of understanding can make situations so much more painful. Great post. Best of luck! :) xx

  2. Thank you Sheryl. My mother had Alzheimer's and my son is running the Marathon on Sunday to raise money for research. Parkinson's is quite different though - often the sufferer is mentally A1, but communication between brain and muscles breaks down due to lack of dopamine. I really appreciate your comment - thanks again :-)

  3. My mum has parkinsons she was diagnosed about 3 years ago it has come as a huge shock to all of us how much and how quickly this has changed her, my mum was always smiling and was so outgoing, loved her job and was always happy to help and give her time to others. Parkinsons has taken all that from her, she tries to stay positive and never complains but it breaks my heart to watch my mum struggle and miss seeing her smile. I worry about whats to come in the future as unfortunately her medication does not seem to help her. Help raise awareness and find a cure for this horrible disease.

  4. Kathryn - thank you so much for leaving your story here and I am sorry to hear about your Mum. Staying positive is so important and it is quite amazing how brave people with Parkinson's can be. I hope she has a consultant or specialist nurse with whom she can discuss her medication - I seem to remember that it can take a while to try out levels of medication before finding the optimum one. As for the missing smile, please do remember that often there is a big smile inside! It can be more difficult to make it show! Best wishes to your Mum and to you.

  5. It is particularly shocking that Parkinson's is seen as an older persons disease and yet so many younger people are struck down with it too. Let's hope a cure is found soon - for the good of all. A very interesting and thought provoking post, Miriam.