Our journey to a viable product began with a wonderful lady named Ruth and an invite to a coffee morning. It was at this coffee morning at the beginning of 2019 that we met a number of people with Parkinson’s who were to go on to give kindly and generously of their time and energy.
Ruth Brinkler-Long is chair of Parkinson’s UK Peterborough and District Branch, as well as Editor of their monthly newsletter ‘The Shaker’. She joined her local Parkinson’s UK group after suspicions of a trapped nerve led to a shock diagnosis of Parkinson’s in 2014. With the skills and experience gained from her impressive retail career at John Lewis, alongside her genuine compassion and desire to bring joy to group members, it was not long before before she was voted in as Vice Chair and then as Chairman in 2017. Ruth’s formidable energy and organisational skills are evident in the wealth of member activities, awareness events and fundraising ventures the group currently offer.
She kindly took time out of her busy schedule to sit down with us and discuss some of the common challenges faced by those living with Parkinson’s.
Cards and Queues
Ruth is a calm yet compassionate lady, with a heartfelt drive and positive attitude towards helping people who are suffering with the symptoms of Parkinson’s. She talks animatedly and with empathy as she describes the situations they regularly face.
From the anecdotes she shares, it is clear that one of the hardest things to deal with is time pressure. She recounts the stories of people who have found themselves struggling to get cards out of their wallets - often with the added pressure of a queue building behind them. She describes how the situation is already difficult for someone who is consciously making an effort to control their movement - and how it is compounded by fellow shoppers ‘tutting’ in the background.
Ruth is a serious and earnest interviewee, making her points without judgement or emotive language; yet as she describes how some people are not even given the chance to explain their symptoms, even she can’t hold back a head shake. The subtlety of the gesture lends more weight to the frustration evident in her face.
Too Little, Too Late
Her compassion is never more evident than when she is describing the occasion a Parkinson’s sufferer boarded a bus with a particularly intolerant bus driver. The passenger was unsteady on his feet and struggling with limb control and was accused of being drunk. Unfortunately the driver treated him accordingly and later apologised for the incident.
Ruth explains how others have recounted stories of walking down the street, only to be stared at; or for it to be assumed that they are drunk or in other ways incapacitated. She is obviously saddened by the lack of awareness and understanding whilst out in public, and one can see where her drive to educate and raise awareness comes from.
Each of these scenarios features the same challenging cycle of anxiety, stress, triggers and anxiety. In a situation that is already physically difficult, to be faced with judgement and derision is heart-breaking. Ruth goes on to explain that while in some cases the behaviour may be followed by an apology, it is usually too late. Too late, in that the damage is already done. The person with Parkinson’s has already lived through that experience, suffered the emotional turmoil and physical consequences of increased stress and been affected accordingly.
Patience, not Pity Please
Ruth’s symptoms are not visible. There is nothing overt to tell an observer that this is a person dealing with the challenges of Parkinson’s. Unbeknown to most, common symptoms are in fact stiffness and sluggish movement - unnoticeable, perhaps, unless you are watching for it. These are also outward signs that can easily be misinterpreted. Ruth herself appears to have great control over any physical symptoms she may have. Only the occasional posture adjustment gives any indication that she could be in discomfort, when she does, in fact, cope with pain in her shoulder, which affects the whole of the right side of her body. Her hands, also, give away nothing; although the very stillness and straightness with which she bears herself are perhaps a clue to how much effort is actually involved in maintaining her composure. She explains how she manages six doses of medication per day, and that she plans her day and her diary around these times to make the most of the effect before it wears off.
Her overwhelming message is to be aware. Do not judge or assume - and be kind. There are so many ailments that most of us have no knowledge of that it is a dangerous thing to assume you know why someone is behaving the way they are.
There is a point in our chat when Ruth is explaining that one of her own triggers is crowds. The lack of space, the hustle and bustle, all contribute to an overwhelming situation where you are physically jostled and can struggle to maintain control. She describes how she ‘used to’ go to the supermarket early in the day to avoid the crowds and queues, “but now sadly…” There is barely a pause as she quickly moves on. It is only on reflection one realises that she may mean she can’t even manage the early visits now.
There is no complaint from Ruth, no self-pity. In fact, it is one of the rare occasions we see her grinning! Her whole face lights up as her next sentence brings a positive note to even this revelation: “My husband’s really pleased because I don’t go shopping as much!”
Thank you Ruth for sharing your story.
Author : Victoria Duggan