!*?*@

It had been a long day. It was early evening and I was rushing for a train to take me home from Sheffield where I had been presenting the ‘patient perspective’ at a conference for healthcare professionals working with people with Parkinson’s.

Balance, gait and visual-spacial awareness can all present problems for people with Parkinson’s. For many people living with the condition, these problems become the norm and we adjust our daily lives in order to deal with them as best we can. As with many of the symptoms of Parkinson’s, they are largely hidden from view and therefore unseen by others. They are worse when our medication is wearing off. They are also worse when under any kind of stress and today, time pressure was one of those stresses.

I was trying hard to keep my balance and avoid tripping as I hurried as best I could down the stairs to the platform where my train was waiting. There were lots of people hurriedly ascending and descending the stairs with little regard for the arrows indicating the desired flow of commuters.

A woman, heading up the stairs, as I was heading down, stopped in front of me. She was heavily pregnant. ‘Been there, done that’ I thought sympathetically as my slightly wonky brain tried to signal to my rigid facial muscles that they should smile and portray my sympathy. Trying its best to multi task, (never easy even when fully medicated but something of a challenge when it is wearing off) my slightly wonky brain also tried to persuade my reluctant feet to move to one side to let this woman past.

As is characteristic of Parkinson’s, my movements are slow at the best of times. Sometimes they can pass for the slower end of ‘normal’ today they were hovering around the slower end of slow. Despite being slow, I was smiling, conveying a warmth, friendliness and empathy (or so I thought) towards this fellow commuter. Of course, I was trying to move out of her way. My default position is invariably set to ‘courteous and kind’, it was just taking me a little longer than might be usually be expected.

It is entirely possible that the ‘smile please’ message from my brain never made to my facial muscles or maybe these muscles were just slow in responding. If they were showing any indication of a smile, it was wiped off my face as the woman screamed ‘SELFISH TW*T’ at me loud enough for anyone on the stairwell, the platform and possibly even the train to hear as she shoved her way past me. Apparently her default position was not set to the same ‘courteous and kind’ position as mine.

Mortified and embarrassed, I made it to my train with seconds to spare. Sitting down, medicating and trying to relax, I reflected on what had just happened:

  1. How much we rely on non verbal cues to portray information about how we are feeling, our intentions and our mood and how these cannot be relied upon with any degree of accuracy for many of us living with Parkinson’s.
  2. The challenges and consequences presented by symptoms not always obvious to others.
  3. The readiness of a complete stranger to assume the worst in someone else even in the very briefest of encounters.
  4. The possibility that this woman also had her own struggles, that were not necessarily visible to others.
  5. That some people appear to have a default position that most of us would consider unreasonable, ignorant and offensive.

PS Mum, don’t worry, I was brought up to know that this outburst was not worthy of a response, or at the very least was not worth missing my train for and that this woman’s outburst said much more about her than it did about me.

Images Source: ClipArt Library

3 thoughts on “!*?*@”

  1. I am really sorry that you had to have that experience – unfortunately some people have little concern for others or awareness that a person may have their own problems. I learnt many years ago to think before I react because you never know what that person is going through – illness, bereavement etc – sadly perhaps that comes with experience.
    I have noticed recently that, for example, when I am trying to explain a problem, my words do not follow my brain and, to others it appears I am talking gobbledygook, so have to take a deep breath and try again. This is a real issue when dealing with call centres which are largely overseas. Perhaps I should start my conversations with “I have Parkinsons so please give me some leeway”. What do you think?
    Keep up the good work with the blog. Your posts are always interesting and its great to read how you cope with problems we are all having.
    Best wishes
    Les

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    1. Thank you for sharing your experience, Les. I think an explanation of some kind can sometimes be really helpful but I find people’s understanding of Parkinson’s and its impact varies hugely, so I try to be specific for example, ‘please bear with me, I have Parkinson’s and this can make my movements slow at times’ or ‘I have Parkinson’s which can make it difficult to get my words out at times.’ I’m still learning though! Best wishes

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