Understanding can be fleeting or non-existent…

I am on a Facebook page called Australia and NZ Parkinson’s Support and Chat group. It is a valuable resource for people with Parkinson’s and their carers/supporters/whanau. I saw this today and thought it would be a good thing for someone to make for those of us in New Zealand.

It got me thinking though. When first diagnosed I had lots of people expressing their sympathy at my diagnosis. I explained things like sometimes I have a thing I refer to as a ‘mental stutter’ where I start to say something and then it’s like my thoughts have a barrier in front of them and they grind to a halt. I also explained that when I am put under pressure I can get really stressed and this makes it hard for me to think. In my job that is a bit of a disadvantage, being a Social Worker. I also said that I get tired more easily and at times have ‘the shakes’.

At the beginning people seemed to take this on board. However, because I am well controlled by medications I have little or no tremors most of the time. This is the symptom that most people recognise. I have noticed that people have forgotten the other symptoms I have mentioned. This means that when I start to tell a story and get stuck I can see the look on their face – it seems – that I have lost the plot! The same goes with putting me under pressure. No-one seems to remember that bit either.

I have had patients with a brain injury judged for slurring their words and walking with an ‘ataxic’ gait or staggering gait. It is challenge enough living with and managing this condition without having to explain ourselves lest we be judged!

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

2 thoughts on “Understanding can be fleeting or non-existent…

  1. Thanks Sue. This reminds me of a family member with Parkinsons, now deceased. There was very little understanding of, or messaging about, Parkinsons in his early diagnosis. The whole extended family shared his journey. The more you know and understand the better it is for everyone.
    I particularly remember the mid sentence stops.

    Like

  2. It seems that people quickly forget that a person is dealing with a significant health diagnosis that affects not just them but their family also. Lots of sympathy often when first diagnosed, but people get on with their lives and the PWP and their family can be left feeling unsupported and alone.

    Like

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