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!