I have been going to a Peer Support Group for about 5 years now. We meet once a month at a local club for a drink, dinner and a chat. Sometimes we share about our Parkinson’s, but often we connect over talking about holidays or work or any number of things that a gathering such as ours might be expected to talk about.
The thing with meeting in a pub/club setting is that there are often groups of people all together and it is difficult for anyone looking for our group to pick us out from the crowd. To make it easier for newbies to find us, one of our members has made this little mascot that sits on our table, so that people can find us if they wish to and know they have the right group. So, he comes to every meeting, but he hasn’t really earned his keep yet! So, I had a few things to say about our little friend. Firstly, he has never had a name. We just don’t seem to be able to have the time to think of a name for him and so he is just the “upbeat mascot”. As we live in New Zealand, he is a little kiwi and so I started to try to think of an appropriate name for him. At this stage, not having had the chance to ask for suggestions, I thought we could try “Wiki” for a name. In Maori the name Wiki has a couple of meanings, but the one that I like that has a good meaning is “Water Ripples: A verb meaning to form circular ripples on the surface of water ” It is also an anagram of Kiwi.
In Social Work circles we often talk about the client/patient as being at the centre and that everything that happens to them affects those around them to varying degrees. Those closest to the centre are the ones with the strongest link to the person, but in each ring there are others affected. Friends, workmates, relatives, they are all likely to be affected to a lesser or greater degree by the client/patient’s health issues.
So for now, I will refer to him as “Wiki” until I am told a different name has been chosen. The other day at bowls I took Wiki for a visit – I will explain why in a minute or two. A woman on the other team asked who my little friend was and why I was taking photos of him. I told her that he was our mascot for our Parkinson’s meetings and I was getting him out and about to raise awareness. She expressed surprise when I said that I have Parkinson’s Disease and for her there were no obvious signs. She went on to ask about my symptoms. It was difficult to pick out any symptoms because a lot of symptoms such as tremors are not very prevalent at the moment as meds keep them under control. Cognitive affects would take more time to explain and probably not something I would want to express in such a setting. One of the possible issues with Parkinson’s is that it is – in the early stages – an invisible disease/condition. Tremors can be managed with medications as long as they are taken on time. Cognitive issues like memory problems can be difficult to detect if you don’t really know the person well. Anxiety and slowed processing are also things that you might not detect in a short interaction. So, in many ways Parkinson’s is a hidden disease and that can make it difficult to understand the challenges we face.
Certainly, the public perception in the main is that people with Parkinson’s shuffle, fall and have speech issues and many of the seemingly hundreds of symptoms that come with the condition. So, I thought I would use Wiki to depict how able, active and busy the life of someone with Parkinson’s can be. This week so far, Wiki has been to bowls, he has helped me in the kitchen baking, he has sat with me when we have had a cuppa after bowls and he has sat with me as I write my blog.
I thought for the next month, I would take photos of him at my various activities as a way of illustrating what I as a person with Parkinson’s can still do and enjoy. That I can still travel, play bowls, play Rummikub and swim, to name a few. I thought it would be a fun way to illustrate what is possible and how much there is still to enjoy despite this despicable disease/condition.
I wonder what other outings and adventures Wiki might get up to this month…
My journey with Parkinsons 