In my last post, I talked about the value of being with others who have similar experience that we can connect to. I also spoke about a conference my husband and I attended in Rotorua a couple of years ago. It was shortly after I was diagnosed and while I had some hesitation about going, it turned out to be a wonderfully worthwhile experience. However, there is something that I think would have made it an even better conference for those who attended. Before I get to my suggestion, I’d like to compare the conference with one I attended quite a few years ago now.
When I was working with people with Dementia, I attended a conference for people with Dementia and their carers. I even presented something myself, to a small group of attendees, in which I spoke about a support group that I had been part of trialing for Alzheimer’s Canterbury. As with any conference, there were a number of presenters during the two days of the conference. All of them were valuable, but one session was particularly powerful. That session was one in which a panel of people with Dementia and those in a caring role, answered questions from the floor about how they managed their condition and any advice they could give to others in the early stages.
I found this to be the session that influenced me the most and stayed with me longer than any of the ‘experts’ who had presented. As with my last post, the reason this particular session was so special, was that it gave people with Dementia a voice. Often, we are referred to experts to support and inform us when we have been newly diagnosed. Their input is certainly valuable, but there is nothing quite like learning from someone’s lived experience. I know the ‘experts’ have spent many years gaining knowledge and skills to help and support people whether it be those with Dementia or other conditions. However, all the study and research in the world, cannot give them the immersive experience you have when you are actually someone with the condition. Or, for that matter, someone who is in a caring/supporting role.
We Parkies People are the true experts of our experience. We know the subtleties of how our medications affect us. We know the challenges we face with exercise and balancing that with fatigue and other issues our bodies may present that can influence our ability to exercise. As individuals, we have our own individual experiences and none of us is affected in exactly the same way. Our bodies react differently, and many factors influence how our journey with this condition goes. No amount of testing, talking and examining us will be able to make anyone under the guise of ‘expertise’ really understand how we are as Parkies People.
I am currently trying to find out whether there is going to be another National Conference for people with Parkinson’s. I have been in contact with Parkinson’s New Zealand and asked if they have any plans to hold another conference and if so, when that will be. I have given them feedback about the last conference, which – as I have said – I found to be an excellent opportunity for learning. However, I think what was missing was the voice of the people. People like you and me, people either directly living with Parkinson’s or those supporting us. I know that the General Manager of Parkinson’s New Zealand has Parkinson’s and he spoke a little bit about that, but his main focus was as the GM.
I would like to see people like us being given the opportunity to be involved as a presenter, so that we can speak about our personal experiences. If we are able to – in sharing those experiences – give others tools and ideas on how they can manage their own Parkinson’s, I think that would be incredibly valuable.
Hopefully, there will be another conference soon and perhaps I will even get to meet some of you who follow my Blog. I would love to hear the stories of others and the wisdom they have gained through living this life. Hopefully, the next conference will enable us all to hear from others who – like us – are directly affected by this condition. I absolutely acknowledge that the professionals continue to support and advise us, but that they are not the only ones that can do so.
I firmly believe that we the Parkies People are the true experts!
My journey with Parkinsons 