This weekend I attended my first Parkinson’s Conference in Rotorua. The UPBEAT Conference for people Under 65 years and their partners/support people. It was, just as the name suggests, an upbeat and positive experience meeting with people who are also on this journey and learning about their challenges and how they continue to live their lives.
The variety of speakers was great, but I did find that the level of information at times overwhelmed me and I was quite fatigued. However, there was a lot of useful information imparted and both my husband and I got a lot from the experience.
A number of things occurred to me this weekend. Firstly, how lucky I am to have such an involved, caring and compassionate husband. I wish everyone undergoing such a journey had the type of support that I am fortunate to enjoy. To be there alone would still have had value, but the ability to debrief after sessions and compare notes on what we had experienced added to the positive impact the Conference had for me. It is hugely important to me that he finds support as we travel on this road together. Unlike other ‘trips’ this is not one we would have chosen, but nevertheless is one where we both need to be equipped to travel.
Secondly, I was struck by how open and honest participants were – both those with Parkies and their supporters – sharing their experiences with each other and in many ways feeling accepted and acknowledged.
I am very early on in this journey and I was struck by how positive and engaged in life the people I met were. How people shared their stories and shared their strategies, how we encouraged each other and spoke about our supports both formal and informal. I came away with a notebook full of notes and a head full of ideas to share with my own Parkies group when I get home.
Lastly, we had a session of ‘Spin poi’ with a youthful and enthusiastic presenter. Perhaps it was growing up in Rotorua and the cultural aspect of poi that appealed, but I thoroughly enjoyed this session. I even got up early on the Saturday morning to go to a Spin Poi exercise session. Another group session that would have been unheard of pre-parkies!! I can’t say I was exactly expert, but the session was well attended and fun and something I will incorporate into my exercise routine. I will certainly recommend it to my fellow parkies people when we meet at our next Peer Support group.
I am finding that life is full of surprises since I became a person affected by Parkies. Surprisingly, many of them are extremely positive and have given much to be grateful for:
- I am fortunate to have a loving, supportive relationship, which if anything has grown stronger since my diagnosis.
- I am more open to group experiences and the richness they bring.
- I am more open about my thoughts and feelings and willing to share with others things that help me.
- The ‘experts’ that help me the most are those who I meet with Parkies, who have travelled this road longer and have had the generosity to share what they have learned along the way.
- I will ask for help more readily now – and see this as a strength – rather than waiting for life to overwhelm me.
- I am better at looking after me.
I am home now and as I reflect on the experiences of the Conference, I know that when the next one comes up in two years time, I will be amongst the first to enrol and join my fellow Parkies people in a forum that will enrich my life with it’s experience.
My journey with Parkinsons 