Age diagnosed: 45
Specialist interest: Exercise, research, supporting newly diagnosed
I have been asked by many people why I would travel so far to go to this congress. It’s partly about the science but for me, it’s also about the opportunity to connect with others living with Parkinson’s, to connect with researchers, health care professionals and people from all over the world, from all walks of life who are interested in or affected by Parkinson’s in some way. I am grateful to be part of a community that works so hard and so cohesively to improve the lives of those of us living with Parkinson’s whilst striving to find a cure.
And so I made the journey from Cheltenham to Kyoto, 5910 miles, on my own, without getting lost once! Arriving, with time to get over the jet lag before the conference starts meant that I had today to explore the wonderful sights that Kyoto has to offer. As a keen cyclist there’s only one way to do that………. Together, with Paul, another young person living with Parkinson’s who’s also a keen cyclist, we covered a few miles around the city on surprisingly quiet roads, amidst beautiful scenery and warm sunshine. The perfect antidote to jet lag!
This evening, the streets of Kyoto are bustling and for those of us living with Parkinson’s it’s easy to spot others here for the same conference. The visible symptoms of Parkinson’s transcend any language barrier. I came to Kyoto to learn and to connect with others living with Parkinson’s. These connections have already begun – a small nod, a handshake, a smile, an understanding. Parkinson’s looks the same in any language and any culture but how we deal with it may differ enormously and I’m keen to learn more over the next few days….
Day Three: Opening Day – WPC 2019
Today was incredible in many ways but incredibly emotional too. Despite living with the degenerative, progressive nature of Parkinson’s for the past four years, I still find it hard to be immersed into an environment where the devastating nature of the disease is so evident.
A pre-conress session on activism, advocacy and the roles patients play in raising awareness, therefore struck a chord with me. How to dispel the myths and misconceptions about the impact of living with Parkinson’s and the role that each of us can play in doing this was deeply thought provoking and emotionally charged and I will reflect on this in the weeks ahead.
The ceremony opened with a beautiful, inspiring and deeply moving speech by Lyndsey Isaacs about her life with Tom, for which she received a standing ovation. I feel blessed to have known Tom, albeit briefly and knowing Lyndsey too, this was an incredibly emotional part of the day.
I came to Kyoto to the World Parkinson’s Congress, to learn and to connect with others living with Parkinson’s. I hadn’t expected to be so connected to so many amazing people, quite so quickly. With 2,600 delegates from 65 countries there are endless opportunities to meet others and I’m determined to make the most of this opportunity.
You could be mistaken for thinking, that following such an emotional start to the congress, I’d had a thoroughly miserable time. I was in fact inspired and uplifted by the people I have met, their stories, and the sense of community, support and hope that is evident throughout the congress. I feel privileged to be part of such an amazing event.
Today was an early start after a bad night’s sleep. I need not have worried; when I could no longer keep my eyes open, I ventured to the Quiet Room, lay down on a comfortable futon and slept soundly for 40 minutes. The WPC planning committee got this idea spot on – there was clearly a need for it as people were queuing to use the facility as I left.
This morning’s presentations on Alpha Synuclein certainly challenged the mind but were interesting and an important part of our learning.
The World Café was another opportunity to meet others, share experiences and contemplate the ‘Patient Dialogue’. A great session.
I had a wonderful 20 minute massage mid morning, which was a real treat – another thoughtful and welcome offering from the WPC. I was tempted by the table tennis but will reserve that for another day…
The highlight of the day, however was Laurie Mischley’s presentation of nutrition and Parkinson’s. Her common sense, straight forward approach to nutritional health was refreshing and oh so practical. I have a list of 8-10 components I’m going to change about my diet over the next couple of months.
Supper this evening was in a local bar with a couple from British Columbia. A lovely evening, laughing, joking and sharing our personal stories, offering each other support and undoubtedly a longer term friendship.
An exhausting but wonderfully uplifting day. What an amazing community to be part of.
Interesting start to the day hearing about research trials, the genetics of PD and living with a gene for PD.
My day then took an unexpected turn when I came across one of the UK travelers who was having an ‘off period’ and had literally frozen to the spot. Having tracked down a wheelchair, I spent the rest of the day supporting him while his drugs kicked in and out and he either moved too much or not at all. There was no happy medium for him today. A very long flight, altered medication timings, different diet, long days and excessive heat were proving too much. The devastating effects of advancing PD are evident everywhere at the conference and the need for more effective treatments to slow, stop or reverse the disease have never been more evident.
Some great dialogues are happening though between researchers, patients and caregivers which will hopefully enhance the collaboration already underway between worldwide organisations.
The commitment, expertise and energy to find a cure is incredibly uplifting.
‘Take one day at a time, be kind to yourself and do something fun every day’ a friend advised when I was diagnosed with Parkinson’s Disease. I have lived by that mantra ever since, exercising, setting myself challenges, spending quality time with family and friends and travelling. Of course I would never have chosen to have Parkinson’s Disease but I have chosen to be an active part of the Parkinson’s community after meeting so many amazing and inspirational people, supporting each other, each making a difference in their own way and collectively striving to find a cure.
I play tennis, box three times a week, practice yoga and cycle. In 2017, I cycled 500km through Vietnam and Cambodia to raise funds for research, to show that it is possible, to give me an exercise goal to focus on and to raise awareness of Young Onset Parkinson’s Disease.
In 2018, I cycled over 1,000 miles from Land’s End to John O’Groats and am now turning my thoughts to the next challenge!
When I’m not exercising or planning a challenge, I raise awareness of the challenges of living with Young Onset Parkinson’s Disease and the benefits of exercise by speaking at a variety of meetings for health care professionals and others.
I am growing a young person’s network in Gloucestershire and offer support and buddying to those newly diagnosed with Young Onset Parkinson’s Disease.
I volunteer for the Parkinson’s UK local development team, identifying and addressing gaps in services in terms of activities and support for people with Parkinson’s Disease.
I am actively involved in research, taking part in a number of projects.
Land’s End to John O’Groats (LEJOG) Blog: https://lejog.blog