Living with young onset Parkinson's
Musings on life with young onset Parkinson’s Disease
Time for a change
World Parkinson Congress, Barcelona 4-7 July 2023
Friday 7 July 2023
Four years ago, I wrote about how attending the World Parkinson Congress in Kyoto, Japan, changed my life.
This week I was in Barcelona at the sixth instalment of this event. Of course it was never going to be as significant for me personally as Kyoto, but it was an amazing week nevertheless. I am writing this on the way home, feeling both exhausted and energised at the same time.
Like Kyoto, the event was spread over four days. It had around 2,500 participants from over 70 countries: a mixture of medics and researchers of all levels from students to world leaders in their fields, and people personally affected by Parkinson’s either as a PWP or a care partner. There was the same fascinating mix of cutting edge, highly technical science, presentations and round table discussions aimed at people living with the condition, and all sorts of side attractions like companies showcasing innovative technologies, an art show, various award ceremonies, a book stand, a comedy show, a cinema room, exercise classes, and so on. I took quite a few videos, many of which will appear in the coming weeks on the YouTube channel on which I do a lot of hosting. Needless to say, I spoke to a lot of people and learned a lot this week.
I saw four themes
coming out of the event.
1. Basic science: we are getting there – slowly
Have we made progress since the last congress four years ago? The short answer is yes, but slowly. From a scientific perspective the topics were pretty much the same: proteinopathies, genetics, lysosomal dysfunction, neuroinflammation etc., and there didn’t seem to be a big new idea. However, some ideas have developed further, like the brain first, body first theory that Parkinson’s can start either in the gut or the brain; this hypothesis seems to be gaining a lot of support. The impression I get is that the pieces of the jigsaw are mostly in front of us, but we still need to assemble them in the right way. There is undoubtedly progress, but it feels quite slow.
2. Diet and nutrition are important
There have long been PWPs who swear by certain diets or food supplements, but the scientific community has largely ignored them as they are each one off cases. There is a growing realisation that there is actually some substance to dietary factors, and there is starting to be more rigorous investigation of impact of what we eat. For instance, dairy is thought to bad for PWPs, possibly because it interferes with the uptake of levodopa. There is more to come on this topic and I’ll write a blog post on it sometime.
3. There is lots of technology innovation
I’ve seen prototypes before of innovative technologies to help with certain problems in Parkinson’s, but these are now evolving into usable products. A example is a glove with a gyroscope attached that cancels out the tremor, enabling PWPs with sever tremor to write again. The device sounds – and looks – obscure but it does actually seem to work.
4. We will probably have some new therapies in the next 2-3 years
We’ve heard this one many times but now I think it’s actually true. There are a number of promising drugs that may have a disease modifying effect in phase 3 clinical trials. I think one or two of these will come good. Importantly, there are also a range of other therapies making progress that promise symptomatic relief, including cell replacement (which I have written about previously) and focussed ultrasound.
From a personal perspective, I took away two additional things:
- I know a lot of people in the Parkinson’s world.
I was surprised at how many people I already knew in the Parky world, a list which got added to as the week progressed. First and foremost some of my local Parky buddies that were there, plus Parkies I know from the South London Younger Parkinson’s network. Then it was great to finally meet my YouTube co-hosts face to face; they were full of intoxicating energy and enthusiasm. There were several academic groups and charities that I’m involved with where I got to meet both familiar and new faces: The Michael J. Fox Foundation, Critical Path for Parkinson’s, Accelerating Clinical Trials in Parkinson’s, Cure Parkinson’s and Parkinson’s UK. And I even got to chat to Rachel, my neurologist, though sadly The Professor wasn’t there. I plucked up the courage to ask a few questions in some of the large plenary sessions (with probably 500+ people in the room) so perhaps a few other people now know my name as well.
- I can do useful research.
I presented a poster based on the results of my MSc project from last year at one of the two poster sessions. As the name implies, this involves making a large poster which you pin up on a board, that people then come and look at and ask questions about. My poster was deliberately provocatively titled: “Parkinson’s: one disease or several? The fallacy of subtypes.” There is a lot of talk about different subtypes of Parkinson’s in the academic community but my own research suggested that this is misleading. You can put PWPs into groups based on their symptoms, but wait ten years or more and those groups become indistinguishable. I was worried (a) that nobody would look at it or worse (b) that people would think it was rubbish. But then two leading professors, one from Canada and the other from the UK, agreed with me. So perhaps there is a future for me doing proper science after all…
Overall, I came away
feeling very positive and re-energised, both about the future for Parkinson’s
research and my own ability to make a meaningful contribution.
It will be interesting to see what the status is of both of these things at the next World Parkinson Congress in 2026, by which time I will have been living with Parkinson’s for a decade…
Life in slow motion
Saturday 27 May 2023
My mother and I shuffle slowly along the trails through the woods at the back of her house. Our time together is precious and yet I don’t mind that we spend it in this way. In fact, I can think of few places I’d rather be than arm in arm with my mother in the English countryside surrounded by the glorious full bloom of a sunny day in May.
The slow pace allows me to tune into nature and gives me time to appreciate the beauty around me: the vibrant green of the beech and silver birch trees in their explosive growth phase; buttercups, daisies and bluebells lining the path. Bursts of brilliant white cowslip everywhere. I listen to the soft festination of my mother’s feet against a backdrop of melodic birdsong. Dappled sunlight adds a constant change of view as we meander along the path hardened by the recent clement weather. The only downside is that I haven’t been able to smell any of it for over six years, though my mother can still enjoy the aroma of Spring: the difference in our olfaction is one of the many mysteries of how Parkinson’s affects everyone differently.
53 years ago, my mother became a devoted, selfless parent. She nurtured me through my baby years, my first words, my first steps, my primary school years, and my teens, before finally stepping back and watching from a distance as I set sail on my own voyage. Now that odyssey has come full circle and I find myself playing the parent. When I do my monthly visit, a 7-hour round trip from my home in South East London, I cook lunch for her, take her for a walk, and occasionally do a couple of small errands around the house. We spend a few hours playing Scrabble or doing the cryptic crossword in the local paper together, chat a little about our Parkinson's, and of course I give her a back massage.
She is desperately frail, her body contorted and atrophied. She sleeps much of the time and needs frequent rests. But her eyes still sparkle with humour and grace, and she is still just about able to get out for a short walk every day.
All too soon, it is time to leave and I reluctantly head out to the taxi waiting for me at the end of the road. We embrace. She clutches my tightly. and tells me she will be lonely when I’m gone. I assure her I will be back soon and that one of my siblings will also be with her before long.
As I speed south on the train writing this blog post, I am filled with happiness at a day well spent. I already looking forward to coming back again next month. But there is also a tinge of poignancy. I don’t know when it will happen. It may still be several years away. I may not even realise it at the time. One time when I do this trip, it will be the for the last time.
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