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…
