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I started writing about the research being conducted in Parkinson’s in 2014.
If I’m honest, it was simply an experiment. Having failed to write the next great kiwi novel (think Katherine Mansfield, Margaret Mahy, Witi Ihimaera, Eleanor Catton, and most recently Rose Carlyle), to distract myself I started playing around with science writing to see if I liked it.
And what do ye know: I did
One thing led to another… and now there’s 500 posts on this thing called “The Science of Parkinson’s” (Click here for the full list).
In today’s post, we will revisit some of the key moments and thoughts on that journey.
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MOMENT OF CONCEPTION
The Science of Parkinson’s began life in the clinic room in the photo above.
It is clinic room 1 at the Brain Repair Centre at the University of Cambridge.
Back in 2014, yours truly had been working as a postdoctoral research scientist in Prof Roger Barker‘s lab, and (this will sound cliché, but) after almost 15 years of researching the biology of the Parkinson’s, I realised that I didn’t have much practical experience with the disease itself. Kind of like a taxi driver who thinks he has memorised all the roads, but has never actually climbed behind the wheel and interacted with a stranger wanting to be driven somewhere.
So I volunteered to help out in the clinic once or twice a week, doing some of the cognitive assessments.
It was straight forward work – leading folks through the various standardised tests – but the experience was extremely enlightening. Not just because one saw the heterogeneity of cases and the impact that the condition has on a human body (over time, with periodic visits), but also the human side of the whole beastly thing. You met and got to know the people affected and their families. You learnt their stories and listened to their lived experience of PD. It was a fascinating experience – one which further energized my efforts in the lab.
Everything had been going smoothly for about 8-9 months…
And then Martin Taylor walked in.
‘Positive realism’ – Martin Taylor. Source: tmrwedition
Husband, father of two, patriotic Scot, and die-hard Hearts supporter (the poor fool).
Martin had been diagnosed with young onset Parkinson’s (YOPD) at 32 years of age in December 2014. He was not the first individual with YOPD that I had ever met, but he was certainly one of the more well informed.
Faced with a daunting diagnosis, Martin could have chosen to rest on his laurels, but instead he has become a very active and inspirational member of the Parkinson’s community – getting involved with the very dynamic Edinburgh Parkinson’s Research Interest Group, and in 2017 starting the Facebook Parkinson’s Research Interest Group (or PRIG) which now has 3000+ members.
Martin also keeps a blog – Granderouge (it’s good stuff – you should check it out).
During life before Martin’s visit to clinic room 1, I had been experimenting a little with science writing. Sitting in the clinic with patients, I had become increasingly concerned by the vast chasm that lay between the headline summaries and the journal reports. Patients in the clinic had been inquiring about various newspaper headlines that suggested “Cure round the corner“. But these mass media articles were in stark contrast to the discussion section of the associated scientific journal reports that clearly stated “more research is required“.
There were already some wonderful examples of research writing that try to go beyond the headlines, such as the magnificent Parkinson’s UK medium website and the Michael J Fox Foundation research page. But I began wondering if there was an appetite for something a little more niche and in depth. I was thinking that if I had the condition, what kind of website would I be looking for?
So in late 2014, I had started posting the occasional write up exploring recently published Parkinson’s research that I thought was interesting. My initial efforts were all rubbish and have subsequently been deleted. But I found that I really liked the combination of learning about new discoveries and applying a bit of creativity writing to them. Particularly appealing was the problem solving exercise of explaining complex concepts and weaving them into a narrative that incorporated the big picture.
Martin’s arrival in clinic room 1 in 2015 changed my little writing experiment though.
After completing the cognitive assessment with him (which he aced), we sat and talked for about an hour on the topic of where the Parkinson’s research was and how the Parkinson’s community was getting its information.
Our discussion was a revelation.
And it only came to an end when Martin announced that he needed to get back to the airport (he had flown down to Cambridge from Edinburgh to take part in our research!).
Dear Parkinson’s research community,
In exchange, we publish semi regular reports of our research and the progress made. Over time, however, our methods of information dissemination have evolved into something akin to a foreign language to the average person. Worse still, we package it in a static, standardised document and publish it in “a journal” behind an electronic pay-wall.
Unapproachable, inaccessible, and unreadable – this does not serve society.
Yes, the subject matter can be complicated and requires certain technical terminology to allow for independent replication, which is necessary for the communication of results within the research community. But surely out of gratitude for the offered resources we could find a more approachable medium for the curious lay person who seeks more insight than simply “Cure round the corner” headlines.
People in the research community do not truly appreciate how little there actually is out there for the average lay person who is searching for information regarding a particular medical condition or science topic. Nor of the dark places on the web that folks will go to looking for information. And I fully appreciate how busy a research career is (throw in family commitments, etc), but we should be trying to do better and improve the system.
The society that funds our research deserves it.
“To me, hope is informed optimism” – Michael J Fox (Source)
After the Martin Taylor moment, the SoPD acquired a name and took on new meaning. It’s not that I saw any kind of opportunity, but rather sense of necessity.
I was looking at the dissemination of actual research to the wider public and thinking that we had all these amazing scientific investigations being conducted and wonderous digital technology designed for sharing information, and yet we still had so many patients who were unaware of what was actually happening (and for the record: despite best efforts, this has not changed a great deal – personal opinion, happy to be corrected/debated on this).
In addition to upping the writing effort, I also started going along to more Parkinson’s-associated events. This process introduced me to an ever widening circle of fascinating and inspiring individuals trying to do something about the condition.
For example, I was in the audience the Parkinson’s UK Florence Pite Memorial lecture at The Royal College of Surgeons when Lesley Gosden gave an amazing presentation on her experience as a GDNF clinical trial participant (similar to this video):
And many of the events I attended provided the fuel for particular posts. For example, during Q&A session of the Edmond J. Safra Memorial Lecture in 2018, a member of the audience asked a curious question:
“What’s the evolutionary advantage of Parkinson’s?”
There were some chuckles and it probably sounded ridiculous to most of the audience (why would a neurodegenerative condition have an advantage?!?), but it made for an interesting SoPD post (Click here to read more about this).
It was the people rather than the research that always provided the most interesting stories. For example, back in 2017 I came across Jeremiah Pate.
Jeremiah Pate – Source: qtworldsummit
The descriptor “a remarkable young man” doesn’t really do this guy justice: Not only has he worked on improving aircraft black boxes, but he was also making mini satellites to put into space (his company is called Lunasonde) all before he finished high school! Seriously, the kid has a Forbes magazine profile and he is still in college.
While working on the satellites in his spare time, Jeremiah noticed that several members of church congregation had Parkinson’s. He decided to turn some of his attention to finding a way to help them and his efforts led him to working in a lab between classes in his first year at the University of Arizona (Click here to read that post).
In 2019, Jeremiah presented a TedX talk about his research:
It will be interesting to see where life take Jeremiah. But there have been a lot of other examples of truly fascinating characters who have become the focus of SoPD posts.
For some examples, check out (in no particular order):
- Lysimachos Zografos and his biotech company Parkure – click here to read a post on this topic
- Sara Rigarre and her research on self tracking of Parkinson’s – click here to read a post on this topic
- Barry Chandler who is trying to make clinical trials seamless – click here to read a post about this
- Alex Reed and the team at the European Parkinson Therapy Centre – click here to read more about this
- Mick Ebeling and Not Impossible Labs – click here to read a post about this
- The Tasmanian light bucket advocates – click here to read more about them
- Advocate Eirwen Malin who is using story to change the world – click here to read a post about this
- Charles Nduka and the engineers at emteq labs – click here to read a post about this topic
- Larry Kramer and the ACT-UP AIDS advocacy efforts – click here to learn more about this
- Planet Patient‘s Mariëtte Robijn – click here to read a post about her
- Identical twins Jeff and Jack Gernsheimer teaching us about the genetics of Parkinson’s – click here to read a post about this topic
All of these individuals (and lots more – apologies to those not mentioned) have made for interesting stories on the SoPD. And I have always been stunned by the courage many of them show in their journeys.
And increasingly, I have loved the way so many of them are informing and directing where the field of Parkinson’s research is going – in many cases using their insights from the lived experience of Parkinson’s to help guide the science.
Fate whispers to the warrior, ‘You cannot withstand the storm.’
The SoPD has been a curious journey for yours truly as well. And along that road there have been many moments that stick out in the memory:
MOMENTS OF HAPPINESS
Over the 500 posts, there have been many that were an absolute joy to write. It has to be said that the website was started during a very busy and exciting time for Parkinson’s research, which has certainly helped. Some of these joyful posts have centered around really interesting clinical trial results.
The obvious example of this was the Exenatide: One step closer to joblessness! post. I had a difficult time containing the enthusiasm with that post. After so many clinical trials not meeting any of their endpoints, the results of the exenatide were extremely encouraging.
Other ‘joyful’ posts focused on patient initiated research, and the best example of this has been all of the activity surrounding the Joy Milne and the smell of Parkinson’s story. What an amazing tale! You couldn’t make it up. It will ultimately become the stuff of legend, and it is a really wonderful example of how insights from the Parkinson’s community are providing new directions for the research world.
MOMENTS OF FRUSTRATION
Research journal paywalls (Click here to read a SoPD rant about this).
See Frustration #1.
There are no adverts on the SoPD website. A small fee is paid each year to WordPress to prevent them. This action was taken because early on I was writing about the dangers of dodgy stem cell or herbal extract companies selling unproven ‘cures’ in some of the posts, and the WordPress artificial intelligence working behind the scene obviously thought that it would be wise to insert targeted adverts in those posts…. for the very companies I was criticizing! Not helpful.
Not a week goes by that aforementioned dodgy stem cell or herbal extract companies aren’t putting messages in the comments section of posts on the website. Luckily, there is a censorship function in the back room of the website that allows me to block a new comment. But no matter how often I block them, they keep trying (Einstein’s definition of insanity). Very annoying.
Finding an interesting new drug, thinking “that could make an interesting post“, and then doing a google search… only to discover that a SoPD post was written about it 12-18 months ago – seriously, it has happened!
…and yes, I am worried about my cognitive faculties. Too many late nights of science writing perhaps.
MOMENTS OF FEAR
There have been some nerve racking moments in the story of the SoPD. The first cease and desist letter from a lawyer for example. I was shocked not so much by the letter itself, but by the fact that anyone thought the website was important enough to justify the letter!
Another unforeseen scary aspect of the website has been the vast amount of correspondence. Two years ago it got rather overwhelming – each night there would be new 10-20 emails waiting to be answered, and all in the same vein: Please help
There have also been some posts that were rather terrifying to publish (and I’m still not entirely sure that some of them should be in the public domain).
A good example of this is The Agony and the Ecstasy, which discusses the research that has been conducted on 3,4-Methylene-dioxymeth-amphetamine (or more commonly known as Ecstasy) in the context of L-dopa induced dyskinesias.
The post was scary to publish for a number of reasons.
- Obviously, MDMA was and still is a Class A drug
- It is also a very harmful agent – not just on one’s health but also potentially on one’s relationships with family and friends
- At the time, I’ll admit that I was worried about the potential for reputational damage (what would research colleagues think of me if they read this?!?)
- Someone might read the post and make a really bad decision
But as Mary Baker MBE (formerly of the Parkinson’s Disease Society) has rightly pointed out, there is a moral obligation for societies to discuss topics that are considered off limits in terms of legality and ethics, especially if benefits can be attained from a better understanding of them.
After much discussion around multiple dinner tables, I bit my lip and published the post. I felt that it was a balanced presentation of the topic (with lots of cautionary notes), but it was still a bit scary publishing it. And while there has been some flack, I think I’m still ok with it being on the site.
MOMENTS OF AMUSEMENT
One tries to entertain at the same time as educate with a blog, and that has led to me sharing some personal stories in an attempt to amuse readers and keep them engaged. This has led to an increase in the number of people asking if I’m the “goat guy“? (Click here to read more about that).
Other amusing moments associated with the website have involved correspondence, both incoming and out going. One cease and desist letter arrived from a very forthright lawyer asking me to remove a particular piece of information from the SoPD website. They stated that this information was not in the “public domain“, and asked me to “please remove any mention of it immediately” – which I happily did. But at the same time, I felt it necessary to point out to the lawyer that the information in question was already available on several webpages of the organisation that they were representing!
As I suggested above, most of the SoPD has been written in the wee small hours, when no one is around to disturb you. Late night emailing, however, is not a good idea. For example, one late night I responded to a readers email with “Thanks for your massage and…” (instead of “message”).
MOMENTS OF REFLECTION
“So what have you learnt” a friend was asking me recently when inquiring about the little milestone for the website.
“Someone once said “All you can hope for is that you live in interesting times”, and I have learnt that we live in the most interesting of times” I replied, and then I explained that while there is never a good time to have Parkinson’s, there has never been a more exciting time for Parkinson’s research.
From the daily tidal wave of new research reports to the wide range of clinical trials exploring all kinds of novel treatment approaches – it is a really inspiring time for Parkinson’s researchers.
This graph is old (there were 10,584 Parkinson’s research reports in 2020)
My friend liked my enthusiasm, but tempered it by saying “that’s great, but how does it help me?” (they have PD).
I smiled. One of those sad but acknowledging versions of a smile.
“You wanna know what else I have learnt?“, I continued, “I care more about your condition than I care about my own”
My friend is aware that I was diagnosed with a heart condition 18 months ago. One of those sucks-to-be-me/”don’t invest in a retirement home” heart conditions. After being given the verdict, I asked the cardiologist if I would still be able to climb Mt Kilimanjaro, which was answered with a simple shake of the head and a grimace.
The irony about my diagnosis is that I now have a condition for which there is no cure, but there are good symptomatic drugs (sound familiar?). The situation has obviously resulted in a lot of reflection and reconsideration of many ideas. It has also put this science blogger in a curious position – I felt like I was in limbo between “Planet researchers to Planet patient” Mariëtte.
But most strangely, I have little interest in learning about the science/research of my condition. In fact, during the writing of this paragraph was the first time I’ve even had a look at what is going on research-wise. Perhaps I am still in the “honey-moon phase”, but the situation does intrigue me – how can I encourage others to get involved in research for one condition, when I don’t get involved in something that affects myself?
“Seriously, what does that say about patient engagement?” I asked my friend.
“That patient engagement is a nice label, but really hard in practice?” came the response, “What else have you learnt?”
“You want the list?
1. You cannot improve science communication simply with more science.
2. Words really matter – “Primum non nocere” can certainly be applied to the written word. [which brings us back to that Agony and the ecstasy post]
3. Family really matters.
4. Social media is a terrible means of communicating science (and yet…).
5. The reader is the best source on what a website is missing (but sometimes their suggestions are a wee bit outside of the bandwidth of the author).
6. There are very few facts, and even less right or wrongs; Context is everything and what we should be looking for is simply levels of certainty”.
When I first noted that the 500th post was approaching, I was thinking that it deserved something special to mark the moment. But as the milestone approached, I found that it was becoming something of an annoyance and my enthusiasm for it waned. Initially I thought about getting others involved, but gradually that idea shifted towards “don’t disturb them” and just get it out of the way & get back to the science.
And then on the eve of publishing the post disaster struck.
Life isn’t like a box of chocolates. I like everything inside a box of chocolates and there is usually some kind of instruction on the packaging about what is inside. Life isn’t like that at all.
Very recently I have been thinking Ziad Abdelnour’s quote is more appropriate: Life is like a camera.
You should focus it on what is important to you. Capture and appreciate the good things, learn from all of the negatives, and remember that if things don’t work out you can always choose to take another shot. But most importantly, you must appreciate the opportunity that the camera provides – regardless of how good the camera is – and make the most of it.
Here’s to the next 500!
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