As we have previously discussed, 2017 was a fantastic year for Parkinson’s research (Click here to read that post). And as we approach the end of January, it is already apparent that 2018 is likely to be as good if not better (Click here for an overview of what to expect from 2018).
The transition into a new year brings with it a period of reflection and resolutions. At the start of each year I usually have a post that asks for readers feedback regarding how the SoPD website could be improved.
This year is going to be slightly different.
In today’s post we will discuss some of the ideas that I have in mind for 2018 – any and all reader feedback would be greatly appreciated.
The title of today’s post is a play on words. It is a salute to the song ‘My generation’ by the rock band “The Who” (click on the image above to hear the song). The song was released as a single on the 29th October 1965. It reached No. 2 in the UK and No. 74 in America.
Despite never actually reaching No.1, Rolling Stone magazine still named ‘My generation’ the 11th greatest song of all time (Source). The British music magazine New Musical Express (NME), noted that the song “encapsulated the angst of being a teenager,” and was a “nod to the mod counterculture” (Source).
Pete Townshend. Source: Rnrchemist
The Who‘s guitarist, Pete Townshend, apparently wrote “My Generation,” on his 20th birthday (19th May 19th, 1965), while riding a train from London to Southampton for a television appearance. He claims that it was never meant to be the battle cry for young mod rebels that it went on to become.
Rather it was intended to express Townshend’s fears about ‘the impending strictures of adult life’. He preferred to stay young, free and experimental.
I am not having any teenage angst issues or fearing the very current strictures of adult life. I am simply using a play of the song’s title here in order to discuss a new year’s resolution I have made regarding the SoPD website over the never 12 months.
Let me explain.
Photo by Joseph Rosales on Unsplash
I am a scientist by trade.
This occupation requires three things: energy, curiosity and experimentation. Discipline and rigour can be trained, but energy and curiosity are necessary characteristics from the outset. You certainly don’t need to be the sharpest knife in the draw (I am living proof of that!), but energy, curiosity and experimentation are key. And if one of them is missing or starting to fade, you need to re-evaluate your situation.
Now, curiosity and energy have kept this website going for sometime now. One random google search about an obscure drug or a new press release highlighting a new piece of research has been enough to keep me sitting here at 3am writing a post that spells out the science behind that topic and Parkinson’s.
But I will admit to a lack of ‘experimentation’ recently.
Photo by Michał Parzuchowski on Unsplash
If I am honest, I have settled into a rhythm – a pattern of format and content. And while some level of consistency may be appreciated by readers, I think that ‘settling into’ anything is not necessarily a good thing.
Things need to evolve.
Thus, my new year’s resolution for the SoPD website was to start getting experimental with things again.
Usually at the start of the year, I have asked readers for feedback on how they feel the website could be improved. This has previously resulted in lots of ideas being proposed. Some great ideas which have been incorporated (such as a search engine) and other idea that are simply beyond the scope of this humble little effort (eg. a list of all ongoing clinical trials and lab-based research for Parkinson’s – others in the PD community are working on this though).
But I have come to realise that this approach is flawed.
Asking others for ideas is the wrong idea. Mother nature doesn’t do it, she just experiments. So this year, rather than asking for ideas, I am simply going to spell out the ideas I have planned for the website over the next 12 months and any & all reader feedback would be greatly appreciated.
Photo by Cristian Escobar on Unsplash
In 2018, I am hoping to initiate these three experimental ideas on the website:
- A monthly overview of the Parkinson’s research that was reported during the last 4-5 weeks. This idea will hopefully provide readers with a smorgasbord of topics to explore in just one post at the end of the year. It will also be an exercise in self preservation – the 12 month summary that was provided at the end of the 2017 nearly ended me! Admittedly, this is not an overly ambitious idea, but I think it would be useful for readers.
- Online meet-up sessions with readers in which specific topics can be discussed. The format for this idea is a work in progress, but I am looking forward to experimenting with it. This will not be an online clinic where folks can turn up and ask questions about various medications, but rather an opportunity to discuss ongoing research topics and look at how those studies could take a more patient-centric approach. The goal of the forum will ultimately be for it to have a two-way street feel – that is to say if you sit in on a session you will hopefully feel comfortable with sharing your experiences and ideas. And fear not, it won’t be my ugly mug fronting all of the sessions – I am keen for different researchers to get involved with this each session. All that attendees would require is a computer that can handle Zoom. If anyone is interested in being a guinea pig on this madcap venture – please contact me. More information on this soon.
- Increasing content by inviting other researchers to post topics on the website. This is not a case of me stepping back from the website (I still really enjoy doing this). Nor is it an attempt to generate more ‘readers for revenue’ purposes (the site has never made money – all the advertising is controlled by WordPress). It is simply an attempt to increase the amount of information provided. The same rules will apply – such as no commercial products or services will be advertised/endorsed, and only content backed by peer-review research reports will be presented (if there is no data, there will be no post). I have no objections, however, to researchers highlighting their own research, especially if it results in constructive feedback from the PD community as to how the research could have more impact for them. If there are any researchers who are keen to write a post – please contact me (and I should add that I am not opposed to members of the PD community making contributions – if anything I would encourage it!).
Those were the three ideas I have been thinking about applying this year in my efforts to be more experimental.
Let’s see how they go.
Unlike most of my personal resolutions (which usually evaporate in the light of day on the 1st January), these one have certain milestones in place to help me stick to them (for example the end of January is fast approaching, so you can expect a January PD research review in the next few days).
As I have said, I would appreciate any feedback on the ideas and I have left them rather loosely defined in order to provide scope for alternative thoughts.
Let me know what you think.
The banner for today’s post was sourced from besthealthmag
27 thoughts on “‘Talking bout my resolution’”
sounds almost as good as the Who
What do you mean ‘almost’? 😉
You are certainly the equal of Pete Townshend, but throw in Roger, John and Keith – not to mention Boris the Spider – well – you are almost there!
Ok, when you put it like that…that’s fair
Hi Simon !
I am 48 years old, myself a therapist, but for 2,5 years diagnosed with Parkinson. Interesting site you have………I found it via HealthUnlocked…….
A “burning” question ……..what’s is your opinion about VitB1 (an italian doctor, has a lot of success with that……….)(Dr. Costantini)
Thank you a lot in advance !
Thanks for you comment & question. I generally don’t like to give opinions on particular drugs or supplements, as I’m not a clinician – just a research scientist – and even if I was a clinician, it would be unethical for me to provide opinions as I’m not familiar with your personal medical history. But it is also difficult to provide an opinion when there is so little published research on a particular drug or supplement. And this appears to be the case with VitB1 (also known as thiamine).
Yes, Costantini & co have conducted a couple of open label studies of VitB1 on individuals with PD, but these studies only prove that VitB1 is safe in folks with PD. Until a randomised, double-blind study has been conducted we cannot rule out a ‘placebo response’. In addition, Costantini & co appear to be testing VitB1 on all kinds of conditions (MS, Friedreich’s ataxia, stroke, fibromyalgia, dystonia 16, etc) and always in individual case studies (1 or 2 participants in open label studies). Before Costantini & co, there were a pair of Vietnamese chaps doing the same thing (Luong KV, Nguyễn LT). There is very little preclinical research, so it is very difficult to make any conclusions. It would be nice to see some more thorough research on the topic. Sorry I can’t provide more help.
It’s good to see experimentation in action, especially with The Who in the background, one of my favourite ever bands. So, continuing with the theme:
Great idea. Not only will it be easier for you to write, it’ll be easier for us to keep up. It’ll also stop you saying “I Can’t Explain”.
Online meet up:
It will be important to choose a tight theme so the discussion is focused. We’ll be able to “Join Together”, and I’m happy to be one of your guinea pigs.
Invite other researchers:
Again, a good idea to have a “Substitute”, sharing the load and hopefully widening the debate. You could introduce a theme for a series of blogs with several contributors, so that we Parkies get a sense of the unanswered questions and the different theories behind them.
Finally, like that old classic, you’re doing a great job of responding to the call of “Let’s See Action”.
Thanks for your comment and thoughts regarding the ideas. Much appreciated. I am currently thinking of starting off the meet ups idea with a particular topic that I can give an overview/presentation on before having a discussion about it, which will hopefully lead to questions that can be investigated/followed up. Ideally, this would be the format for future guest PD researchers to discuss their own research.
The Kevin is alright!
Thanks Simon. I’m all for anything that will keep you in the game. I must admit I’ve been amazed at your ability to keep up your blogging, what with a research-filled day job and all. Please note that I find your blog invaluable for all of the information and coherent explanations you provide. I like the idea of the monthly summary; I’ll try to be patient and wait for the end of the month. And likewise, please consider me another volunteer to try the meetup on Zoom, though I’m concerned about the time difference and how that might work. As for other researchers, I hope you can guide them in putting in just the right amount of technical description (not too much jargon and biochemistry background assumed, but still detailed enough to give a solid scientific understanding of the puzzle). You have a unique gift for this that I’ve come to rely on.
Thanks again for all your efforts.
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I appreciate the kind words about the website. And thanks for your thoughts regarding the ideas.
It is a really useful skill for researchers to be able to explain in plain English what they are doing. And it is particularly important for the PD community now with regards to the clinical trials of experimental drugs. As we shift further and further away from the dopamine-based therapies of old and venture into new and wonderful alternatives (think immunotherapy), it is critical for the PD community to be aware of the basic science behind these approaches in order to make informed decisions about whether they want to partake in a clinical trial or not (if they so wish). This is a major driving factor behind the site.
All sounds great! Even if nothing changes, you still have the best content. Thanks for continuing to make it better.
Something I struggle with is understanding the various angles the problem is being attacked from and the progress in each field. Some key categories that I tend to bucket things into:
Desease modification therapies
Alpha Synuclean (albuteral, prothena, vaccines etc)
For your monthly updates, it would help me (and maybe others?) If content was binned with some general themes. For example with stem cells, it would be great for a stem cell snapshot what we learned about stem cells in the last month. Same with asyn, key trials, etc.
Your annual summaries capture quite well the state of the union along wth the path ahead. Indeed if you had content organized in this format monthly it would be easier for me to read and you to summarize:)
I hope this makes sense. My feelings won’t be hurt if you ignore this completely.
Thanks As always.
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Thanks for your comment and thoughts regarding the ideas – nothing will be ignored so your feeling are safe. For the February review I will try binning the info into organised themes as you suggest – ideally with a 1-2 sentence summary for each theme. I don’t think I like the random scattered list format here.
And as addendum. Something else that will help my caveman brain understand what you are talking about…. I’d love to see high level summaries of new content answinf three simple questions.
What did we learn?
Why is it important?
How does it fit into the puzzle as we understand it today?
Answering these each in on Twitter tweet or less would help me understand the content ant contxt a little more.
Addendum noted and I will try to apply this to the next monthly review.
what i most appreciate about your blog is (a) that you make the science so much easier to understand (as compared to reading pubmed); and (b) you pick out the important studies that cool scientists (like yourself, of course) see as helping move things forward. it’s hard for non-science people like myself to read pubmed submissions and figure out which are more consequential. and it’s a big bonus that your style of presentation is so engaging and that you find the time to comment on the comments. for me, your other ideas might be fun – i think we’re all up for whatever is fun for you. i only have one suggestion: how about we all get together at a fancy restaurant so we could treat you and drink a toast to your brilliant contributions?
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Sorry it took 4 days for me to comment on your comment. Thanks for your message – very pleased that you find the website useful. I’ll definitely take you up on that fancy restaurant offer sometime (no toasting necessary though).
I’m so glad you have this website. I need to have someone with all the scientific info relating it to me in “regular people” terms. Fantastic job.
Thanks for your message – glad you like the website. Please let me know if there is a particular topic you’d like to have discussed here.
I would like to see SYMMETTREL discussed. And MANNITOL discussed. Thankyou so much.
Also which direction are the meds heading. ? Away from dopamine drugs? Please explain.
all three of your ideas sound good to me.
For what it’s worth – while you have been receiving well-deserved kudos from readers who appreciate your ability to explain complex science to non-scientists, I wish to go on record as a scientist who equally appreciates your doing so in a way that preserves the complexity and detail of the subject matter.
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Your comment really made my day! Many thanks. While the site is oriented towards the lay folk in the PD community, I have been touched by the positive feedback it has received from the research community as well. Thanks again.
All three ideas are good ones, but I especially like the idea of monthly updates on Parkinson’s research. Your site is already my go-to place for the latest information on Parkinson’s research, and monthly updates will only make it better. As someone with PD, it is important for me to know that progress is being made on the scientific front. Thank you for providing this information.
Thanks for your comment/feedback and kind words about the website. The first monthly update is now live (https://scienceofparkinsons.com/2018/01/31/mrr-january-18/) – I hope you like it.
Simon, thanks for your excellent blog. Whether you like it or not, you’re becoming something of a leader in the Parkinson’s world. Experimentation, yes: by you, but also by us citizen scientists. You could have an army (well, a regiment) of researchers. John
Thanks for your kind words regarding the website – I would take this opportunity to point readers towards your own site (http://www.parkinsonsmeasurement.org/). Not a leader, just happy to be standing in the front lines during this dynamic period. Never a good time to have PD, but it is a very exciting time to be involved in PD research at the moment (for both the researchers like myself and the growing ranks of citizen scientists). Thanks for your comment – much appreciated.