Welcome to the Science of Parkinson’s,
Here I try to provide a better understanding of the second most common neurodegenerative condition: Parkinson’s. Bridging the gap between the media headlines and the actual science.
THE GOAL:
Very simple: to explain the science and research that is currently being conducted on Parkinson’s in relatively plain English that even my non-scientific mother will understand.
HOW I AM DOING THIS:
I post regular updates on what is happening in the world of Parkinson’s research, explaining the science behind the new discoveries and clinical trial results, and introducing you to some of the people doing the research.
I also like to present curiosities related to the condition in the hope that someone out there (researcher or layman) could make an interesting connection. It may be a simple observation, but it could also be a missing piece of information that could help lead to a better understanding about this debilitating disease.
WHO AM I?
My name is Simon, and I am the Director of Research at Cure Parkinson’s.
All views/opinions expressed here are solely my own, and may not reflect the views of my employer or associated parties.
MY BACKGROUND:
Originally from New Zealand, I have been working in the field of Parkinson’s research for over 15 years – both in academia and biotech. I have a PhD in neurobiology, I have authored/co-authored more than 30 scientific publications, and I have experience in both lab-based research as well as clinical studies on Parkinson’s.
CONTACTING ME:
If you have any questions, comments, constructive feedback, or are simply bored and needing a laugh – you can contact me here.
FOLLOWING THE SOPD:
You can follow the blog here by clicking on the ‘Follow’ button on the top of the right hand column of the front page of the site.
For more regular updates as to what is happening at SoPD and the wider Parkinson’s research community, you can follow the site on Twitter.
PUBLIC PRESENTATIONS:
I am regularly making presentations about Parkinson’s research at support group meetings (and associated organisations).
These presentations will be about 30 minutes long and include a brief background on the basics of what Parkinson’s is, then an overview of the research that is currently being done, before we discuss ways in which people can get involved. And I am happy to answer questions at the end.
For meetings within the south east of England, my fee is a cup of tea and a piece of cake (if any happens to be floating around). For visits further afield in the UK, please contact me – I’m sure we can make some arrangements. For international talks, I only fly business class!
I hope you learn/benefit from what is presented here on the site. All opinions are my own (and should not be considered medical advice under any circumstances – please read the disclaimer below). And all of the information is provided under a Creative Commons Attribution 4.0 International License, meaning you can do whatever you like with it.
Kind regards,
Simon
All of the material on this website is licensed under a
Creative Commons Attribution 4.0 International License
You can do whatever you like!
MEDICAL DISCLAIMER
The content provided by the Science of Parkinson’s website is for educational purposes only.
It is provided by research scientists, not medical practitioners. Any actions taken – based on what has been read on the website – are the sole responsibility of the reader. The information provided on this website should not be considered medical advice, and any actions being contemplated by readers should firstly be discussed with a qualified healthcare professional.
Our goal is to help people better understand Parkinson’s, but under no circumstances should any of the information provided be considered medical advice.
Pursue what is meaningful, not what is expedient
The Science of Parkinson's 
How can I subscribe to your blog via email?
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Hi Deepak,
Thanks for your message. We currently do not have an email alert system, but we would suggest using Blogtrottr (https://blogtrottr.com/) for email updates. Very easy to use.
Kind regards,
Simon
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Greetings, fellow PD advocate here. Below is a link to my latest blog entry about the future of PD therapies, thought you might be interested in taking a look.
I have recently started collaborating with a number of research labs that are working towards bringing to practice some of the therapies mentioned in that article with the goal of one day bringing an end to this disease.
I hope that my article might inspire people to keep fighting knowing that there are so many new and exciting therapies coming soon. Feel free to share that information with anyone who you think might benefit from it.
Looking forward to what the future has in store,
Benjamin Stecher
tmrwedition.com
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Thanks for the message Ben – love the blog and we fully recommend reader follow it. A prolific writer and dedicated advocate, Ben will keep you up to date on fascinating new developments not just in the world of Parkinson’s disease but science and technology in general. Always interesting content – a recommended read!
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Thanks for reaching out to me. I was diagnosed in October of 2012. I love the blog and the information. I am definitely pleased to have so much info gathered in one place.
Best regards, Jeff
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Glad you like it Jeff. Let us know if there’s anything in particular you’d like us to look into or explained. Love your musings on your website (nimbus432.wordpress.com), you have an amazing gift with the writing.
Kind regards, Simon
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Love your blog, accessible information I can trust, with just a hint of Kiwi humour. I will keep promoting it here in New Zealand.
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Hi Margaret, thanks for your message and kind words. Yes, very kiwi and feeling particularly proud of it this week (@EmiratesTeamNZ ). Glad you like the site, and thanks for sharing.
Kind regards,
Simon
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Hi Simon
Thanks for your article about Doxycycline.
I’ve started 50mg a day and will keep you posted.
If so many people are already taking it for Rosacea, and using it to prevent Malaria – having been on it for years – is there really an genuine issue re. safety and drug resistance??
Best regards
Steve
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Hi Steve,
Thanks for your comment. It is very easy to assume that long term antibiotic use is largely harmless, especially subthreshold, but this is not true. Beyond all of the usual issues with long term antibiotic usage (leaving the consumer at increased risk of infection), there can be other more serious side effects that do not get discussed much, such as an increased risk of colorectal adenoma (http://gut.bmj.com/content/early/2017/03/16/gutjnl-2016-313413). Antibiotics can also disrupt the body’s ability to produce the bacteria that is necessary for the efficient breakdown and absorption of the nutrients in the gut. This can leave the body malnourished. I am currently camping this weekend without much phone coverage, but will expand on this when I get back. At the moment I will only add please discuss any change in treatment regime with your doctor before starting anything.
Kind regards,
Simon
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Simon, a friend sent me your blog which is really useful. I tried to ‘Follow’ you but WordPress just wanted me to set up an account, can you advise another way as I would really like to read your research. I could not ‘contact you’ either, maybe I have an old computer. Many thanks Katie
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Hi Katie,
Thanks for your comment – it is annoying, but the WordPress ‘follow’ button service requires readers to set up a user account in order to receive notifications about a particular WordPress website. It is silly, because most people give up when confronted with that account setup page. They do have a notification app that I could use, but they have placed that behind a £16 per month service fee.
The best way to be notified is to use a website like ‘Follow that page’ ( https://www.followthatpage.com/ ) which will email you each time the SoPD website is updated. That service just requires your email address and in their terms and conditions they state that they do not share any of your contact information with any other parties. If you are not comfortable with that, there are options on how to set up notifications via your web browser (for example, using the Google chrome browser you can use the ‘page monitor’ plugin – https://chrome.google.com/webstore/category/extensions?hl=en; For Firefox browser users there’s a similar add-on called ‘Distill Web Monitor’).
Having said all that, if you are anything like me and you just generally don’t get along with computers, the simplest option is to email me directly ( ss2060@cam.ac.uk ) and I will let you know whenever a new post is published (and there will be NO sharing of your email address with any third parties, etc).
I hope this helps.
Kind regards,
Simon
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Please add me to your Facebook Friends. I would like to follow all your publications on Parkinson’s research. I have published my own blog on my experiences with Parkinson’s and Rock Steady Boxing; https://fightparkinsonswithexercise.com/
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Hi John,
Thanks for your comment and love your blog (can recommend it to readers). The easiest way to follow the activities of the SoPD website is to click on the “Follow” button on the right hand side of the page, just under the search function near the top of the page. And the same applies to the Facebook page. I’m not very good with Facebook though, I am finding Twitter (@ScienceofPD) and WordPress here much more convenient.
Keep up the great work on the blog.
Kind regards,
Simon
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I really appreciate your comment about my blog. Yes, please share my blog URL https://fightparkinsonswithexercise.com/ with your readers. That would be great. I enjoy reading your publications on your blog. You are doing a great job in keeping Parkinson’s patients informed on research progress of this disease. I will keep promoting your blog. Thank you, John
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Hi Simon–
My husband has PD and I’m constantly searching the internet for new research and news about this disease. THANK YOU so much for your wonderful website and all the information you freely share with us! Checking your website at least three times a week leads me to other resources and new developments in the quest for a cure. You are awesome!
Lisa
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Hi Lisa,
Many thanks for your message. You kind words made my day! Glad you like the website. Please let me know if there is anything in particular you (or your husband) would like to see a post on.
Kind regards,
Simon
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There’s a great need for bridges between the research and patient communities, and this blog addresses that need as no other site (of which I am personally aware) has done.
Ideally, one would wish that neurologists in clinical practice would be looking through current research for ideas on how to improve the lives of their patients, but unfortunately the present assembly-line model of medicine seems to augur against clinicians taking an interest in much beyond the well-established palliative treatments. This leaves patients with the task of digging through current research to find that which seems most pertinent to their own situations.
I’m truly moved by your efforts on behalf of patients; thank you for taking on this important work.
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Hi Lou,
Thanks for the kind words – glad you like the site. I wholeheartedly agree with what you have said, but the question becomes ‘beyond silly blogs like this, how do we change the system?’
Kind regards,
Simon
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That question has more to do with the integrity of our political process than with the health care system as such. We’re all stakeholders in a world that is dying. The sickness of our health care system, and our own sickness as individuals, are in part an expression of that overall decline.
The tendency in such a system is toward radical entropy, but there’s also an increasing rationale for undertaking constructive change. Within the U.S., I see the Democratic Party tendency centered around Senator Bernie Sanders to be promoting such constructive reforms. It’s a knife’s edge between such democratic socialist approaches and the hatred and blaming of those supporting President Trump; the outcome could fall in either direction.
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Hi Simon,
Did you happen to see the NOVA presentation “The Origami Revolution”? One section addresses the folding of proteins (think alpha synuclei). Link here: https://video.kqed.org/video/nova-origami-revolution-episode/
George
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Hi George,
It’s a very interesting documentary. Thanks for sharing.
Much appreciated,
Simon
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Hi Simon
Learn so much from your site, so thank you. I check almost daily to see if you have posted.
I wonder also if you enjoy letting some of your Antipodean sense of humour out eg: “barking up the right tree”
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Hi Paul,
Thanks for your comment – glad you like the website. You can take the boy out of the antipodeans, but you can’t take the antipodeans out of the boy, I guess.
Kind regards,
Simon
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Dear Dr Simon Stott,
Vᴇʀʏ Bᴇsᴛ Wᴀʀᴍ Wɪsʜᴇs ᴛʜɪs Hᴏʟɪᴅᴀʏ Sᴇᴀsᴏɴ ᴀɴᴅ Hᴇᴀʟᴛʜʏ Nᴇᴡ Yᴇᴀʀ ᴛᴏ Yᴏᴜ ᴀɴᴅ Yᴏᴜʀ ғᴀᴍɪʟʏ
Mᴇʀʀʏ Cʜʀɪsᴛᴍᴀs
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Thanks Radosla! The same for you and yours. I hope all is well.
Kind regards,
Simon
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Great site. As a retired librarian who knows literature research, it’s what I would’ve written had I just a bit more expertise like you! Do you have a personal connection, family or friends who have or had PD? I was diagnosed 12 years ago at age 61, my father diagnosed age 75 (died of black lung & lung cancer age 78), and my 10-years-older sister (now age 83) was initially diagnosed with PD a few years after I was diagnosed. But now a few years later her doctors say she actually has MSA, which I find both shocking & alarming. Might I be next? I appreciate your stance toward PD (syndrome not disease), great variety of presentations, so much uncertainty. I’m unusual in my large PD network in having had a huge tremor (now gone due to DBS) but not much else for many years, and also in having little to no response to Sinemet & other meds. Still doing okay 12 years after diagnosis (but many more years after symptoms onset), keeping active at gym & tricycling, but started having far more & worse symptoms (gait, balance, speech, language, choking, etc.) after DBS 2 years ago, but still good cognition. PD’s so interesting, isn’t it? We’re all so different. Hard to make any generalizations about it, but that doesn’t stop most people. Thanks for your more nuanced approach. Keep up the good work, and please let me know if you have any insights into my situation.
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Hi Pauline,
Thanks for your comment. I’m glad you like the website. No, I do not have a personal connection to Parkinson’s. I became interested in it while working at a biotech company in NZ that was trying to take a novel compound into the clinic for neurodegenerative conditions. At the time Parkinson’s stuck me as the most solvable of the conditions…. and now 15 years later, I’m still at it. It does feel more personal now, however, as I have a lot of friends within the community affected by the condition.
MSA is generally considered to be sporadic, meaning it occurs in people with no history of the disorder in their family. So your mother’s situation may well have been different to your own circumstances.
Thanks again for your comment.
Kind regards,
Simon
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Congratulations on your research and blog. I know I am off topic here but would should you be kind enough can you please advise (if you happen to know) if mucuna pruriens can trigger favism (G6PD)? I have done some search and was unable to find an accurate answer. Thanking you in advance for your reply. Best regards. Chris
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Unless I missed it, I can’t find reference to Caloric Vestibular Stimulation (CVS) in your website. Both this and Galvanic Vestibular Stimulation (GVS) have credible clinical testing to back them up and I have personally experienced GVS. I would greatly appreciate your scientific view of these treatment approaches. The team at Kent University, led by Prof. Wilkinson are currently using GVS to try and understand the ‘how’ and ‘why’, having established that vestibular stimulation does work for people with Parkinson’s (as well as certain other conditions). My own pet theory is that it resets our proprioceptive view of our body’s functioning and position. Benefits might turn out to be ‘just’ symptomatic but the vestibular system is really well connected including the parts of the brain affected by Parkinson’s, so there may turn out to be some more profound effects with long term usage. In terms of safety and potential non-invasive accessibility it must surely score highly. I for one will be watching closely for further news from the team in Kent,
https://www.sciencedirect.com/science/article/pii/S1353802019302524
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OMG, I love this blog and its purpose to make a bridge between researchers and layman. If only were there another Simon doing this for allergy related research:)))
(you’re more than welcome if you have any references, books, papers, etc that one not familiar with the medical field can trust)
Anyways, thank you for doing this, I’m it sure helps a lot of people.
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Simon, a friend with Parkinson’s who is enrolled in the Prevail-Lilly trial directed me here. I’m impressed by your straightforward explanations and clear language. In fact, yours is the best Parkinson’s Disease website I’ve seen. Thank you!
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Hi, Simon. Many thanks for your work. Question: You wrote about Neuroaspis. Any update?
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