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Every six months or so, I put up a post asking for feedback/thoughts/suggestions on the style/content of the site. Or requests for any special topics readers would like to read. In this post, I also try to provide some insight as to how the website is going and what is happening behind the scenes. The whole point of this particular post is to provide an opportunity to you the reader to help improve the site – any and all suggestions are welcomed. |
The State of the Blog address. Source: Tngop
So lets begin with where things are at present.
The state of the blog:
The blog has been running since the 9th September, 2015. There are currently 155 individual posts (64 this year) dealing with all manner of Parkinson’s disease research-related content (for the full list, please see the site map page).
I have had some readers ask about how much traffic is visiting the site on a regular basis and in the interest of full transparency blah-blah-blah: the site is currently receiving about 3,000 visitors per week. Curiously, Mondays receive the most views (approximately 21% of visitors), and 8pm is the busiest time of each day for the site (approximately 12% of views – is nothing on TV on Mondays nights?).
Of the 75,558 visitors thus far this year (as of 17th July):
- 31,317 are from the USA.
- 9,026 are from the UK
- 4,519 are from Canada
- 3,109 are from Israel
- 2,854 are from Australia
- 2,218 are from Germany
- 1,685 are from Italy
- 1,521 are from South Korea
- 1,500 are from India
- 1,492 are from France
And 832 are from New Zealand (16th place) – basically my mum telling all of her bridge partners about her son!
The most popular posts this year have been:
- Update – Mannitol and Parkinson’s disease
- The road ahead – Parkinson’s disease research in 2017
- Manna from heaven? Mannitol and Parkinson’s disease
- Cannabis and Parkinson’s disease
- Phase II trial launched for Nilotinib
And the prize for the least viewed post goes to: Brain (not Heart) warming research
What new additions have been made recently?
Following the previous suggestions of readers, the site has a search function on the top right hand side of each page. I have also started using a summary box at the start of each post so that people can decide if each new post is of interest to them. I have also added to the menu bar of key topics, specifically a page on the genetics of Parkinson’s disease, a blog-of-the-blog page (for those curious about what is happening in the background at the SoPD), and a page about the BIRAX/Parkinson’s UK Breath analysis study that I am involved with at the day job.
The Facebook page (which kicked off in February 25th 2017) has been a good addition to the site, allowing for the highlighting of articles of interest in the general media. The twitter feed is more for those interested in daily updates on the Parkinson’s research side of things.
And what additions could be made?
Here is where I am open to any and all suggestions.
Two small caveats:
First, I am desperately trying to avoid any posts or pages that require regular updating. There is nothing sadder on the interest than a long forgotten, out-of-date webpage. Having said that I am working on a page for the main menu that will look at commonly used Parkinson’s drugs (based on a reader’s suggestion).
And second, I am regularly (read ‘probably on a daily basis’) rejecting messages in the comments section of posts that offer any kind of product or service (e.g. ‘miracle herbal cure’). I am trying to avoid any ethical or conflict of interest situations with this policy. There are lots of other places on the web where such comments can be found, this isn’t really the place for it. Any advertising that does appear on the site is solely owned and controlled by WordPress (the server provider).
I have had requests for posts about other conditions that fall under the Parkinsonism umbrella (such as Progressive Supranuclear Palsy and Multiple System Atrophy), and I am hoping to address this in future posts as new research becomes available.
I have also had a crack at video content, but given that I have a face for radio and a voice for silent film, it hasn’t really worked out. In addition, while fun it is rather time consuming.
Other than that…
Are there any suggestions? Please feel free to contact me directly, or to leave any suggestions/requests in the comment section below. Any and all feedback/thoughts would be appreciated and considered.
Ok, back to normal posts tomorrow – looking at wireless deep brain stimulation!
The banner for today’s post was sourced from OnthecontraryKelly
The Science of Parkinson's 
Thank you, Simon. I suspect that I account for about 10% of your US readership; I’m constantly checking your site for updates because I think it’s brilliant! I’m a Ph.D. physicist, recently diagnosed with PD, and looking for whatever information I can find. I came across your site and recognized it as just what I need: a science-based site, weeding through all the medical terminology and exhibiting the patience to explain it in layman’s terms. One thing I didn’t expect was just how interesting I find the field. Thank you so much for this resource. Please keep it going!
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Hi Tom,
Thanks for the comment and kind words. Glad you like the site. Please let me know if there is anything you’d like more research on.
Kind regards,
Simon
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The weight loss study you linked to looks interesting. Maybe not enough for a whole post. Is it true that losing weight early on is a bad sign? or does it just mean you need medication?
Higher age, baseline weight, female gender, & higher baseline UPDRS scores determine weight loss in #Parkinsons https://link.springer.com/article/10.1007/s00415-017-8562-4 …
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Hi Don,
Weight loss is quite common in PD, particularly when dyskinesias are involved. And this is a difficult question to answer as it can vary from person to person. In general, yes, early weight loss can be a bad sign. It appears to correlate with a worsening of health-related quality of life. Prof Michael Okun’s group in Gainesville, Florida published research on this in 2015 ( http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124541). And then there was the report last year which suggested a worsening in UPDRS scores with weight loss (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469290/). But weight loss is not necessarily a reason to panic. It can also be caused by medication.
I hope this helps.
Kind regards,
Simon
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Hi Simon. All I can say is please, please keep up the good work and keep your site and reports going! As a Parkinson’s person with a not-too-technical background, I find your summaries of the research studies immensely readable and informative. I am the Research Coordinator for a local branch of Parkinson’s UK, and try to summarise your posts for our local members. It is vital for Parkinson’s people to stay positive, and for this we need hope – hope that the cause or causes can be identified more clearly, hope that more effective treatments can be made available, and hope that maybe one day in the not too distant future a cure may be discovered. Your posts certainly help us to stay positive! Thank you!
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Hi Ken, thanks for your comment and the encouraging words – greatly appreciated. Fear not, I’m not planning to go anywhere. This is a win-win deal, I’m learning about new stuff as I go along as well! Question: Which PDUK branch are you?
Kind regards,
Simon
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Hi Simon – first of all you should be congratulated on producing a blog which is consistently high quality and informative. Speaking as both a Parkie and a scientist, you strike the ideal balance between describing the research and not being simplistic.
The only suggestion for improvement is to think about adding a different kind of post, like a “short communication”, somewhere in between the long posts and a tweet. This could take the form of the summary with key points, followed by the reference to the original paper. This will allow you to cover more of this extensive field, and hopefully not take any more of your valuable time. If people would like to know more, they can always ask you to write a long blog in the comments section.
Keep up the good work!
Kevin
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Hi Kevin,
Thanks for your message and thoughts. This will sound ridiculous, but I have actually been trying to shorten the posts recently (two very big ones coming up shortly). Some of the posts have gone on too long and I appreciate that most readers don’t want to get bogged down in the details. A ‘Short communication post’ is a good idea. I might run with that. As you say, it would probably allow for more coverage and more regular postings. Many thanks for your thoughts.
Kind regards,
Simon
PS I hope all is going well for the “Parkinson’s 200 plus” event (http://www.parkinsons200plus.org/). It looks like it’s going to be a fascinating day in Oxford on 18th September 2017.
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Thanks for all you do Simon. I love the summaries. I also appreciate your subtle humor that’s woven in. This disease requires frequent laughter, in my opinion.
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Hi Mr Pibb,
Thanks for your comment and kind words. Much appreciated. It’s not really a laughing matter, but apparently humour is one way of keeping the reader engaged (that’s what the ‘Idiots guide to blogging’ book says at least). Glad you like the posts. Please let me know if there are any topics of interest that you’d like to read more on.
Kind regards,
Simon
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Hi Simon,
Following an item on BBC news this morning about smell and Parkinson’s disease I wondered if you had anything else to add on this subject. I noticed that my husband’s body smell changed some 10 years before he was diagnosed and at our local branch there are two other people who have a similar smell but I have not noticed it on anyone else at the branch. It has made me wonder if these three have a similar ’cause’ of their PD ie maybe a similar genetic mutation. A bit worrying as one of them has familial PD. What do you think? Maybe a bit fanciful.
Like others I find your posts very informative and supportive for the challenges we are facing.
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