Thread 18: To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film?

[DisappointedReader]

Hello all. I've simplified the opening post as I don't think we need to keep reposting all the links, timelines and so on at this stage of proceedings.

The Observer's original exposé: The real Salt Path: how a blockbuster book and film were ...
First thread: To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film? | Mumsnet
Links to threads 2-16, the other 20 Observer articles and videos to date, Raynor Winn/Sally Walker's statement, our timeline and sources can all be accessed in the OP and first few posts of Thread 17: https://www.mumsnet.com/talk/am_i_being_unreasonable/5403285-thread-17-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?

New posters joining us in the genuine spirit of our civil discourse are welcome. It would be helpful to get the background from at least some of the Observer exposé items before posting.
To all - Please be extremely cautious when it comes to naming or implicating people and addresses not in the public eye or with no direct connection to the story, and around the understandable health speculations, especially where details are unclear or still emerging. Remember, even Hollywood rabbits attract the odd flea. Please do not engage with drive-by scolders who seem to have their own agenda and seek to derail. Avoid @'ing and quoting them as - from experience - this will only encourage them back to the threads. We have done amazingly well together for 17 very interesting, very serious and very silly threads so far. I can't be here as much as I'd like so all help with keeping our discussion walking along in our usual reasonable and respectful fashion is very welcome.

Now three months in, if these threads could wear slogan t-shirts they would be Mark Twain's often misquoted 'The report of my death was an exaggeration'. Applications in writing from correspondents seeking supply parcels of fudge and cider will be tolerated.

Here we are again
Disappointed as can be
All good pals and jolly good company
Strolling round the path
Happy on a spree
All good pals and jolly good company

Never mind the weather, never mind the rain
Now that we're together, whoops we go again!
Whoops, we go again
La-di-da-di-da, la-di-da-di-dee
All good pals and jolly good company

Keep to the path. No saltiness. May the fudge and cider be with you.

Mr Winn was diagnosed with CBD while the pair were walking the South West Coastal Path in 2013.
The couple's coastal walk was detailed in Ms Winn's best-selling book, The Salt Path.
"We are honoured The Salt Path has helped inspire many people get outside and take up walking, including people, who like Moth, are currently living with CBD," Ms Winn said

Thank you, yes I was. I had the impression that there had been consultation with the writer of the medical letters about publishing them. I do think that it wasn’t a good idea for them to be published and not really in TW’s best interests. I actually hadn’t realised that no consent would be required so thank you for that information.

A quick (and narrow) question.

This is from the rebuttal:

"...Corticobasal Degeneration, CBD ... is now more commonly referred to by neurologists as Corticobasal Syndrome, CBS. CBS being the clinical diagnosis which describes the symptoms observed during life, while reserving CBD for the disease observed at post-mortem. From here on I’ll refer to the condition as CBS."

If there is a neurologist reading these threads, could you confirm whether this statement is correct?

Yes @PrettyDamnCosmic no diagnosis in 2013, yet that is what Salray has written and repeated in interviews. This claim being central to TSP story and hugely instrumental in it's financial and literary success, sorry @Vroomfondleswaistcoat more fudge and cider coming :) I too thought the letters needed the permission of the clinician to share @Innermagnolia, Salray says she was advised by the neurologist, when sharing the letters.

Why would a neurologist be advising or be involved with the publishing of the letters?

CBS and CBD according to the PSPA website:

Corticobasal Degeneration (CBD) is a progressive neurological condition. It presents complex challenges, not only to people diagnosed but also to their families, caregivers, and the healthcare professionals who support them.
At its core, CBD involves the degeneration of brain cells caused by the accumulation of abnormal tau proteins. This leads to a range of symptoms affecting movement, which usually begins on one side of the body, as well as affecting cognition. CBD may also affect speech, memory, and behaviour.
You may have also heard the term “CBS”, which stands for Corticobasal Syndrome. Although CBD and CBS are often used interchangeably, they do mean different things, which can get confusing. CBD is a pathology, the thing that is causing the disease in the brain. CBS is a syndrome which is a collection of symptoms. CBD in the brain can show in life as different diseases in life, but most people diagnosed with CBS have CBD causing it, which is why they are used interchangeably.
The purpose of this page is to educate anyone looking for information about CBD, to help improve understanding of the condition and the care and support available.

Also from the rebuttal:

"Firstly, let me address Moth’s health. With Moth’s permission, and on the advice of his neurologist, I am releasing excerpts from two clinic letters, showing he is treated for CBD/S and has been for many years. This is deeply personal information that no-one should ever be forced to share. The redacted sections are for the personal privacy of Moth and the doctors involved."

SW's reference to protecting the privacy of "the doctors involved" implies that the letters name multiple doctors, not just one.

And saying "on the advice od his neurologist" (at the start) and then "the doctors involved" (at the end) might be understood as implying that the neurologist (who advised on what to do about the letters) and the doctors (who wrote the letters) are not the same.

Thank you for that @izzywizzyletsgetbizzywynthomas It is good to have information from a reputable source. I wonder@RainyTuesdaysAndSunnyWednesdays if Salray used the word advice, to imply that the neurologist had directed her too, in the same way as she talks about taking legal advice, if you see what I mean.

@Peladon SW's reference to protecting the privacy of "the doctors involved" implies that the letters name multiple doctors, not just one.

The letters are from the neurologist to a colleague re: Tim

The NHS website has the following info about CBD and brain scans:

Brain scans
If you have symptoms of CBD that suggest there's something wrong with your brain, it's likely you'll be referred for a brain scan.
Types of scan that you may have include:

• MRI scan – where a strong magnetic field and radio waves are used to produce detailed images of the inside of the brain
• PET scan – a scan that detects the activity of the brain
• a DaTscan – to measure the amount of a chemical called dopamine that your brain is making

These scans can be useful in ruling out other possible conditions, such as brain tumours or strokes. MRI scans can also detect abnormal changes to the brain that are consistent with a diagnosis of CBD, such as shrinkage of certain areas. Brain scans are also being developed to show the build-up of a protein called tau. This is associated with CBD.

Which is interesting because the June 2015 consultant letter specifically stated that Moth had had an MRI scan (as well as other tests) in 2011, all of which were negative (presumably for CBD?)

Apologies - you are quite right. Plus looking at one of the letters, I see that it did name multiple (redacted) doctors. Please ignore my post, MWM.

A comment on the reddit feed some months back which I found interesting

I've found that rather strange Australian article, I shared in September, where they had unredacted letters (they don't show them, just quote from them):

The magazine has established the reports were written by neurological consultants at the Betsi Cadwaladr University Health Board in the northern Welsh city of Bangor. They cast doubt over the validity of the couple’s claim that Moth Winn’s ­corticobasal degeneration (CBD) began in 2005 and was pronounced terminal in 2015.

How this Aussie couple became caught up in the literary scandal of the decade

I thought the same as you @Peladon when I first read the rebuttal, I think there was a lot of discussion around the rebuttal way back, with speculation about whether the letters were written by the same neurologist. People have questioned why TW has stayed with this neurologist, despite moving, it does seem @BeguiledBrandy that they can manipulate him to their own advantage.

Thank you @BeguiledBrandy I know there are a number of errors in the reporting, but the Parson's come across as such nice people.

I think it's also worth remembering that this consultant is an NHS worker and therefore their actions are up for public scrutiny and accountability. Any limitations of doctor-patient confidentiality are fast undermined if it is established there is a public interest to investigate. I mean, among the questions that I have asked myself over these past months is how on earth was this diagnosis allowed to continue for 10 years with no observable disease progression?! Is this consultant really a "top dog' as RW described or are they simply not up to the task? Why was a second and third opinion not sought? Are other patients being misdiagnosed? These are important and valid questions.

My understanding is the neurologist wrote the letters and sent them to TW's GP or other doctor dealing with his treatment/physio/pain management etc. TW simply received a copy of the correspondence, which is standard. So both sender (neurologist) and recipient (i.e local doctor) were redacted. Which leads me to another curiosity...

The 2025 letter is addressed to "dear colleague" and it's notable also that the redacted recipient address does not list a redacted name for a Dr unlike the two earlier letters. Instead the first line of address is "The Health Centre". This, and the tone and content of the letter, possibly supports what has been suggested many threads ago that this consultation may well have been directly requested by TW for whatever reason...medical "evidence" to show someone perhaps.

Freshsocks · Yesterday 21:29

Thank you ** I know there are a number of errors in the reporting, but the Parson's come across as such nice people.

Yes, I think they are, but I can understand why anyone associated with Raymoth would be reluctant to talk in public and then have details, not always completely accurate,of their lives splashed across the media. I was curious to see their backstory after reading those newspaper articles about them and their encounter with the Winn/ Walkers and how Raynor spoke of them in The Salt Path.
If you read their online blog and subsequent posts on Facebook and Instagram you see a couple who had worked hard all their life and invested in property who, after two serious back injuries from David’s years as a bricklayer, decided to reevaluate their priorities in life. They sensibly sold up and then bought an apartment ( and I think acted to ensure a stable future for their daughter)as an Australian base that they could rent out while they worked odd jobs while travelling throughout the Uk and Europe, at times in a van.Later they were able to buy another van that they have used in Australia for fours years, travelling, house sitting and working at odd jobs again.
At the time they met Tim and Sally they were based in Australia while enjoying a walking holiday on the SWP but were able to eat out and stay with friends or in paid accomodation when it suited them, although the majority of their time they slept under canvas, by choice. Jo even had her roots done ( what a crime!) shortly after meeting Tim and Sally.
Is it any wonder Raynor was so envious of them and (as is her style) decided to present them in such a derisory manner?

CBD? MS? A psychological condition? Parkinsons?

The mystery remains, but a definitive diagnosis of classic CBD seems a stretch at this point in time.

From somebody who has met Moth

Damp Squid?

@Aussiebornandbred Is it any wonder Raynor was so envious of them and (as is her style) decided to present them in such a derisory manner?

Thank you for looking into the Parsons properly and sharing their story. I wonder if they will feature in the documentary on Sky that is due to be aired in December?

That was basically my question previously. If I had been diagnosed (with however many caveats and 'bearing in minds' etc) something that I could easily Google and discover to be terminal with a prognosis of not many years - but I continued to thrive, I would be questioning the original diagnosis and asking for more tests. I mean, if I didn't have what I had originally been diagnosed with - what did I have? What was the prognosis for that? Should I be planning that round the world cruise or should I not even bother shopping for Christmas?

It seems that the Walkers took the original diagnosis and ran with it without seemingly any intellectual curiousity as to its non-progression.

Bear in mind those with diagnosed terminal illness may be entitled to enhanced benefit payments, i for one would certainly not put it past the Walkers to "game" the system. Would also be interesting to know what grants they claimed for their "farming " business?

And if he had been diagnosed with something terminal before they lost the house - would they not have had some form of insurance on the mortgage to cover such eventualities? I know when I last had a mortgage I had life insurance in with the mortgage to cover the repayment in the event that I died or became terminally ill and unable to work.