Raynor Winn

[jeeves19]

Is an English woman whose husband was dxed with Corticobasal Syndrome some years ago. She has two books out. The first deals with his diagnosis and subsequent loss of career and then a walk around the South West Coastal Path. The second - recommended by Esperanto to me - is called Landlines and is her writing about their walks in Scotland and and then down the Penine Way into England. The latter was a huge walk, no idea how Moth (husband) did it with that disease and no drugs. But here’s the thing: he had a DAT scan following the walk and then went into the consultant’s office.

‘How are you feeling?’ said consultant

‘Fine. Best I’ve felt for years’

replied Moth

‘Why do you think that it is?’

‘Because I’ve just walked a thousand miles and talked to loads of people on the way’.

‘Well your new DAT scan is showing activity that - based on our current understanding of Parkinsonism - shouldn’t be happening. It’s lighting up like a Christmas Tree’.

I’ve paraphrased this as my e-book wouldn’t let me cut and paste. Interesting though isn’t it?

[BootsOn]

Anyone want to meet me in Hunstanton? We can start with an easy meander along the very beautiful North Norfolk Coast Path!

[jeeves19]

Bit far from Brum ! But when I was a boy, my family owned a cottage in Blakeney. Many fond memories of that part of the world. Enjoy

[BootsOn in reply to jeeves19]

Sorry, didn't explain myself properly! I don't live in Norfolk. A few years ago I rented a holiday cottage in Blakeney and fell in love with the place and the coast path.

[jeeves19 in reply to BootsOn]

Might have been my family’s cottage! Who knows? 😂

[BootsOn in reply to jeeves19]

Nice thought but this was a new build, albeit about 10 to 15 years previously.

[Buckholt]

the fist book, The Salt Path, is superb! Recommended. They’re making a movie about it with Gillian Anderson

[Bolt_Upright]

Raynor Winn on The Salt Path + The Wild Silence

youtube.com/watch?v=RfyCJvi...(Not working as expected?)

[Hope-full1970]

This sounds really interesting. I would love to read Landlines. A book I have read recently was one I couldn't put down. It's called the Long Walk by Rawicz. It's not about PD but about the will to live and human endurance. It was a true story about a 4,000 mile trek to escape an unjust imprisonment for freedom. Very inspiring!

[Rebtar in reply to Hope-full1970]

Suggest reading Salt Path first.

[Dpeachey in reply to Hope-full1970]

I agree, Hope-full1970, The Long Walk by Slavomir Rawicz is a hard book to put down. I hate to disappoint you, but although there are some elements of truth in his story, it is mostly a work of fiction. Rawicz had the aid of a skilled British journalist, whose name I can’t recall, and together they wrote this masterpiece of a story that really draws you in. I read that book to our 12 children many times as they were growing up, and we never tired of hearing it. The Long Walk was out of print for many years, but a new printing came out in 1997 with a bit of background in the cover pages. Amazingly, the four guys who made it all the way never met up after parting ways in England. A plausible movie based on the book came out in 2010, called The Way Back, but as usually happens, it went wayyyy of script, much to my chagrin. Watch the movie and read the book, they’re both good standing on their own.

[Hope-full1970 in reply to Dpeachey]

That's very interesting. It is disappointing there is alot of fiction in it but I still really enjoyed reading it. Thanks for the insight.

[Gallowglass]

My library has the audio book! Can’t wait to listen!

[jeffmayer]

Yes I've I've readIt lfaccinating

[spw1]

The Landlines is her third book and I happened to pick it up first. It is an amazing story. What is interesting is the very decision to do that walk at all given the description of his health at the beginning. The couple ran a marathon in 2023! The book reminded me of Dead Man Running just in terms of story line. Kevin, the author of that book, also put his body through extreme physical stress running ultra marathons after undergoing chemo for PCA. One will never know if the running itself helped his cancer to be kept in check.

My husband and I had a similar idea of getting out in the nature to walk a lot when other exercise became difficult. So, we did the Prostate Cancer March for Men two days after his first chemo. But sadly, it got more difficult after that. Walks became shorter until he could not do anything more than get to the car. What I would say to all the PCA sufferers and carers here is to get out in the nature as much as you can, walking, driving, cycling, running, boating, ... any time outdoors will help you both. When things got difficult a year ago, I would drive my husband to the lakeside cafe just to sit outdoors. He could not use their chairs but we had a rollator with brakes that became a seat. It was higher than a chair and made it easier to get in and out of. After his passing, I am doing the walking alone when I can.

[jeeves19]

Thanks for sharing your experience. Very moving 😕

[Annieartist]

Ive listened to the first book the Salt Path - it is inspiring and - must read the others -makes you realise what we can do to improve our condition ( though often and confusingly not the same thing for everyone!!!)

[jeeves19 in reply to Annieartist]

But then who’s prepared to walk 500 miles in all weathers?! 🙏😂

[jeffmayer]

How's the DBs I get my pump fitted finally thurs

[jeeves19 in reply to jeffmayer]

Alright thanks Jeff. Excellent for dystonia and energy, less impressive on the Bradykinesia. I have no tremor.

[Reetpetitio in reply to jeeves19]

Great news that the dystonia is better!

[Rebtar]

Fabulous book. Inspiring. Highly recommend. I haven't gotten to Landlines yet.

Their first walk was motivated by becoming suddenly homeless after losing their home and all their savings except for a tiny monthly stipend. Takes a huge motivation or willpower, I guess. No easy path. Husband added years to his life by doing this...

The decision went kind of like this...

Packing up all belongings to get evicted.

Wife sees book about hiking that trail.

Police come and evict them.

Now what are we going to do? Nowhere to go!

Wife: we're going to walk....

So they gathered basic camping gear, and the book...and off they went.

That may be simplifying a bit, but it's pretty much what happened.

Amazing.

[jeeves19 in reply to Rebtar]

Thanks Rebtar

[AndyMu72]

Just finishing Landlines right now. Wonderful story of love and the human spirit, not to mention fascinating to see Moth’s symptoms improving as they hike. Raynor writes beautifully about the landscapes and wildlife they encounter. Need to go back and read previous book, Salt paths now!

[jeeves19 in reply to AndyMu72]

Thanks Andy!

[Reetpetitio]

Fabulous - I hadn't actually realised he had Parkinsonism. The Salt Path is hands down one of the best books I've ever read. No 2 was also very good. Keep forgetting to buy the third - that will be a treat. So good to hear that Moth is doing well! He is incredible.