The Salt Path: Reading a book called “The... - PSP Association

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The Salt Path

Reading a book called “The Salt Path” by Raynor Winn, which is the true story of a couple who after losing their house, home, business and livelihood, (-everything in fact,) then find out that he has CBD. They then decide to walk along the coastal path around Devon, Cornwall and Dorset while he is still able to.

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CLP71

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raincitygirl5 years ago

This sounds familiar... Someone else in the community read this book and commented (unless I'm experiencing deja vu!!)

Are the insights valuable??

Anne G.

Kevin_15 years ago

Thanks for flagging that. My Liz had it as an audio book and thoroughly enjoyed it. Audible flagged it as him having dementia. I listened to the first few minutes. Beautifully written.

kenh15 years ago

Just ordered the book on Amazon. Look forward to the read as I have done some of the walk and my wife has CBD.

Inarticulate5 years ago

There was an article in the PSPA magazine (recent copy) on this too. It was really interesting. The decline came particularly when their lifestyles were sedentary. The more active they were the more there seemed to be a noticeable slowing of the deterioration.

kiwitaramerlin5 years ago

it seems to be correct . The more i take my husband out the more active he is.

kenh15 years ago

WARNING. I replied that I had ordered the book on Amazon I had failed to read the small print and received a notebook to make notes in when reading the book. I have now found the actual book also on Amazon and ordered that. Will use the notebook to compare my wife's journey with CBD with that of the author.

Just received the proper book this morning and read the first chapter as Kevin said, beautifully written. Looking forward to a good read.

Richard335 years ago

Hi,

Can you let us know whether it is depressing or not. Would like to read it with Ruth but do not want to depress her.

Toddet5 years ago

I did read this, it wasn’t depressing. I spoke to our A-typical Parkinsonism contact Jade Donnelly who commented about the book in the PSPA mag. She agreed that exercise can help, but early on in the illness(es). The approach the couple take is unique as is their circumstance. Hope this helps.

Heady5 years ago

Just finished reading this book, on holiday. It was a great read. Having walked a lot of the path with Steve and I live just by the coastal path, but further up from Minehead, it bought back lovely memories. I fully agree that intensive exercise is something that is needed. We only ever use a small part of our brain, could retraining it, help? I know this would cost a lot of money, but all the money that is ploughed into other diseases, surely they could spare some for us, rather than Steve's consultant's attitude, come back when the death certificate needs signing!

I found the book, funny, sad (but only in small places, because I could read between the lines!) and so full of hope. Does anyone know if Moth got his degree and how he is now?

Lots of love

Anne

Toddet in reply to Heady5 years ago

Hi Anne, again just replied to Ken. The article in the UK PSP/CBD mag did say that Moth got his degree, but didn’t add anything as to how he is now.

Best

Helen

kenh15 years ago

Just finished the book which is a very good read. But I do not recognise his symptoms as those of my wife who has CBD.

It would be interesting to get an opinion from a neurologist who has specialised in CBD.

Toddet in reply to kenh15 years ago

Ken I don’t know if you are in the UK, but the latest PSP/CBD magazine had an article with the couple in the book. As I had also tried to read it, I spoke to our PSP physio who works with our neurologist. There thoughts were that exercise is always good, but they wouldn’t recommend someone coming off their treatment. Also the chap in the book had the early stages of the illness. I know that my husband was capable of far more in the early stages and that he continues to go to Pilates, walk the dogs (slowly) and also can potter round the garden. My husband is always better when we are doing things and we have had that advice and not the advice suggested in the book (ie don’t do anything etc). Hope that helps a little.

Best wishes to you .

kenh1 in reply to Toddet5 years ago

I also read the article which prompted me to read the book. Prior to diagnosis my wife and I did a lot of walking and one of our last walks was the Tarka trail in Devon, over Exmoor and then down the coast from Lynton to Barnstaple. We were walking on average 12 - 16 miles a day. Most of our holidays were walking holidays and in 2002 my wife walked the whole length of Hadrian's wall with a friend of hers.

The reason I'm sceptical is that rather than walking improving her condition, the symptoms inhibited her ability to walk. First signs were she struggled with stiles, then with steps and cliff tops. She lost spatial awareness, developed an alien limb.

She had a UTI walked into hospital. She was in hospital two weeks and came home on a stretcher never to walk again.

We are now in the latter stages which were horrifically described in the book.

Be assured though difficult it is not as bad as the neurologist predicted.

I don't dispute that excercise is important and helpful. I just don't recognise the symptoms described in the book indicate he had CBD.

Toddet in reply to kenh15 years ago

Dear Ken

So sorry to hear that your wife is in the latter stages.

Sending hugs

Helen

kenh1 in reply to Toddet5 years ago

Thank you Helen. Doreen died very peacefully this morning.

The Palliative care team, District Nurses, carers and her GP have been absolutely brilliant.