Can long-distance trails be a remedy for PD? That is the lingering question after my previous personal experiences on the Vicentina trail in Portugal and the Camí de Ronda in Spain. In both cases, a dramatic start in the first week transformed into a remarkable improvement in my PD symptoms. Reetpetitio tipped me off about the release of "Landlines," the latest book by Raynor Winn, which I have since read. In her two previous bestselling books, "The Salt Path" (2019) and "The Wild Silence" (2020), she described their long-distance walks as acts of desperation after losing their home and her husband Moth receiving a severe diagnosis, with a similar improvement during the hike. However, at that time, as a "healthy" reader, I was not aware of the impact and significance of this.
Since my own diagnosis three years ago, I read the new book, "Landlines," with a completely different perspective than her previous two books. I realized that Moth and I have a similar type of disease with a poor prognosis. Not entirely comparable, as he has rapidly deteriorating Corticobasal degeneration CBD (a form of Parkinsonism), and I have PD, for which at least there is levodopa medication. Raynor Winn and her husband Moth are embarking on another 1600 km journey, from North Scotland to the South Coast of England, but this time as a last attempt to reverse the severe deterioration of his symptoms. Without giving too much away, a miracle unfolds!
Exercise is essential for PWP, but there is more to it here. In addition to physical activity, stress reduction, improvement of mental well-being, social interaction, a clear purpose, connection with nature, long-term outdoor life with exposure to sunlight, stimulation of the senses, fresh air, may also play a role. Now I am very curious if any of you have similar experiences and would like to share them here.
Perhaps this is also an encouragement to plan and walk a long-distance trail yourself! If that is no longer possible or not your thing, by reading "Landlines," you can still join in on a path full of hardships in a breathtaking nature. It also shows the uncertain future path of this time and is a statement against the destruction of biodiversity.
Highly inspiring, recommended for the new year!
Landlines
The Remarkable Story of a Thousand-Mile Journey Across Britain
By Raynor Winn
Pegasus. 320 pp. $27.95
Written by
Esperanto
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I thank you, Esperanto. My experience is different, but quite similar !
I have been diagnosed with PD 6 years ago, but my symptoms (tremors) were there much before (approx. 10 years ago).
I am now 67 years old and since my retirement (2 years ago), we have been spending more than 2 months in the winter time (basically January and February) in the Canaries island in order to benefit from longest sun exposure and warmer climate than cold Europe.
Technically, I am not performing long distance trail, but quite similarly long walking hours : about 4 to 5 hours walking everyday along endless beaches, with occasional dip (ocean temperature is a little cold around 18°C).
I see much similarity with long distance trail : long walking hours, excellent sun exposure, a lot of fresh air and basically a stressless life. And the result is excellent !
Honestly I cannot state that all my symptoms have gone, as I still face tremors and occasionally tiredness, but an enormous "feel good" sensation, which is priceless !
I strongly advise those who have the opportunity to largely expose to the sun and make reasonable outside physical exercise such as walking, cycling or swimming.🙂
That’s a lovely post mate, I have really bad dystonia when undermedicated and the world looks to be a different place when you’re writhing uncontrollably around. When it’s bad, I just want to die. I know that sounds dramatic and negative but it’s true. No walk in the world would divert my attention from the awfulness of this aspect of PD. When I’m feeling good, a walk around the coastline sounds like a super idea.
If you have a chance, just go in the sun and walk !
I know it is inappropriate to say that in the UK winter, but if you can afford a 4 hours flight, just go to Canary island for one or two weeks, or more and you will see much difference in your status. I wish you all the best !
Ha! I wish: but I’m staring out at a Norman Church in the grey drizzle of England (but I’m in a warm and cosy Edwardian house with many original features). I’ll have to offset these factors via a roaring fire and good company!
Very difficult Jeeves…. but maybe the combination of anti-stress vacation with PD care, hiking, and walking could be an option. I was in the vicinity of the 'European Parkinson Therapy Center' in Dario Boario Terme, near the beautiful Lake Iseo and the Bergamasker Alps in northern Italy. I would definitely go there myself if my situation deteriorated so quickly. They offer a professional PD therapy program, along with a stunning hiking /walking area, swimming opportunities, and delicious local cuisine. Probably May and June are particularly good times to go, as there is a high chance of favorable weather conditions. ☀️
Hi Jean-Louis, thank you for sharing your experience as a fellow sun seeker and hiker. While it's true that not all symptoms disappear, the "feel good" sensation you described may indeed be an essential factor. It acts as a lubricant that gets the machine sputtering back into motion, and gradually allows the engine to run smoother and smoother!
Do you mean that you have been diagnosed with PD for more than 10 years? Then this story should resonate with you even more. When Moth finaly could barely walk last year, after his diagnosis in 2013, he embarked on this journey!!!Initially, his doctors had given him a maximum lifespan of 6 years, so the fact that he had persevered for so long was already a miracle. Reading the book gave me hope and a tremendous boost. But it requires hard work and is a super achievement!
Moth was not idle either, every day on their premises he was pruning the trees, working in the garden, and walking the dog. It proved to be insufficient. He developed balance problems and could hardly walk up the hill for a short stroll. To then embark on a challenging category long-distance trail of 450 km and extend it four more times until they were back home in Cornwall is an unprecedented achievement. But it means letting go of everything and walking all day in all weather conditions, camping outdoors…
I am a wildlife photographer and I find spending time in the fresh air hiking, listening and looking for the beauty in our natural world the best medicine for me. I understand the benefits of high intensity workouts, but for me, long walks work best.
I love this post! Thank you. I am a meditator and just posted on how meditation might help gut-micro-biome, so my husband with PD and I were considering upping our time spent meditating . But we are also hikers - and have been considering whether to take on travel this year. So, the inspiring thought of a trip to a beautiful sunny hiking destination is tempting! And I just looked and Landlines is available at our library. Thank you 😊
"Rucking" is the act of going for long walks while wearing a heavy backpack. That's kinda what she is doing. I use a treadmill. But I use a backpack with 30# of weight. I vary the elevation and speed mainly the prevent boredom. I'm looking forward to trying this outdoors once the weather is better. I live on a twisty one-lane road in the boondocks. So far I haven't had the guts to try it outdoors.
This is a brilliant post. Thank you! Diagnosed almost 3 years ago, and a keen hill walker, I have made sure I get out in the Scottish Highland mountains every month. I've always said that after a day in the hills I feel great for 3-4 days afterwards, and this also appears to be the case for my PD symptoms.
I'm lucky to have these beautiful places on my doorstep (even if the Scottish weather doesn't always make it a pleasant stroll🤣). I also realise that for some, this isn't available depending on how PD has progressed. I'm grateful that I still can get out hiking, and maybe it's helping my progression too! Will definitely get that book! Thanks again!
I can still walk (medicated)...I wonder if doing something like this would make medication reduction necessary....probably....unmedicated makes walking impossible... foot dystonia...
Initially, you will likely need more medication rather than less. Engaging in hiking these trails over time can contribute to better symptom control. This, in turn, can reduce the need for levodopa medication. In my case, I found that the turning point usually occurred after about a week. The medication requirement may be adjusted after some time, but the timing and dosage will vary significantly on an individual basis. I follow the personalized medication system, but others swear by regularity.
Thank you Esperanto! I forgot to put this book on my Christmas list and indeed forgot all about it! I will buy it as my Christmas present to myself😊. Very happy to hear that it's so inspiring!
If anyone is trying to get moving again but is hampered by dystonia and other movement disorders, try RAS therapy - wireless headphones playing from a soundtrack on your cell phone .
For fast beach walking I play a walking-on-gravel soundtrack available off YouTube but speed it up. This way I walk very fast such that my wife can't keep up! Other times I just play music I like and it still helps.
Initially I tried bone conducting headphones but found that over-ear is best because is gets the beat through into my PD-addled brain. Oh and walking bare foot in the wet sand helps too. Also walking poles help get the arms swinging. To start with you may them hard to manage but persevere.
I've tried playing binaural and rife soundtracks that are supposedly for PD but not sure that they help. Does anyone have any positive experience with this?
In the US I came across this interesting initiative from PasstoPass a non-profit organization that offers multi-day supported backpacking trips for people with Parkinson's Disease. Led by individuals with Parkinson's or close connections to PD, the trips are designed to accommodate the physical challenges of participants. Support hikers and pack llamas are provided to ensure a positive hiking experience. PasstoPass operates on donations and the benefits of their hikes include improved symptoms, boosted morale, and lasting friendships. Join them on their 2024 hikes along the Pacific Crest Trail and the John Muir Trail.
I have contacted them but I think I'm not ready for this yet...I've been trying to get Rytary dosage to work. Seems I get either too much ( I get compulsive, and dyskinesic, and lose weight), or too little, no motivation and other symptoms. I tend to think the lower level is better, but takes a lot of willpower to get going...and I need to build up more muscle. So I guess it's step by step...
Thank you for this sort of information. Could you say a bit more about how you support yourself, for example in preparing for exercise and during exercise. I ask because it’s the main issue I’m encountering in my running, where it’s becoming obvious that “dopamine dips” are occurring more often. Trying to “fuel up” to take account of this is not easy.
The basis of my hiking training, in addition to a daily 15 minutes TV exercise program and also 15 minuten Qi Gong for flexibility, coordination, balance, and breathing, is to take long walks with my dog through the vast forests near our house in France. Every other day. I usually walk at least 10 km, taking a different route each time, including a portion without a trail. It is the highlight for my dog, but it poses a risk for me due to the higher chance of falling. That's why I always carry hiking poles with me. The next day I usually go on a shorter brisk walk myself. The muscle recovery that John Pepper always emphasizes is necessary for me because my muscle strength in my feet and legs has greatly diminished due to my peripheral neuropathy (PN). This additional handicap also means that I have no feeling in my feet apart from a burning pain, which increases the risk of injuries (stones in your shoes, blisters, loose nails). It forces me to be more cautious and careful, which is not in my nature and is not helped by PD.
The unbiassed allows me to suddenly get the idea to go on a 2 to 3-week journey usually in spring and autumn. I look for where the sun shines, decide whether or not to bring a tent depending on my condition, and choose a route to go by car or bus / train. Only for the Azores will I have to abandon my flying shame…
Since I was young, I have always preferred to do these kinds of trips alone. It is highly discouraged for people with Parkinson's to do so, you need a buddy (!), but it has a much more positive effect on my PD. The fact that I am free and socially stress-free, not having to consider whether the other person is enjoying themselves, works wonders. Even with my partner, we only do day trips together. The book "Landlines" does encourage me to go on a long journey of 1 to 2 months again, but I will plan it better this time. Perhaps I even will walk (short) parts of it with a family member / friend or a fellow Parkie occasionally 🙂
While searching for other hiking travel books related to PD, I came across a unique and informative book called "On The Trail With Parkinson's Disease". This book is written by Elizabeth Grover, who has been living with PD for a long time and has been an avid long-distance hiker, even before her diagnosis. Elizabeth is a strong advocate of exercise and believes that her active lifestyle has helped her cope with PD for over 25 years. The book offers practical advice and insightful discussions on basic principles of life that can be applied to hiking, living with Parkinson's, and life in general. Some of these principles include taking one step at a time and the importance of having a hiking buddy.
Michel Berry embarked on an incredible journey across France, covering nearly 4,000 kilometers on foot. Divided into 199 stages, each averaging 20 kilometers, this extraordinary feat aimed to raise awareness about Parkinson's, he has been living with for five years. Michel Berry received support from the association Mission Parkinson Ensemble, who assisted him in organizing and carrying out this challenge.
Starting from Aïcirits in the Pyrénées-Atlantiques on March 1, 2023, Michel Berry arrived back in his hometown on October 7. Throughout his journey, he stayed with local hosts, showcasing the hospitality of the local PD communities he encountered. Online he collected donations for research.
Michel Berry's determination and willingness to undertake such a feat highlight his belief that PD should not hinder one's ability to live a fulfilling life. By engaging in his beloved sport of hiking, he demonstrates that physical activity, like walking, can have both physical and mental benefits. His journey serves as a positive and inspiring message for us!
Perhaps an idea for a Parkinson's 'Tour de USA'? If you take the border states, it would be approximately 13,000 km. At Michel's pace, you would be back home in about 2 years. You have another purpose in life and America is first again! 🇺🇸😀
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