domparisien
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- Time of past OR future Camino
- Frances Spring 2022
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Do you have an option to walk with someone you trust to have look out for your wishes? It seems clear that most people who have responded here would not feel comfortable not calling for help.
Make that most pilgrims/walkers do not participate on this forum.Many pilgrims/walkers do not participate on this forum
Hi, Dominik.
I'm a nurse in the US, so the following observation is from a US perspective. What you *need* is a nurse or doctor in Spain to tell you how Spanish law works.
Anyway, if I were to stop for you as a Good Samaritan ( and believe me, if you're screaming or unconscious, I would absolutely stop), the * only* thing that would allow me to wait with you without calling emergency services would be a *visible* medic alert bracelet that says you have seizures. If I can't see that from just looking you over, then I *have* to call, or risk being sued for negligence (even as a Good Samaritan). If I dig in your pack, I could be accused of stealing.
Spain mileage may vary....
Certainly not! I agree with you that the note is not an appropriate way to manage this situation!I am surprised that this note in the pocket would work in Canada. Do Canadians check for notes in pockets before they alert medical assistance?
BUEN CAMINO!!! and take it slowLittle unsure where the best spot to post this is (Frances or Live on the Camino? Also, this is my first post - whew!).
Hi, I’m Dominik! I’m on the Camino Frances doing my first Camino and I’m currently in Pamplona (started in Saint-Jean-Pied-de-Port). I’m disabled, travelling alone, and I have chronic daily pain and experience some violent convulsions and blackouts. You might spot me on the road wearing a helmet (I wear it when I’m experiencing especially high pain/more likely to collapse). If you happen to find me unconscious on the road please don’t call an ambulance. You can just put something under my head until the convulsions stop. It can look pretty scary and I’ll often scream while convulsing - that isn’t unusual for me, so please don’t panic. I’m not responsive during these episodes, so don’t be concerned if I don’t answer. I carry a similar note in my wallet in case people check for my identity. Don’t hesitate to say hello if you see me! Also, as a lot of folks have posted, it’s quite busy on the Frances!
Bon camino and enjoy your walk.Little unsure where the best spot to post this is (Frances or Live on the Camino? Also, this is my first post - whew!).
Hi, I’m Dominik! I’m on the Camino Frances doing my first Camino and I’m currently in Pamplona (started in Saint-Jean-Pied-de-Port). I’m disabled, travelling alone, and I have chronic daily pain and experience some violent convulsions and blackouts. You might spot me on the road wearing a helmet (I wear it when I’m experiencing especially high pain/more likely to collapse). If you happen to find me unconscious on the road please don’t call an ambulance. You can just put something under my head until the convulsions stop. It can look pretty scary and I’ll often scream while convulsing - that isn’t unusual for me, so please don’t panic. I’m not responsive during these episodes, so don’t be concerned if I don’t answer. I carry a similar note in my wallet in case people check for my identity. Don’t hesitate to say hello if you see me! Also, as a lot of folks have posted, it’s quite busy on the Frances!
Yes, this. As a nurse, I can totally understand where you are coming from and your desire not to end up in the hospital for a condition that is part of your normal life. I agree with others - make your medical information as visible as you are comfortable making it. Medic alert necklace/bracelet in addition to some sort of medical note that is not buried within a pack or wallet. Or even a visible note that directs the responder to more information. But your best bet is to walk near someone who is willing to be your advocate while on the Camino. Even if that is someone different every day - letting the people around you know about your condition in advance is really the only way to maybe get your wishes honored. Beyond that - your best bet is to simply hope you wake up before the ambulance arrives and/or before you are transported to a medical facility. But the fact is, most people would be uncomfortable with not calling for help. Especially if they don't know you and your medical history well. Even then - most people are more likely to panic and give in to their urge to call for help - especially if your seizure last longer than they are comfortable with. Wishing you a buen camino though - and I hope it goes well without any incidents!Do you have an option to walk with someone you trust to have look out for your wishes? It seems clear that most people who have responded here would not feel comfortable not calling for help.
Good point as he didn't mention any walking partner able to join him.But your best bet is to walk near someone who is willing to be your advocate while on the Camino. Even if that is someone different every day - letting the people around you know about your condition in advance is really the only way to maybe get your wishes honored.
Hello Dominik, Thank you for sharing this. I am very moved by your post as my brother in law, Nicolas de Rauglaudre, with an amputated leg has walked 4200 kms on the caminos (often on his own) He suppered terrible phantom pains and also bad blistering and sores from his prothesis.Little unsure where the best spot to post this is (Frances or Live on the Camino? Also, this is my first post - whew!).
Hi, I’m Dominik! I’m on the Camino Frances doing my first Camino and I’m currently in Pamplona (started in Saint-Jean-Pied-de-Port). I’m disabled, travelling alone, and I have chronic daily pain and experience some violent convulsions and blackouts. You might spot me on the road wearing a helmet (I wear it when I’m experiencing especially high pain/more likely to collapse). If you happen to find me unconscious on the road please don’t call an ambulance. You can just put something under my head until the convulsions stop. It can look pretty scary and I’ll often scream while convulsing - that isn’t unusual for me, so please don’t panic. I’m not responsive during these episodes, so don’t be concerned if I don’t answer. I carry a similar note in my wallet in case people check for my identity. Don’t hesitate to say hello if you see me! Also, as a lot of folks have posted, it’s quite busy on the Frances!
Dominik's situation raises the general question of how to respond to an unconscious person whose health history and overall situation is unknown. Taking a first aid or, better yet, an advanced first aid course can prepare one for many situations - I've taken several classes over many decades and on several occasions have put the training to good use - it mostly provided me the confidence to protect and support the victims while awaiting the EMT's, but a few incidents were in wilderness situations where we were on our own.
One also might consider carrying a satellite emergency communicator like a Garmin InReach, etc., which can summons help from remote places.
Thanks for your story, you maybe the person during an episode that brings the best out in a stranger, so fear not your illness will create many Camino miracles for others I am sure. God bless.Little unsure where the best spot to post this is (Frances or Live on the Camino? Also, this is my first post - whew!).
Hi, I’m Dominik! I’m on the Camino Frances doing my first Camino and I’m currently in Pamplona (started in Saint-Jean-Pied-de-Port). I’m disabled, travelling alone, and I have chronic daily pain and experience some violent convulsions and blackouts. You might spot me on the road wearing a helmet (I wear it when I’m experiencing especially high pain/more likely to collapse). If you happen to find me unconscious on the road please don’t call an ambulance. You can just put something under my head until the convulsions stop. It can look pretty scary and I’ll often scream while convulsing - that isn’t unusual for me, so please don’t panic. I’m not responsive during these episodes, so don’t be concerned if I don’t answer. I carry a similar note in my wallet in case people check for my identity. Don’t hesitate to say hello if you see me! Also, as a lot of folks have posted, it’s quite busy on the Frances!
Consider placing the note in multiple visible locations (on the sleeve/shoulder of your shirt, exterior of your pack, or shoulder straps) as you may be in any number of positions when someone comes by. Maybe augment your note with a big yellow smiley face so it's more visible and implies there is no need to panic.Hi @SabineP. That’s a very fair question (and I’m realizing I omitted a line in my post). I have a copy of it also in the top pocket of my backpack in a plastic bag.
The note is in French, English, and Spanish. It’s rather long in three languages so it wouldn’t fit in just a small card.
Thanks!
Oh no, what happened? Hope it's not too serious and you have a speedy recovery.Hi Dominik, so sorry to read that you got injured, yet glad to read that people stayed with you until the ambulance came.
Sending you positive vibes and may the Camino continue to provide Get well soon!
Did I miss a post on this thread??Hi Dominik, so sorry to read that you got injured, yet glad to read that people stayed with you until the ambulance came.
Sending you positive vibes and may the Camino continue to provide Get well soon!
European here. If I see somebody having a medical problem in the middle of nowhere I absolutely do call an ambulance. No way I’m going to dig in their pockets or backpack or anywhere else in their stuff. I think the only way you get people not call the ambulance is by having a friend or walking buddy who stays with you during the seizure and can tell what’s happening. Even then I wouldn’t guarantee they would listen. The same about prints on your clothes: could be a thrift store find, could be a joke, I wouldn’t risk somebody dead because of a print on their t-shirt.Hi @SabineP. That’s a very fair question (and I’m realizing I omitted a line in my post). I have a copy of it also in the top pocket of my backpack in a plastic bag.
The note is in French, English, and Spanish. It’s rather long in three languages so it wouldn’t fit in just a small card.
Thanks!
Agree. something on the outside of your pack or on your shirt would be helpful.@domparisien welcome here on this forum!
Thank you for being so open about your health and how we should react when you are experiencing such a convulsion episode.
I do not want to criticize you but would a small plastified card attached to your pack not be better than only the note in your wallet?
Just an idea. And did you also translate the note into Spanish?
Buen Camino and stay safe!
No - I was looking for one though! But I did find an updated post from him on Facebook Camino de Santiago 2022 page. He had a couple falls and minor injuries and some helpful pilgrims stayed with him until the ambulance arrived. He seems to be doing well though. He was resting at the time of his update - but that was the 16th so he may be walking again by now.Did I miss a post on this thread??
No - I was looking for one though! But I did find an updated post from him on Facebook Camino de Santiago 2022 page.
But then, the walking companion would have to be very familiar with the particular medical condition and might also miss the signs of a heart attack or other serious medical event, if he or she were not medically trained. And yet, I wouldn't want to prevent someone from walking as a pilgrim because of my decisions about their medical condition. There are many simple monuments along the pilgrim routes to those who died while walking, and some may have chosen not to just wait for death at home. Groups like that started by the authors of "I'll push you" may be one answer to this dilemma.My first thought when reading the initial posting was along the lines of many - I am unlikely to go through pockets and wallets and better to have the note in a visible position. Now, I'm not sure if I would pay attention to it even if it was visible.
I understand and respect OP's desire not to have a lot of fuss and unnecessary ambulance calls for a routine and non-threatening occurrence in their life. And, in general, I agree that they should be in charge of their medical decisions. That said, if I were to come across them unconscious on the path with their helmet on, and their note visible, I have no way of knowing if they are unconscious because of their disability or because they've suffered a cardiac arrest. I assume that their disability doesn't render them immune from all other potential causes of unconsciousness. I would imagine myself blithely going on my way having read the note when, in fact, they'd had a heart attack and never received medical attention because everyone read the note and walked on. I'd imaging how I would feel when I learned of their demise. Then I'd call for help.
Having a walking companion who can speak for you is probably the best route to the desired outcome.
I was remembering when OP saidBut then, the walking companion would have to be very familiar with the particular medical condition and might also miss the signs of a heart attack or other serious medical event, if he or she were not medically trained. And yet, I wouldn't want to prevent someone from walking as a pilgrim because of my decisions about their medical condition. There are many simple monuments along the pilgrim routes to those who died while walking, and some may have chosen not to just wait for death at home. Groups like that started by the authors of "I'll push you" may be one answer to this dilemma.
and thought their blackouts tend to be prefaced by violent convulsions. If I come across an unconscious person I have no idea what caused it. If someone is walking with them and is familiar with the person and sees violent convulsions leading to a blackout, they are likely to see the unconsciousness as a typical result of the disability and can reassure others. On the other hand, if they see their companion just drop unconscious without the typical convulsions, they can recognize it as likely something else. And being with the person, they will have seen the lead up. They are also more likely to be able to distinguish the typical convulsions from other pre-blackout activity that might indicate something else is going on.experience some violent convulsions and blackouts
Or there's convulsions followed by blackout followed by something else and non medics never notice the difference.I was remembering when OP said
and thought their blackouts tend to be prefaced by violent convulsions. If I come across an unconscious person I have no idea what caused it. If someone is walking with them and is familiar with the person and sees violent convulsions leading to a blackout, they are likely to see the unconsciousness as a typical result of the disability and can reassure others. On the other hand, if they see their companion just drop unconscious without the typical convulsions, they can recognize it as likely something else. And being with the person, they will have seen the lead up. They are also more likely to be able to distinguish the typical convulsions from other pre-blackout activity that might indicate something else is going on.
I'm very glad you had a successful pilgrimage.Ouf. So, my sincere apologies to everyone here on several fronts. I didn't keep checking this as I walked, and it's only now, about a year later, that I'm seeing all the replies and the concern and suggestions.
I successfully made it to Santiago, where my wife joined me, and then we walked together to Finisterre. Walking alone (at least up to there) was always the point as I had never travelled alone before and for folks who live with disability autonomy is often deeply important. So doing the journey with someone close to me was something I deliberately avoided and was necessary.
That said, my wife was actually working remotely in France while I travelled, with phone locator information and would check in regularly on progress, health, etc. She was available to meet me in a major medical emergency. I also checked-in with pilgrims I met along the way on a daily basis. The notes I brought were also in English, French, and Spanish.
On a medical level, throughout the walk I discussed my medical condition with just about all the pilgrims around me, so people would know what to expect. I was very transparent about it. I did collapse a few times and needed medical help, but people were aware of my needs and I had many advocates. Folks were really good about it. After some suggestions from others, I also kept an additional copy of my medical information visible. I had assumed the other locations would be enough as people have basically always looked through my wallet for ID in instances where I've collapsed around strangers (this has been consistent over decades).
Also I came to the Camino with walking poles, which helped with stability when I got dizzy
Some things I should have clarified in my original post: I understand, of course, that people would call an ambulance or some form of medical help. Folks always do, and it makes complete sense. I don't begrudge anyone that and didn't really expect them to not actually do it. I've done first aid courses and would do the same. The post was only ever about me and not about how to treat anyone else. The notes were primarily to protect me and inform others that it was an existing condition with enough detail. Often, people (including paramedics) will insist I visit a hospital, even in lesser situations where it's unnecessary, and some people can even become belligerent about it, insisting they know best. So the notes and the post were just an attempt to get ahead of that, even knowing folks would call an ambulance anyway. I could have done much better with those details online. I was also so focused and tired on the trip that I forgot to check back here while I walked (I didn't get any updates on posts?). As some noted, I did a post on another space. I'm sorry if I caused anyone concern.
All that said, I want to reiterate that pilgrims along the way were amazing. Very understanding, very supportive, and those who dealt with emergencies did great and I was grateful for their help. Despite the various troubles, it was a deeply meaningful experience and I would definitely do it again (with some more clarification for others).
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