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Seeking advice on walking the camino with neurodegenerative disease

2020 Camino Guides

CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
Hello, and thank you for letting me join this group.

I am 63 and have a rare progressive neurodegenerative disease called Multiple System Atrophy that causes various symptoms involving the autonomic nervous system (blood pressure, heart rate, breathing, digestion, temperature control, etc.) and movement. I am still able to walk using poles, and I am able to do so at a reasonable pace for about three miles at a time (have done 4 miles on a treadmill), but do not know how long that will be possible. I am planning to walk part of the Camino in early October with my daughter and have been exploring various route and lodging options. I realize time is short, but decided too risky to wait until next spring.

My hope is to walk a total of about 100 KM this trip, walking 10-15 KM (6-9 miles) a day, perhaps more on good days, but my doctor wants me to be conservative and not push myself too much. I will need to take breaks (my thought is to walk 5 KM stretches), and I have to be careful of too much direct sun if warm. October is a good time for me, as getting either too hot or too cold can be problematic (heat is more of an issue than cold). My doctor is also concerned about high elevations. While I would love to see the Iron Cross and/or the village of O'Cebreiro, I think likely will have to skip.

Some friends and family members think I should not attempt this, but I feel a need to persevere. I have assured them all that I will stop if necessary, and my daughter will ensure I do. I originally planned on doing one of the final 100+km stretches, but getting the certificate is not important, so I am looking at other stretches as well. I have been told not to miss seeing Santiago, even if I take a bus or train there at end, and I want to see Finisterre. While I might be able to travel another part of the camino in the future, my condition is progressive, so this may be my only visit there. That said, I like to think I could return.

The English Way has an appeal because I could do the entire thing and I have Irish/English heritage, but there seem to be a lot of reasons to do part of the French Way...more infrastructure, places to stop, varied terrain, other pilgrims to meet, etc. Any suggestions or guidance would be appreciated. My daughter is particularly concerned that we be able to get medical attention should something happen, and I will go to Spain with special traveler's insurance.

Thank you for your kindness in reading this far. Buen Camino!

Sue
 
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SYates

Camino Fossil AD 1999, now living in Santiago de C
Camino(s) past & future
First: Camino Francés 1999
...
Last: Santiago - Muxia 2019

Now: http://egeria.house/
Hi and welcome to the virtual pilgrim albergue of this forum. I think that the way from Sarria to Santiago on the Camino Frances would be perfect for you. In October pilgrim numbers will have quietened down - so there is no bed race and albergues/other accommodation are available every few km/miles. Medical attention wouldn't be a problem either provided you have adequate health insurance/coverage (which might be an issue considering your pre-existing health problems). Level of health care is high in Spain - no need to worry there!
Anything I can do to help, just send me a PM, Buen Camino and follow that call!, SY
 

Albertagirl

Veteran Member
Camino(s) past & future
Frances (2015); Ch. d'Arles: Oloron Ste Marie to Aragones; Frances (2016); V.d.l.P.; Sanabres (2017)
@CalSue
Your choice of the camino frances seems wise to me, as facilities are the closest together there. I agree with SYates that the last section, from Sarria to Santiago, may be the best for you. I walked the camino frances last fall in October and early November. I do not function well in extreme heat and crowds and that time of year worked for me. As a pilgrim, I found that continuity of the route was helpful for me. I had a sense of progressing towards a goal. As a pilgrim with major health issues, you can certainly take a taxi or public transit to complete your day's walk if you decide it is wise to do so at any time. It is good to have your daughter there to assist and I am sure that you will grow closer as you follow the Way together. If you book your accommodation at least a day ahead, you can send your bags forward to your next night's accommodation and just carry what you need for each day, (or get your daughter to carry it). There are many helpful and very experienced pilgrims on this forum. Any questions which you might have will receive responses. I have only one other suggestion at this point. Decide what footwear would be best for you and purchase it as soon as possible, so you can have it well broken in before you leave. Buen camino.
 

notion900

Veteran Member
Camino(s) past & future
>
I am sure you would be fine. There are plenty of facilities and people are kind and willing to help. One thing might be worthwhile, to have a suitably knowledgable person make a small translated information card about your condition, with the official name in Spanish. You can laminate it and show it to a doctor or anyone else you need to, if you become ill, it could save a lot of stress to know that no misunderstandings will happen.
 

Kanga

Moderator
Staff member
Camino(s) past & future
Francés x 5, Le Puy x 2, Arles, Tours, Norte, Madrid, Via de la Plata, Portuguese, Primitivo
In October the Sarria to Santiago section will not be overcrowded and is a good option because of the infrastructure. The path in that section is also pretty and quite varied.

The links in this post are specifically for disabled pilgrims and might be helpful:

Hello Wheelchairpilgrim! Welcome to the forum! I wish you a pleasant and fruitful stay among us.

www.ibermutuamur.es/camino_santiago/inicio/inicial.htm is an online guide (just in Spanish but you may try with an online translator if necessary) about the camino (from Roncesvalles) for handicapped people. It includes stage by stage info about accesibility of the route and alternatives when accesibility isn't good (enough), info about accesibility on some buildings (-some- accommodations, -some- restaurants), some tips to consider before your trip, some historical info...

http://accesible.xacobeo.es (web just in Spanish or Galician but you may try an online translator) has info about the stages in Galicia (i.e.: from O Cebreiro to Santiago de Compostela) including pictures of the route (what can give you a good idea of what you might find), alternatives for tricky areas, info about the gradient (%) of some climbs...

I'm not sure how updated (or outdated) are the links I provided but I'm pretty sure they can provide you some useful info.
 

C clearly

Veteran Member
Camino(s) past & future
Frances (2012, 2014, 2015, 2016), VDLP (2017), Mozarabe (2018), Vasco/Bayona (2019)
Welcome! The highest elevations are only 1500 m (3300 ft), which I don't think is likely to be a problem in terms of the oxygen. Wikipedia says altitude sickness typically shows up above 2400 m (8000 ft). However, the exertion on those stretches might be too much so you will have to make a judgement based on various factors.

October is a great time to walk. Best of luck in your planning and preparation!
 

jozero

Been there, going again...
Camino(s) past & future
CF x 3
I echo all above regarding Sarria to Santiago. The way is not too hard physically demanding and numerous options exist for whatever distance you feel up to that day. To ease the physical burden you may be interested in using a bag transport company like Jacotrans.

I wish you and your daughter well and hope the spirit of Santiago gives you strength and courage.

Buen Camino
Jordon
 

CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
Thank you all!

I found a a good overview of my condition in Spanish I will print out. Good idea to laminate. As my condition is rare, very few doctors know about it. Fortunately, my daughter is fluent in Spanish. I can get along with a combination of French and limited Spanish, but not regarding medical issues.

I plan to use the bag transfer service, and I purchased special shoes to break in, recognizing the ones I usually walk in are inadequate. I had a bad episode of altitude sickness at Lake Tahoe in California, but that is definitely higher than the Iron Cross.

It sounds like you all think the last section of the French Way makes more sense than the English Way or an itinerary that involves covering more distance with a combination of walking and buses. True?

Thank you again for all your advice. I am looking forward to a wonderful experience and meeting other walkers on the camino.

Sue
 
A

Anemone del Camino

Guest
You said you do not do well with sun/heat: have you considered walking with an umbrella? There are handless umbrellas that come with a silver canopy which increase the effectiveness against the heat:
http://www.euroschirm.com/schirm/Swing_handsfree/index.cgi?session=Cyfwj30LTq8F7&sprache_land=usa

Best of luck to you, and good for you for having the courage to live this dream. Your goal seems reasonable, and having your daughter there with you. May it be a bonding experience for the two of you.
 

julianne kalam

New Member
Camino(s) past & future
October and November 2016
Hello, and thank you for letting me join this group.

I am 63 and have a rare progressive neurodegenerative disease called Multiple System Atrophy that causes various symptoms involving the autonomic nervous system (blood pressure, heart rate, breathing, digestion, temperature control, etc.) and movement. I am still able to walk using poles, and I am able to do so at a reasonable pace for about three miles at a time (have done 4 miles on a treadmill), but do not know how long that will be possible. I am planning to walk part of the Camino in early October with my daughter and have been exploring various route and lodging options. I realize time is short, but decided too risky to wait until next spring.

My hope is to walk a total of about 100 KM this trip, walking 10-15 KM (6-9 miles) a day, perhaps more on good days, but my doctor wants me to be conservative and not push myself too much. I will need to take breaks (my thought is to walk 5 KM stretches), and I have to be careful of too much direct sun if warm. October is a good time for me, as getting either too hot or too cold can be problematic (heat is more of an issue than cold). My doctor is also concerned about high elevations. While I would love to see the Iron Cross and/or the village of O'Cebreiro, I think likely will have to skip.

Some friends and family members think I should not attempt this, but I feel a need to persevere. I have assured them all that I will stop if necessary, and my daughter will ensure I do. I originally planned on doing one of the final 100+km stretches, but getting the certificate is not important, so I am looking at other stretches as well. I have been told not to miss seeing Santiago, even if I take a bus or train there at end, and I want to see Finisterre. While I might be able to travel another part of the camino in the future, my condition is progressive, so this may be my only visit there. That said, I like to think I could return.

The English Way has an appeal because I could do the entire thing and I have Irish/English heritage, but there seem to be a lot of reasons to do part of the French Way...more infrastructure, places to stop, varied terrain, other pilgrims to meet, etc. Any suggestions or guidance would be appreciated. My daughter is particularly concerned that we be able to get medical attention should something happen, and I will go to Spain with special traveler's insurance.

Thank you for your kindness in reading this far. Buon Camino!

Sue
Hi Sue,
I have not done the camino yet but am planning to in October as well, so I don't have a lot of advice for you....but your story is moving to me...I am so happy that you are taking the opportunity to experience the camino. I was diagnosed with MS 2 years ago and was a bit nervous about going but I have wanted to do the camino for 10 years now so i figured it was time. I dont know much about your condition but i think as long as you aren't too hard on yourself and just go at your own pace and take rest days you can still enjoy the camino.
Thanks for sharing your determination and strength...I hope you make it there and who knows? Maybe we will cross paths...all the best...I will send good vibes your way.
Julianne
 

notion900

Veteran Member
Camino(s) past & future
>
I agree about the French way being better for you. Other routes just don't offer the flexibility with regard to stage length that you need. Have you thought about keeping flexibility with regard to your return plans from Santiago? Changing flights to the US is expensive, but I would add a few extra days in the plan so there is no pressure on you.

Here is a thread to inspire you.
 

CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
Hi Sue,
I have not done the camino yet but am planning to in October as well, so I don't have a lot of advice for you....but your story is moving to me...I am so happy that you are taking the opportunity to experience the camino. I was diagnosed with MS 2 years ago and was a bit nervous about going but I have wanted to do the camino for 10 years now so i figured it was time. I dont know much about your condition but i think as long as you aren't too hard on yourself and just go at your own pace and take rest days you can still enjoy the camino.
Thanks for sharing your determination and strength...I hope you make it there and who knows? Maybe we will cross paths...all the best...I will send good vibes your way.
Julianne
Thank you for your kind words. I am glad you too are walking the camino, especially after wanting to for so long. I hope your own challenges are not too difficult. And yes, perhaps our paths will cross. Buen Camino! Sue
 
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CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
I agree about the French way being better for you. Other routes just don't offer the flexibility with regard to stage length that you need. Have you thought about keeping flexibility with regard to your return plans from Santiago? Changing flights to the US is expensive, but I would add a few extra days in the plan so there is no pressure on you.

Here is a thread to inspire you.
Thank you for this link. I am planning time at the beginning to get through some of the jet lag, especially as I am coming from California, and hopefully some rest time at the end. My return will not be flexible, as my daughter will have to return to the States on schedule. I am grateful for the time she is able to take off work to travel with me. Sue
 
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CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
You said you do not do well with sun/heat: have you considered walking with an umbrella? There are handless umbrellas that come with a silver canopy which increase the effectiveness against the heat:
http://www.euroschirm.com/schirm/Swing_handsfree/index.cgi?session=Cyfwj30LTq8F7&sprache_land=usa

Best of luck to you, and good for you for having the courage to live this dream. Your goal seems reasonable, and having your daughter there with you. May it be a bonding experience for the two of you.
Thank you for your kind words and the link to handless umbrellas! I will likely purchase one. Sue
 
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CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
In October the Sarria to Santiago section will not be overcrowded and is a good option because of the infrastructure. The path in that section is also pretty and quite varied.

The links in this post are specifically for disabled pilgrims and might be helpful:
Thank you for the advice and links! Sue
 

CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
I agree about the French way being better for you. Other routes just don't offer the flexibility with regard to stage length that you need. Have you thought about keeping flexibility with regard to your return plans from Santiago? Changing flights to the US is expensive, but I would add a few extra days in the plan so there is no pressure on you.

Here is a thread to inspire you.
I agree about the French way being better for you. Other routes just don't offer the flexibility with regard to stage length that you need. Have you thought about keeping flexibility with regard to your return plans from Santiago? Changing flights to the US is expensive, but I would add a few extra days in the plan so there is no pressure on you.

Here is a thread to inspire you.
Thank you for the advice and link. The thread about Daniel is inspiring. He sounds like a very special person, as so many on the Camino are. Sue
 

notion900

Veteran Member
Camino(s) past & future
>
What's also heartening is how many people were looking out for him. He said nearly every day someone offered to carry his backpack for him. Sometimes he said yes, other times he didn't need help. He did it just by walking short stages, very slowly at his own pace (taking 3 times longer than most people in total). He is inspiring and such a fun person too!
 
A

Anemone del Camino

Guest
I'm glad you like the idea of the umbrella. It's great to block the sun but also for rainy days it allows you to walk with an open Altus poncho so you don't sweat and suffer from condensation. I alsways carry my pack, so I just thread the shaft between me and the pack's staps or ise the attache,enta that come with it. If you want to walk without a pack but using walking poles, look into the harness they sell.
 

CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
I'm glad you like the idea of the umbrella. It's great to block the sun but also for rainy days it allows you to walk with an open Altus poncho so you don't sweat and suffer from condensation. I alsways carry my pack, so I just thread the shaft between me and the pack's staps or ise the attache,enta that come with it. If you want to walk without a pack but using walking poles, look into the harness they sell.
I will check out umbrella harness options and the Altus poncho. I have to worry more about not sweating and overheating than sweating, as it is one of the autonomic systems that doesn't function properly. Thank you again.
 

CalSue

New Member
Camino(s) past & future
Beginning of CF (2016)
Hi and welcome to the virtual pilgrim albergue of this forum. I think that the way from Sarria to Santiago on the Camino Frances would be perfect for you. In October pilgrim numbers will have quietened down - so there is no bed race and albergues/other accommodation are available every few km/miles. Medical attention wouldn't be a problem either provided you have adequate health insurance/coverage (which might be an issue considering your pre-existing health problems). Level of health care is high in Spain - no need to worry there!
Anything I can do to help, just send me a PM, Buen Camino and follow that call!, SY
Thank you for the warm welcome. You seem to be one of the most experienced camino walkers. I appreciate your advice and that of others in this virtual pilgrim albergue. Buen camino! Sue
 
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