Walking the Camino with parkinson's

[aliciag56]

Lucky me. Four years ago I was diagnosed with Parkinson's. On the advice of my doctor I've been working the exercise, including 2 21 day caminos the last 2 years.
The next time I'm back I'd like to do the full Camino Frances but that won't be for three or four years. The disease will undoubtedly progress in those three or four years.
For those who hike the Camino with Parkinson's what are your greatest challenges? fatigue? balance? Has an exercise program like hiking the Camino helped slow the progression for you?
Any insights greatly appreciated!

 

[malingerer]

Lucky me. Four years ago I was diagnosed with Parkinson's. On the advice of my doctor I've been working the exercise, including 2 21 day caminos the last 2 years.
The next time I'm back I'd like to do the full Camino Frances but that won't be for three or four years. The disease will undoubtedly progress in those three or four years.
For those who hike the Camino with Parkinson's what are your greatest challenges? fatigue? balance? Has an exercise program like hiking the Camino helped slow the progression for you?
Any insights greatly appreciated!

I cannot help you with the Parkinson's but this I will say, you already have the will, so you will find The Way.

God speed and Buen Camino

Samarkand.

 

[dougfitz]

You might want to search for @jirit's posts or contact him directly about this. Using the forum search function, if you haven't already done so, might also give you a lead on who else has walked with Parkinsons.

 

[Elle Bieling]

I walked the Camino Inglés and then the Finisterre with a friend who had Parkinsons. He had a wonderful attitude, but as an RN myself, I can say that indeed, he struggled with fatigue and balance. Both worsened the father along we went.

He had trained prior to the Camino, but one never knows for sure, how day after day after day actual feels until you do it.

I would say, based on what I observed, that building in plenty of rest days should be imperative. As you feel you need, of course. My friend has a rapidly progressing condition, and you will need to be tender to your own needs, however that looks for you.

My friend completed the walk, but the final day, after pushing himself too hard, he had to be rescued by taxi when he could go no more. He gave it his best effort, but perhaps he would have done better if he hadn't pushed so hard and did shorter days.

I wish you the best, as you navigate and honor your unique needs!! Ultreia!

 

[BruceNZ]

I walked the Camino Inglés and then the Finisterre with a friend who had Parkinsons. He had a wonderful attitude, but as an RN myself, I can say that indeed, he struggled with fatigue and balance. Both worsened the father along we went.

He had trained prior to the Camino, but one never knows for sure, how day after day after day actual feels until you do it.

I would say, based on what I observed, that building in plenty of rest days should be imperative. As you feel you need, of course. My friend has a rapidly progressing condition, and you will need to be tender to your own needs, however that looks for you.

My friend completed the walk, but the final day, after pushing himself too hard, he had to be rescued by taxi when he could go no more. He gave it his best effort, but perhaps he would have done better if he hadn't pushed so hard and did shorter days.

I wish you the best, as you navigate and honor your unique needs!! Ultreia!

Sound advice for anyone methinks. We are constantly amazed at both the distances and the lack of days off/rest days to have time to stop..look around..explore .. and enjoy the beauty (and otherwise sometimes) of Spain. Tho to each his own I guess !?

 

[C clearly]

You might want to search for @jirit's posts or contact him directly about this.

Yes. Here is a link to his recent thread.

 

[Ivan_Prada]

Hello @aliciag56; I am also a Parkinson’s pilgrim, really admire you have already walked Camino. Myself, only once and planing my second since completed the first. What really got me was the exhaustion at the end of the stage. To be true, I didn’t practiced that hard; where I live there are to hills or mountains (South Florida) but lots of heat to get you ready for the Meseta.

For my next Camino, for sure I’m getting ready and using lots of stairs to pump my cardio strength up and cut the exhaustion at end of day. Very important is to keep your timer to remind taking your doses on time, keep your Doctor informed about the training and very important, use walking sticks to help you.

I think that training has helped me from letting the disease to make greater advances; I have been on the same amount dose of prescription for the last three years. Of coarse, there are events that triggers certain symptoms that requires my attention to control.

One thing that has help me a lot, are over thirty years of martial arts training, they created in me a sense of awareness that has helped me to cope with P.D.

Keep up with your training and keep your Doctor informed on any issues you encounter. Enjoy your Camino.

Iván

P.S.
Keep moving on, don’t stop. This is the way to fight Parkinson’s Disease.

 

[Rick M]

My last Camino was with a friend who suffers from a neurological disorder that presents much like Parkinson's. He was physically ready for the walk. It became quickly clear that while he was strong and fit, balance was going to be an issue. After a few falls, we began shipping his pack forward. I could not persuade him to use walking sticks. He persevered, and was able to make it to Santiago by taxiing around the tricky descents with difficult footing. Shipping the pack made a huge difference for him, and we'll never know if walking poles would have helped him even more. Luckily, his falls, and there were a few, left him with nothing more than bruised elbows and ego.

Everyone will be different, and only you will be able to judge your balance on rough ground. I see no reason you can't avoid the trickiest bits if you have to, there really aren't that many on the Frances. Try some rough ground descents before you go so you know what your limits, if any, will be at the time.

 

[ghbeck]

Lucky me. Four years ago I was diagnosed with Parkinson's. On the advice of my doctor I've been working the exercise, including 2 21 day caminos the last 2 years.
The next time I'm back I'd like to do the full Camino Frances but that won't be for three or four years. The disease will undoubtedly progress in those three or four years.
For those who hike the Camino with Parkinson's what are your greatest challenges? fatigue? balance? Has an exercise program like hiking the Camino helped slow the progression for you?
Any insights greatly appreciated!

Hi.
I was diagnosed with Parkinson’s disease about three years ago. I'm very active and wanting to do the full Camino.

Thinking of Fall 2024. Luggage Transport or carrying own gear?


Any thoughts? Any other individuals diagnosed with PD wanting to do it?

Suggestions are welcome!

 

[aliciag56]

Sounds great but not sure I could pull it off. still working full time although mid-october through mid-December my slow period.
I could probably physically carry the pack but honestly I'm afraid of balance issues. If you feel strong enough I'd say do it w

 

[Collie]

Hi.
I was diagnosed with Parkinson’s disease about three years ago. I'm very active and wanting to do the full Camino.

Thinking of Fall 2024. Luggage Transport or carrying own gear?


Any thoughts? Any other individuals diagnosed with PD wanting to do it?

Suggestions are welcome!

A very tentative reply. I was planning to walk the Spanish Camino pre Covid. Covid put paid to walking in 2020. I then had severe Guillain-Barre Syndrome. Hospitalised for 3 months, only to be diagnosed with Parkinson’s on discharge. I walk about 10 miles on a good day. Don’t know how realistic it might be? Love the idea.

 

[jirit]

Sorry for arriving late to this thread.

As some have already pointed out I walked the Camino Invierno this past May from Ponferrada to Santiago a distance of 265 km. It was my first camino since being diagnosed with Parkinson (2019) but my 7th camino since 2007. And strangely enough I had Guillain-Barre Syndrome back in 2004/05 but I recovered quite rapidly.

I have had motor symptoms for nearly 10 years but I remain active daily (i walk almost everywhere), participate a senior fitness class 3 times per week and still work part-time 4 days per week. I was the past VP and director of the CCoP in Canada.

I found the walk not difficult at all but I kept the stages down to approx 20 km/day down from 30 km/day from what had being doing back in 2011/2012. This was probably more to do with age (I am now 65) than due to PD. Like most things with PD new symptoms surface and may away due to changes in meds, or may hang around. I found taking a complex B vitamin and 3500 IU of Vitamin D helped significantly with fatigue.

Apart from taking my meds each day, exercising regularly, eating well, drinking often and getting a good 7 ½ hours of sleep each night, I have managed to keep the progression of this disease to a slow crawl.

While doing this last Camino given that I was walking 20 km each days I felt each better than i would have at home. Apart from coming down in COVID after I got home, i generally had no issues doing the camino with PD. In fact i am giving serious consideration in doing the Camino Primitivo this Spring.

 

[jirit]

..."drinking often means drinking water often" though on the camino i normally finished the day's walk with a beer and shared a bottle of red wine at dinner with my camino companion

 

[aliciag56]

Sorry for arriving late to this thread.

As some have already pointed out I walked the Camino Invierno this past May from Ponferrada to Santiago a distance of 265 km. It was my first camino since being diagnosed with Parkinson (2019) but my 7th camino since 2007. And strangely enough I had Guillain-Barre Syndrome back in 2004/05 but I recovered quite rapidly.

I have had motor symptoms for nearly 10 years but I remain active daily (i walk almost everywhere), participate a senior fitness class 3 times per week and still work part-time 4 days per week. I was the past VP and director of the CCoP in Canada.

I found the walk not difficult at all but I kept the stages down to approx 20 km/day down from 30 km/day from what had being doing back in 2011/2012. This was probably more to do with age (I am now 65) than due to PD. Like most things with PD new symptoms surface and may away due to changes in meds, or may hang around. I found taking a complex B vitamin and 3500 IU of Vitamin D helped significantly with fatigue.

Apart from taking my meds each day, exercising regularly, eating well, drinking often and getting a good 7 ½ hours of sleep each night, I have managed to keep the progression of this disease to a slow crawl.

While doing this last Camino given that I was walking 20 km each days I felt each better than i would have at home. Apart from coming down in COVID after I got home, i generally had no issues doing the camino with PD. In fact i am given serious consideration in doing the Camino Primitivo this Spring.

Thank you! Very inspiring

 

[trecile]

I'm coming to this thread a bit late. I have a family member who I had planned to walk the Camino del Norte with in 2020. In the intervening years he started to have Parkinson like symptoms, but was only recently diagnosed. I'd still love for him to walk a Camino (not the Norte though!), and your experiences make me think that it might be possible. Thank you for sharing @aliciag56, @Ivan_Prada, @jirit

 

[Parkinsons]

Hi.
I was diagnosed with Parkinson’s disease about three years ago. I'm very active and wanting to do the full Camino.

Thinking of Fall 2024. Luggage Transport or carrying own gear?


Any thoughts? Any other individuals diagnosed with PD wanting to do it?

Suggestions are welcome!

Hello, I was diagnosed with PD 2 years ago. We are new to Camino, with our first coming in September 2024. We are training since last month and looking forward to the short Camino we are starting with. We will do the Sarria - Santiago. Exercise and happiness are the keys to staving off symptoms. I hope to find. Both on the Camino.