Walking the Camino with Parkinson's

[jirit]

By checking my profile, you will see that I have done a number of long distance caminos since 2007. The last time was 2013 when I walked the Via de la Plata. But this was all before I was diagnosed with Parkinson's Disease in the spring of 2019. And even after first experiencing my initial motor symptoms way back in 2014, I still only have mild symptoms.

I am now returning to Spain this May to walk the Camino de Invierno (the winter route) over 15 stages to Santiago, with plans to walk to Muxia and Finisterre, a total distance of over 350 km. According to my iPhone my current average walking speed is over 5 km/hr on the flat which has remain constant for the past two decades if not longer.

I know there are a numer of people on this forum that have Parkinson's and have walked a camino or two or more.

So my question for these PwP folks: Did you adjust your dosage of levodopa during the walk to compensate either up or down, more frequently or less?

I currently take 1.5 100 mg tablets four times a day and 200 CR (controlled release or sometimes known as 'crappy release') tablet at bed. I am thinking of changing my pill program to 1 100 mg tablet 5 times per day while I am walking.

Welcome any suggestions or comments. Thanks

 

[wayfarer]

I would consult my doctor about this rather than the varied opinions you will get here.
I wish you well on your upcoming Camino and hope that the weather and the road is kind to you.

 

[jirit]

I would consult my doctor about this rather than the varied opinions you will get here.
I wish you well on your upcoming Camino and hope that the weather and the road is kind to you.

Until you have actually experienced Parkinson's it is the varied shared experiences from those that have Parkinson's that you appreciate more.

 

[koknesis]

Unfortunately PD has different etiologies and each patient may have individual response to the treatment. Indeed, only your neurologist can advise you on this matter. Good luck!

 

[wayfarer]

Until you have actually experienced Parkinson's it is the varied shared experiences from those that have Parkinson's that you appreciate more.

Well that's my reply put in its place.

 

[dixphd]

The other professional you might consider asking is your pharmacist. I commend you for continuing to do these walks. Keep it up.

 

[aliciag56]

Fellow pd traveler but on rasigilene.
Have you gone on a few long-ish hikes to see how your body reacts?

 

[Paul Wilson]

My post was removed for being classed as “medical advice” (fair enough as I gave an opinion) but it was a link to caffeine and it’s effects on Parkinson’s the link was from a renowned and respected research group in Uk with similar papers published by groups around the world so to avoid giving medical advice why not Google “coffee and Parkinson’s” it has some interesting findings

Mods if this doesn’t meet the requirements please delete and I can DM the info but I know there are more than 2 PD pilgrims in the group

 

[jirit]

Fellow pd traveler but on rasigilene.
Have you gone on a few long-ish hikes to see how your body reacts?

I have being doing 10-15 km hikes (doing one today in fact) without an issue. And I generally walk 5 km per day just around town. I think all the walking I do is helping manage my symptoms.

But obviously doing a multi-day hike might be different, so I was curious how other PwPs managed while during the camino. In other words, should I take more pills for example becuase I might need to up my dosage?

For the record I am not looking for medical advice, just feedback from other people's experience, those that have done a camino with PD.

For those dont have PD, please dont suggest that I talk to my pharmacist or doctor (GP). Neither will offer advice legally. I even doubt my movement disorder specialist could offer any advice about dosage while walking a camino.

 

[aliciag56]

i can't speak to dosage but i can tell you what worked for me
- good night's sleep (thus the use of private rooms)
- pace yourself
- hydration
- if need arises, taxis ok
- i'd start slow - maybe if you're starting SJPP consider ValCarlos
- breaks as needed

probably sounds like common sense ideas, but like I say worked for me

 

[koknesis]

But obviously doing a multi-day hike might be different, so I was curious how other PwPs managed while during the camino. In other words, should I take more pills for example becuase I might need to up my dosage?

Drug research has been my primary occupation before retirement, therefore I’m sorry to say, that anything you may learn from other PD patient experiences might be not relevant for you. Again, the response is very individual. It has been studied, see for instance: https://pubmed.ncbi.nlm.nih.gov/1407589/
So, basically the conclusion is that “Exercise delayed levodopa absorption in five patients, increased it in three, and did not influence it in two. We conclude that exercise can either increase or decrease levodopa absorption.”

On the other hand, changes in diet during Camino may have much more profound impact on the drug pharmacokinetics than physical activity.

A sensible approach then might be to keep the recommended dosage and usual diet, if possible. Or at least avoid high protein one.

Buen Camino!

 

[C clearly]

My post was removed for being classed as “medical advice”

There is a fine line to tread. We have general discussions of health-related topics all the time, with members describing their personal experiences. However, we don't want to have public debates on treatment or medical opinions, partly because we have no way to judge qualifications, assess reliability of sources or conduct peer reviews.

So, hopefully you will understand this quandary, and continue to be helpful, with a focus on the Camino-related aspects, at a lay person's level.