What I Learned After Walking 500-Miles Talking About Lewy Body

We are done! We did it! We walked 500 miles of the Camino de Santiago (the Frances route). And we created awareness for Lewy Body Dementia and raised a bit of money doing so.

When my husband and I decided to combine our 500-mile walk in northern Spain on the Camino de Santiago with fundraising for the Lewy Body Dementia Association, we had some expectations but as usual, things don’t turn out quite as expected. After 35 days of walking and completing the task of getting to Santiago de Compostela (the end point), I have some thoughts about our journey…

We Finished the Camino--500 Miles!

We Finished the Camino–500 Miles!

About Creating Awareness

I found many people were very curious about the signs we carried on our backpacks and often approached us to ask questions. In every case, people where open to discussion and asked several questions. I think we did a great job of at least creating some awareness so people realized Lewy Body is different than Alzheimer’s and understood some of the most common symptoms. The fact that Robin Williams is now linked to the disease, while tragic for him and his family, has helped bring attention to the disease. I know Whoppi Goldberg is the official celebrity face of the Lewy Body Dementia Association in the United States but nobody we met knew it and it’s not played up much. I feel like we did a good job talking to hundreds of people about Lewy Body on our walk.

Walking for Lewy Body Dementia

Walking for Lewy Body Dementia

About Fundraising

Fundraising is much harder than I expected. I think people have their favorite charities they donate to and they stick to them, or give to their church. Many people admired what we were doing but I think it takes many months of building up to an event and tons of public relations to get people to open their pocketbooks. We certainly won’t be walking 500 miles again any time soon but we will think of other better ways to raise money for the Association. Interestingly, the closer we got to the end of our walk, we had people along the way just give us cash to give to the Association. We truly appreciate all the words of encouragement we got along the way, and particularly those who donated to the cause. I never appreciated how hard it is to fundraise until this walk. (In fact, you can still donate to the Lewy Body Dementia association by clicking on the orange box to the right…)

About Lewy Body and Families

We met at least a dozen people, starting with the day before our walk began until the day it ended 35 days later, who had a loved one who suffered from Lewy Body Dementia. The connection to these people was amazing to me. There aren’t many specifically Lewy Body support groups around. Even in an area as large as Los Angeles/Orange County, the one support group ended. Talking directly to people who have experienced or are going through what I went through was a strong emotion and feeling for me. Several times me and the other person cried remembering it all again.

After we finished the walk at the steps of the cathedral in Santiago, we were in line waiting to get our certificate of completion at the Pilgrim’s Office. It was a long line of tired walkers, standing for over an hour after completing the walk. The lady standing in line behind me tapped me on my shoulder and said my standing there in front of her must be a sign. She said her husband died in 2008 of Parkinson’s Disease with Lewy Body. She told me in her case, she got tremendous help from the Michael J. Fox Foundation for Parkinson’s. There really needs to be more support groups for Lewy Body Dementia.

About the Camino de Santiago

A couple years ago we watched a movie about the Camino called, The Way, and we have a few acquaintances who had done the Camino in the past but other than that, we didn’t know much about what to expect beyond that. Walking with strangers for days on end is not like going on a package tour with a detailed itinerary, that’s for sure!

We knew we could finish because we are the kind of people that set our minds to things but we didn’t know how hard (or easy) it would be. We trained on long walks in Long Beach and they were really, really hard. We did a 12-mile walk from Long Beach to Newport Beach and back with our packs on and we were beat at the end. Both of us were questioning our abilities to do the Camino.

Fortunately, it wasn’t that hard every day. It was really hard on some of the very long days but in general it was not that bad. In fact, after a few days of walking, 12 miles became easy, 15 miles was a moderate day, and it wasn’t until we had two 18- and 19-mile days back to back that it was crazy hard! Although, after 35 days, I was absolutely ready to stop walking.

The best part of the Camino for us was the fantastic scenery along the way and the interesting people we met walking. Boring people do not walk 500 miles in one shot! We had lots to talk about with amazing people, which made the time fly. Of course, there were moments in the bad weather and desolate areas that were absolutely not fun to walk, but at the end of the day we always celebrated with fellow pilgrims over a beer, glass of wine and a nice Spanish meal. That was incredible!

Will we walk it again? Most likely no. For us, it was a once-in-a-lifetime event but it will definitely lead to other adventures in the future.

(Part of) Our Camino Family

(Part of) Our Camino Family

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