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Heading to Portugal. Ready. Listen to last episode from ’19 Spanish Camino. Sounds of tapping of my canes, white storks, cathedral bells chiming. Stay tuned.
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Episode Notes
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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here
Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on transcript)
Advantages of progressive illness 03:20. 1
Tap, tap, tap of my two canes 11:58. 3
White storks in Portomarin 16:14. 4
Santiago de Compostela Cathedral 16:39. 4
Heading home to Boston 17:35. 4
Links
Rien MacDonald’s Hope Initiative podcast
Maria Xenidou’s Impact Learning podcast
Regina Holliday’s Cinderblocks conference
Related podcasts
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Credits
Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger
Web and Social Media Coach Kayla Nelson @lifeoflesion
The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
Inspired by and grateful to David Bourne, Carole Blueweiss, Rien MacDonald, Maria Xenidou, Regina Holliday, Mary Lawler, Ann Boland, Mike and Linda DeRosa, Kate Higgins, Cynthia Meyer
About the Show
Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.
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The Show
Proem
I’m getting ready to go on a pilgrimage to Portugal and Spain. It’s the Camino de Santiago. And for those of you who’ve been following me, know I’ve been podcasting about it. I’ve been podcasting about my previous trip in 2019 when we went to Spain and my training. I’ve gotten a lot of comments on these episodes, and mostly they’re attaboy comments, but some asked me if I’m afraid. Aren’t I scared? I think that’s a good question. At first, I just wanted to dismiss it. What could happen? I’m going with friends, lots of other people are on this pilgrimage. It was safety uneventful in 2019 when we went. But to be honest with you, yes, I have some fear. I have a “what if” kind of thing. What if this, what if that, what if I have an exacerbation of my MS? What if I fall? What if I hurt myself? And I worry about that stuff? I do. I’ve been accused of being pathologically optimistic, and I am. I like to look on the bright side and plow ahead, looking forward to adventuring. But I do have my periods of fear. You can’t have a chronic progressive illness, like multiple sclerosis and always be pathologically optimistic. That would be insane. I will say that MS is seriously annoying. MS sucks. It really sucks. But I’m the kind of person with my demons at night, whether it’s waking up in the middle of the night, worrying about, oh my goodness, what’s this ache? What’s this pain? Is this the beginning of the end? Or have dreams? And I have dreams where I’m out of control, where all of a sudden, I’ll find myself somewhere, and I have no assistive device. I have no friends. I just feel like I’m in danger. So, my fears are nighttime fears for the most part. But it’s a good question.
Advantages of progressive illness
I do feel that I have some advantages and some of the benefits that I have are that I’ve been adapting for years. The neurologist said I had it for twenty-five years when I was diagnosed with multiple sclerosis. And when we pieced it back 25 years, I could see that I was having episodes, and it was being diagnosed as cardiac disease. And I would get a cardiac workup. But I adapted, and that’s what I’m good at. I’m except good at accepting what is and then adapting. And I know that certain fundamentals are essential. The fundamentals are. Drink water and keep moving. Those are the two most important fundamentals. Keep moving, just keep moving because if I stop moving, it’s over. Then, once you can’t, it’s hard to recover when you stop moving. And then I know my physical therapist and my chiropractor, my massage therapist, you have the aches and pains of activity. Not so much the aches and pains of inactivity. So that’s good. That’s good.
Heading out shortly
So, I’m going on this pilgrimage. I’m going to share the last of three episodes that I did in 2019. That episode was about Days six to 12on the Spanish Camino. I’m really looking forward to going, we’re going shortly, and I’m prepared. I’m as prepared as I’m going to be. And I’m with friends, and it’s just being out there and having an adventure with my honey is just my idea of a good time. I’ll be talking to you along the way. I plan to video and record; I will pay particular attention to accessibility and whatever kind of adventures come our way. And I hope I’ll be able to include my compatriots depending on their comfort with recording. And I’ll see you around the block. Take care.
Week 2
Good morning. It’s day 10 of the Camino de Santiago Pilgrimage. I’m going from Palas de Rei to Castaneda, Spain – about 14 miles. Palas de Rei is a large town that feels urban, small urban. And I’m going to Castaneda, which is a small town. So that’ll be different. And I confess to being pretty grumpy when everybody finally made it to the hotel last evening, and we went out to eat and hang out. I don’t know why I was grumpy. Nothing particular. I’m not particularly feeling left out. Just grumpy. I guess part of the ups and downs of life. And so, this morning, it’s about 9:00 in the morning, and I’m waiting for 10 o’clock. I’m going to get picked up to taxi me and the luggage to the next place.
Inspired
I’ve been feeling inspired this morning. I’ve been listening to Rien MacDonald’s Hope Initiative podcast. I highly recommend it. He’s a fabulous interviewer, and he knows such interesting people. He brings out the best. He started interviewing his 12-year-old sister and then his mom and his dad and his grandmother and a bunch of friends in a car trip and a man who was cleaning his windshield, and now I was just listening to a marathoner or who did like 47 marathons in 47 days or 48. I don’t remember. But anyway, I was inspired by him. And then, I was inspired by Maria Xenidou’s Impact Learning podcast. It’s terrific. They gave me a lift, so I’m not so grumpy. And I had a text exchange yesterday with Regina Holliday, who has the Walking Gallery, and she has a Cinderblock conference in July, which I think is fabulous. I’m going to put something together for her conference. The topic is Rest and Rejuvenation, which seems appropriate here in the second week of my pilgrimage. My wife and I were trying to remember when we last took two weeks off. Goodness, it was 12 years ago. We went to Amsterdam with my uncle Leon, which was a blast. But otherwise, we’ve gone away for a week or a few days. But two weeks, that’s different. Focusing on rest and Rejuvenation is a good idea.
Quieting my mind
I can’t believe how much I enjoy just listening to the birds and the wind. It quiets my mind. I know you’re shocked to learn, but I have a very active mind that never stops, which works sometimes, if not most of the time. But it’s nice to quiet it and just listen. So now I’m hearing just out the window. You probably can’t hear it, but I’m hearing Road sounds. And at least a couple of different kinds of birds. I see the swallows floating around, catching the bugs. It’s a beautiful day. The sky is blue, totally blue. And in the distance, I can see a dozen windmills upon the hill. It is supposed to be well into the 80s today, which will be challenging for the walkers. And tougher me with MS. Hot as hard. Really cold is hard too. I think my temperature regulation is not what it once was. But anyway. Alright more to come after I get to the next stop.
Now a word about our sponsor, ABRIDGE.
Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”
Tap, tap, tap of my two canes
Ok. I’m at the Albergue Turistico Salceda. I’m in Salceda, bucolic farmland. Do you hear that tap, tap, tap? That’s my two canes. I’m trying to walk here with a lapel mic and my recording device catching these different sounds. We’ll see how it works. I can hear the traffic on the road. I can hear a chainsaw. I can hear birds. I’m walking down the road and trying to avoid a lot of cow poop. I think it’s cow poop. Might be horse poop. But since there are a lot of cows around here, I wonder if I would just meet up with a herd of cows. Beautiful farmland. Rolling hills. It looks like the hay has just recently been cut. The atmosphere here is restful. Oh, my goodness, my legs are sore. I didn’t walk that much yesterday only about 4,000 steps, but almost 8,000 the day before. I might not be doing the 40,000 a day that the hikers are doing, but it’s good. Starting to get pretty hot. Supposed to be in the 80s, which is a little rough for me. But still tolerable. I’d say it’s in the mid-70s now. After a while, I think my room will be ready. I’m very early. I’m just hanging out now. I’m just taking a little walk. But after my wife gets to a certain point, I will get my chair, and I will try to motor a few kilometers and meet them. I enjoy being able to do a little bit like that. Alrighty, well, I’m headed back. Good to stretch my legs. What a lovely, lovely spot.
Mobility package
I’m impressed with how well my Mobility package works – two canes, electric wheelchairs, and taxis. My grandson commented on the challenge of finding a Christmas present for me. He said, ‘Opa, I don’t know what to get you. You have everything.’ He gave me a coupon book with five walks with him. He was thrilled because it didn’t cost him anything. I do have everything. Life is good.
White storks in Portomarin
One of the more exciting sounds I’ve heard this week has been the white storks I heard in a nest in Portomarin. Check it out.
Santiago de Compostela Cathedral
Marly Camino, our tour company, arranges an amazing personalized tour of the Santiago de Compostela Cathedral. I was most impressed by the stories in stone wood and tapestries, the graphic novels of the ages. What went into editing and producing these stories, the politics in the financing would be another crazy story. I peaked when I was able to record the Bells from inside the cathedral.
Heading home to Boston
Well, it’s back to Boston. I’m rejuvenated and inspired but not yet peaked. Back to my effective routine for best health, peak performance, and satisfying life. Thanks for joining me, and thanks to the sound of that pompous, marginally useful bird – the rooster.
Reflection
Listening to this two-year-old, almost three-year-old episode really has helped reduce some of my fear. I could do it! It’s like amazing. I was very nervous before we left, and I was worried about so many things. I was worried that I would mess things up for my wife, that I would be a burden. But I wasn’t. I was able to entertain myself. I had a purpose. It was a pilgrimage for me. I’m glad I’ve done some training. I’ve learned something in my training. I have a new selfie stick. I got new batteries for my chair. I had some thoughts about elimination during long treks. How am I going to handle that? Lots of different things to consider. You can’t really think of everything. What’s going to happen is going to happen. And we’ll adapt. And this time we’re six seventy-year-olds who are not as spry as when we met fifty years ago, but we will have a blast and I will share it with you. Thanks for joining me and listening to this reprise. See ya.
