Walking & Talking with People From Around the World About Lewy Body Dementia

Walking & Talking with People From Around the World About Lewy Body Dementia

It’s Day 11 and we have completed 115 miles on our 500 mile-walk on the Camino de Santiago for the Lewy Body Dementia Association. Now walking every day is a habit. Yesterday we took an extra day to sightsee around the city of Logrono in the La Rioja Region. It felt great to have a break from walking but this morning I was ready to go; excited to see more places and meet more people.

Today was a really short walk of just 7 miles. There was a time 7 miles sounded like a lot but our average day has been about 12 miles and a few 15 miles, and one 17 miles, so 7 is a piece of cake!

We stopped by a lake where two fellow pilgrims (that’s what walkers on the Camino are called) we have met along the way before were having a rest. One of them is a doctor in Italy and the other an occupational therapist from Spain but now lives and works in London. We spent about 20 minutes talking about Lewy Body Dementia and the differences between the health care systems in various countries. Angela, the occupational therapist, asked me if my dad got regular physical therapy during his time with Lewy Body. Talking with her reminded me of the frustration my family had last year because Dad DIDN’T get regular physical therapy. In fact, he only had it a handful of times in a few years. It was a facet of the treatment totally non-existent. I guess Medicare doesn’t provide it and it was not offered otherwise at the facility where Dad was living. A handful of times in the 10 months my Dad lived there, the Activities Director would allow him to get on a stationary bike the memory care unit kept in the office, and she would monitor him for 10-15 minutes while he rode. He was so excited about riding that stationary bike every chance he had, he even kept a chart of his progress of time, speed and distance. After I told Angela about our experience, she commented how important it is to have physical therapy as part of a treatment plan. I totally agree!

Bob and I hit the road after our chat on the lake, and within 10 minutes a young guy caught up to us and asked us about the posters on our backs. We explained that we are trying to spread awareness of Lewy Body Dementia and as it turned out, he knew quite a bit about it because he’s a medical student in Germany. We had a very long talk about dementia as we all walked a few miles more. Alexander was so interesting and extremely smart—he’ll make a great doctor someday! I was really surprised that a medical student knew so much about dementia, specifically Lewy Body, while some of my Dad’s doctors really didn’t know much about it at all. He stressed how important it is to have a multi-discipline approach to treatment with a team of specialists. I feel that was something lacking in the treatment my Dad received. When Dad was in the hospital with a broken hip, his neurologist in the same hospital didn’t even know he was there until my mom and I happened to run into him on the hospital campus!

Walking for LBDA.org

Walking for LBDA.org

For me it’s fascinating to meet professionals in the health care industry both in the U.S. and other countries who share their knowledge and opinions about dementia, Lewy Body and the health care system.

While we were sitting at a small café having a sandwich for lunch, two German men were sitting at the table next to us and they asked about the posters. One of them took one of our informational cards so the message continues to spread. Alexander, Bob and I agreed that often grass-roots activism creates the most awareness of a disease and sometimes it’s just one person, a researcher or just a regular individual, who looks in a different direction that discovers a cure.

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