Walking for RLS Awareness in the EU

June 25, 2020 How One Person's Journey Touches Many Inspired by a desire for the world to know that RLS is a real diagnosis, ...

June 25, 2020

How One Person's Journey Touches Many

Inspired by a desire for the world to know that RLS is a real diagnosis, in 2018 Lucy Hoekstra decided to walk to raise awareness for RLS. “Walk” is a simple word for her incredible journey. Hoekstra first attempted to walk from her home in the Netherlands to her sister’s home in Denmark but did not succeed. Nevertheless, she persisted with help from the European Alliance for Restless Legs Syndrome, and the European Federation of Neurological Associations (EFNA). On August 28, 2019, Hoekstra started a 356-mile journey from Hurdegaryp, Netherlands, to Krusbjerg, Denmark. Over 26 days, she walked the entire way, carrying her necessities and stopping for rest. Along the route she met supporters, blogged about her experience, and educated strangers about RLS. Hoekstra completed her trek on September 23, International RLS Awareness Day, inspiring people whose lives are affected by RLS, and others.

Joke Jaarsma, who is the vice chair of the Restless Legs Foundation in the Netherlands, and the president of EFNA, says, “In 20 years of patient advocacy, I have not seen this much press attention in just a couple of weeks. People like Lucy can make the difference!”

The RLS Foundation would like to thank Hoekstra for her work to raise awareness about RLS. Amber Arellano, RLS Foundation membership coordinator, recently interviewed Hoekstra about her incredible journey.

What inspired you to promote RLS, and why did you choose to walk?

I have had RLS symptoms since I was a teenager but only received my diagnosis about three years ago. It took so long because my former doctor didn’t recognize it. After I got my diagnosis, I noticed that a lot of people don’t know anything about RLS. This was frustrating at times, and I wanted the world to know that it is a real thing.

Last November, I went to Brussels for a workshop given by EFNA. This was for young neurological patients to learn how to advocate in a digital world of social media. After the great workshop, I decided to walk to raise awareness for RLS.

How did you prepare mentally, physically and emotionally for your 356-mile journey?

I started training in January and walked almost every weekend – sometimes twice. During these training walks I could test a lot of things, like shoes, my bag and clothes; and what, when and how much I would need to eat. I learned a little bit more every weekend, and in the end, it was perfect for my trip.

Mentally and emotionally I didn’t really prepare. I talked about it with family and friends but tried not to make a big thing of it. When I had my walking idea, I went to Joke Jaarsma, who is vice president of the Dutch RLS patient organization. She has connections with the German and European patient organizations. Together they organized the whole trip – press releases, website, hotels, etc., thanks also to an EFNA award (#BrainLifeGoals) that we had won. This took a lot of pressure off of me, and I’m really thankful for all the work they did.

How did it make you feel when people joined you as you walked?

It was great to have people with me to support me. Most of them were complete strangers, but when you walk and talk, you get to know people. During my trip, my pace slowed down a little, so at times like that it was good to have people with me, to get me through some hard moments.

What were some unexpected obstacles you experienced on your journey?

The first week I had some blisters. That was painful, but luckily after a week it went better. I also almost got lost a few times, but I was always able to find my way. Luckily, I have Google Maps on my phone, and sometimes people would show me the way. So I had a few obstacles but overcame them all.

What was the most surprising thing that happened to you while you were walking?

There were a lot of funny things and surprises. A few times people were offering me food and drinks – that was really nice. One time I was eating lunch in a cafe, and I talked to the people next to me about my trip and RLS. When I ordered, they said they would pay for me; that was a nice surprise!

When I was halfway, I needed to cross a river on a ferry. A lot of truckers and people on holiday also use this ferry. I had a flag on my bag, so people recognized me and waved and cheered. It had been a hard day that day, but that cheer squad made it so much better.

Another great thing was that a radio station followed me all the way and regularly interviewed me “live” on their program. On Christmas Day, they featured my walk when looking back on memorable events in 2019.

What advice do you have for others about raising awareness?

Don’t be afraid to tell your story. When I had my diagnosis of RLS about three years ago, I didn’t tell a lot of people. It was because on the one hand, people can react in an unsupportive way; on the other hand, I didn’t want people to know that something is wrong with me.

I now know that it is necessary to tell people about RLS so that more people, including doctors, know more about RLS and can react in a positive way. My legs may be weird sometimes, but that doesn’t mean that I am. Telling my story and raising awareness brought me a lot of good things, and I met a lot of nice people.

Do you plan to advocate for RLS again? If so, how?

My plan is to keep advocating for RLS, but at the moment I don’t know what form this will take. I think there is still a lot of work to do to raise awareness and do research about RLS. Luckily, there are some great people and organizations that work hard as advocates for RLS.

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