Hiker with Parkinson’s pays attention to his limits

Steffen & Christina
Germany (next to Dresden)

Note: The answers below are from Steffen, who has Parkinson’s disease. He and his wife and care partner, Christina, work together to share their perspectives on Instagram. You can find them at @unshaken_with_parkinson.  

Year of diagnosis: 2020

Exercise of choice: physiotherapy, walking, swimming and working out with Christina

Favorite outdoor exercise: walking

Favorite place to hike: Saxon Switzerland

Toughest hike and why: Last year in Austria. The trail was very rocky and uneven, and we underestimated how difficult it would be. Thankfully, everything turned out fine and we made it back safely.

Most proud of related to outdoors: I’m proud that, despite Parkinson’s, I still get outside and don’t let it stop me from doing everything. Some hikes look different now than they used to, and I have to be more aware of my limits. But I’m still out there. And that means a lot to me.

Outdoor or exercise gear that is a must: walking poles or hiking poles, and a camera

Advice for someone recently diagnosed who wants to stay active: Stay active and find something you genuinely enjoy. You don’t have to break any records. Some days you can do more, and some days less. For me, what matters is to keep starting again and do what is possible that day.

Biggest challenge with Parkinson’s right now: Right now, my biggest challenge is how unpredictable Parkinson’s has become. At the beginning of my diagnosis, I could still predict things more easily. Now, almost every day feels different. Something that worked well yesterday can suddenly be difficult today. Having to constantly adjust to that is probably the hardest part for me.

How I try to stay positive: It’s not always easy for me. I try not to overlook the good moments, even when they are small. A walk, a good day, time with Christina. And I keep reminding myself that despite Parkinson’s there are still many good things in my life. It doesn’t work equally well every day, but it helps me.

Advocacy work for PD: Christina and I share an Instagram account about our life with Parkinson’s. We share both my perspective as someone living with Parkinson’s and Christina’s perspective as a care partner. We talk openly about symptoms, changes, and everyday life, but also about the good moments. It is important to us to show how different Parkinson’s can look and feel.

Other interests/hobbies: Christina really enjoys photography, and we like traveling and spending time outdoors. I also love good food and ice cream.

Career field: I’m retired. Before that, I was self-employed and worked for an insurance company.

Something the world should know: Parkinson’s has changed my life, but it is still my life. There are difficult days, and many things are different from before. But there is still so much to laugh about, to look forward to, and to experience. I think that’s what I would like others to know.

How to find us online: You can find us on Instagram at: @unshaken_with_parkinson.

Steffen, a longtime hiker, makes his way on a trail in Gran Canaria, Austria.

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If you have Parkinson’s disease and the outdoors and exercise are part of your life, share your story in Unshakable Voices. Email unshakablehiker@gmail.com for details.