6 major marathons, but PSP now slows her down
Carlota Lee
Vancouver, Canada
Date of diagnosis: July 2019, changed to PSP in February 2023. PSP, or progressive supranuclear palsy, is progressing really fast and has robbed me of my balance and most of my voice.
Exercise of choice: I have used a Peloton as well as a treadmill to walk.
Recently I have had some bad falls, and I keep reinjuring my shoulder. This is why you’ll see me using a walker these days. I shuffle and drag my feet and turn slowly. I’ve also lost my rhythm, which means I cannot dance, something I used to love to do.
Favorite outdoor exercise: Walking. I do miss hiking and running.
Favorite place to hike: In the woods
Toughest hike and why: Grouse Grind in North Vancouver. It’s a near-vertical 2.9 km (1.8-mile) hike up Grouse Mountain, with 2,830 stairs and an elevation gain of 2,800 feet. You can understand why “The Grind” is a favourite spot for locals to improve their fitness level in a hurry.
Most proud of related to outdoor exercise: Completing the six world major marathons (Boston, London, Berlin, Chicago, New York City, and Tokyo).
Because of bradykinesia, I can accomplish only one-tenth of what I used to. But it is what it is. Luckily, my cognitive skills are still 100%, and I will continue to do things that I love, including travel.
Outdoor or exercise gear that is a must: My runners. (Note: That’s Canadian for athletic shoes.)
Advice for someone with PD who is just starting to exercise: Just do it! Start slowly and you will get hooked on it.
Biggest challenge with PSP right now: There is a long list of difficulties that come with tasks that are repetitive in nature, like:
- Clapping hands
- Scrolling on my phone
- Marching or using my arms and legs
- Cutting up food
- Getting dressed
- Doing my hair
I haven’t been able to type well either, but I can do it slowly. My handwriting has gotten very small.
How I try to stay positive: I look at the bright side. I am still able to do many things that I love, but at a much slower pace.
Advocacy work: I organize a Mother’s Day run that raises funds for Parkinson’s and PSP.
Other interests/hobbies: I used to be an avid tennis player, so I ran a tournament.
Career field: I worked as Canada’s equivalent of a CPA.
Something the world should know: PSP has weakened my voice, and now my vision is getting worse and my eyes drier. I am sad I cannot exercise much anymore. If you are able to exercise, take advantage of it! It’s good for the mind and body.
Carlota and her husband stop for a photo while on a scenic walk. She now often uses an aid for walking.
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If you have Parkinson’s and the outdoors and exercise are part of your life, you could be featured in Unshakable Voices, too. Email unshakablehiker@gmail.com.