Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize now how extremely lucky I am to live in such a magnificent place with beautiful scenery, amazing weather, and unlimited resources to handle a disability. Although my town of San Pedro is not as accessible as I would like due to the number of hills and lack of first-floor living availability, it’s still doable, and I seriously have the best support system because of the community.
Many of my FA friends live on the East Coast or in cooler climates. Snow, heavy rain, or even minimal sunshine is a constant reality for them. For me, it’s a concern I never want to have. My joints get stiff and uncomfortable when it barely gets below 60 degrees. I have a hard enough time walking on concrete, so adding snow or ice to ataxia seems unbearable. Many fellow FA patients have had spinal fusion surgery — which entails placing a metal rod in the spine to help with scoliosis — so I can’t imagine what that feels like when it’s freezing outside.
It’s almost impossible to be bored in Los Angeles, which is an absolute sports mecca with multiple professional teams and a personal heaven for me. Aside from that, I also have access to the University of California, Los Angeles’ Ataxia Center. I live about 45 minutes from Dr. Susan Perlman, who helps run the Ataxia Center and has limitless knowledge about Friedreich’s ataxia. Any question I have about FA gets answered in person, and it’s pretty cool being one of the first patients to be aware of any clinical trials because of how close I am. I’m often one of the first participants to volunteer for them. Some of my FA friends have to travel hours to their nearest FA specialist, resulting in more travel plans and scheduling. It’s harder to reschedule in that situation, and sometimes distance is a deciding factor about who will participate in these trials.
The city I live in, San Pedro, is basically located at the edge of Los Angeles. Catalina Island is only a short boat ride away, and the Pacific Ocean kisses the coastline. Like every city that exists, we have our “bad parts” and problems, but that has never diminished the beauty of my town. The reason I bring this up is that the coast is my escape. The relationship I have with the sea and sunlight is something that saves me on those bad days. Observing the ocean not only helps calm my mood but also makes me realize how small my problems and I are compared to the grandness and depth of the water. Feeling the sunlight warm my body instantly makes me feel better.
Now, I’m not saying you should move here because to be honest, there is way too much traffic and the lines at In-N-Out Burger are getting too long. But I think that where you live is important to deal with any kind of problem. I am extremely lucky to be part of a tight-knit community that cares about my well-being, I’m blessed to live so close to one of the best neurology and FA specialists, and I thank God every day for the weather and the simple beauty of a coastline that can wipe away any worry. Los Angeles definitely plays a key role in how I’m handling my progression, and I couldn’t be happier being born and raised in such an awesome place.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.