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This topic has 0 replies, 1 voice, and was last updated 3 years, 1 month ago by Kevin Schaefer.

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      Kevin Schaefer
      Keymaster

      Last week, five SMA patients shared their tips for managing stress. Here, five SMA parents share their advice and talk about how SMA affects their lives.

      “Find ‘your people.’ There are a lot of opinions and ideas and advice in the world. All of it can be helpful, but it can also be overwhelming. When I am really stressed out, I go to the few close friends who I know understand me and my children and will give me unique, specific advice to our situation.

      “Don’t sweat the small stuff. Days can be very busy. Sometimes I feel like I never sit down between medication administration, helping to adapt a toy or playtime activity, homework, reading logs, and bedtime routines. I give myself permission to have a messy house or order pizza instead of cooking dinner sometimes if it means that I get to spend some quality time with the kids and my husband. It’s too easy to get caught up in the rat race of everyday life, especially with SMA involved, and it’s so important that we stop to breath and enjoy ourselves sometimes.” – Danyelle Sun; Milwaukee, Wisconsin

      “As a father of two SMA kids, stress is a given for both my wife and I — perhaps more so for her as she is the primary caregiver. My personal answer to those moments when the stress becomes too heavy a load to bear is my Sony headphones and a selection of meaningful contemporary Christian music that reminds me that regardless of the burdens we carry, we are not bearing the weight alone.” – Jim Berry; Myrtle Beach, South Carolina

      “When my son was younger and the stress of being a 24/7 caregiver was at its peak, I learned that as hard as it was, every so often I had to be selfish. Once a year, I would leave my husband in charge and head out of town for a weekend with my girlfriends. Only a couple of days filled with laughter and relaxation and I was refreshed and ready to get back to everyday life.” – Cindy Schaefer; Cary, North Carolina

      “For stress management, I’m into fitness. Being a mom of a busy son, I love my hour a day at a CrossFit gym where I can work out and take a mental break from the day. It not only helps if I am having a stressful day but it also helps with the physical aspect of caring for a child with SMA.” – Rio Sites Landa; Holly Springs, North Carolina

      “We just hit one year since Oliver’s diagnosis. I’m finally getting back on my mountain bike, something I felt was selfish to consider doing with everything he is going through. I didn’t realize how important it is for me to go for that ride and socialize with friends until I got back on my bike. I feel better and am a better person when I ride my bike.” – Keith Schaper

      What are your tips for stress management? Join the discussion here.

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