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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 4 replies, 3 voices, and was last updated 3 weeks, 5 days ago by Alyssa Silva.

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    • #24213
      Alyssa Silva
      Keymaster

      I feel like I’m one of the few people with SMA who would rather be cold than warm. The thought of wrapping up in cozy blankets by a fire than stripping down to minimal clothing and desperately searching for air-conditioned buildings sounds way more appealing to me. Sorry not sorry!

      So, the summer heat and I don’t have the best track record. I’ve always been this way, but in the last few years, it’s gotten worse. I live where the heat is mostly just humidity and not dry heat which could be a factor. But in the heat of the summer, I can’t go outside without feeling faint.

      I don’t think it’s a hydration issue as I’ve ruled that out. Perhaps it’s a respiratory issue with the humidity? My O2 levels are fine though. I’m really not sure what it is.

      Do you get lightheaded (or simply unwell in general) when it’s humid outside? I’m wondering if this is an SMA thing or an Alyssa thing.

    • #24226
      DeAnn R
      Keymaster

      I’m actually the opposite. When others are melting I’m comfortable. Humidity can bother me, but it has to be quite bad to get to me. Have you tried those cooling towels? Haven’t tried them myself, but I’ve heard good things. It might help if you wrap it around your neck before you go out in the heat.

    • #24229
      Alyssa Silva
      Keymaster

      You know… I bought a cooling towel years ago and never used it. I wonder if I still have it somewhere. That’s a good idea— thank you!

    • #24247
      Dennis Turner
      Participant

      My wife complains when i sit directly in the sun and it is over 90. Me, i love it. It is probably the only time i don’t feel chilly.

    • #24252
      Alyssa Silva
      Keymaster

      Too funny. I really am beginning to think I’m the only one who despises the heat!

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