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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 5 replies, 4 voices, and was last updated 3 weeks ago by DeAnn R.

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    • #24236
      DeAnn R
      Keymaster

      Hey everyone! 

      So, I’m keeping it real is the theme of this video. I don’t think people realize how stressful the current situation is for those of us considered “high-risk.” After deciding to start the process for a new wheelchair, the situation became real.

      I’ve been doing well in my extended hibernation, but now I have to do an in-person evaluation with the DME company and occupational therapist. Can you believe the people at the OT office don’t wear masks? Hearing this has me scratching my head-figuratively, because I can’t reach my head. I’m also second guessing if I should risk it for a wheelchair. Ugh, I’m so apprehensive, but I can’t live under a rock. 

      What kind of risks do you all take?  Am I being overly paranoid? 

    • #24244
      Dennis Turner
      Participant

      Ask them to PLEASE wear a mask and gloves. This is a simple request and should be honored.

    • #24245
      Alyssa Silva
      Keymaster

      You are NOT being overly paranoid. As Dennis said, I would simply ask. This isn’t a matter of preference. It’s a matter of life and death— a little harsh, but you know what I mean. I personally would not go if they refuse to wear a mask, but I understand the need for a new chair. It’s a tough decision, for sure.

    • #24246
      Jim Schneider
      Participant

      Demand they wear masks or find a new supplier even if it means a delay!

    • #24249
      DeAnn R
      Keymaster

      The consensus is to make them wear masks.  Any advice on being assertive?

    • #24281
      DeAnn R
      Keymaster

      Update: After sending an email requesting they wear masks for my appointment and they agreed! Thanks for all the support. It was just a shock when I was told they didn’t wear masks.

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