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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 5 months ago by Tracy Odell.

  • Author
    • #22626
      Alyssa Silva

      It’s one thing for someone with SMA to get coronavirus. But what happens when a parent or caregiver to someone with SMA is at risk?

      My father was at church with a family friend recently. Two days later, she started experiencing cold symptoms. Five days after that, she had found out she was exposed to coronavirus and was quarantined. Fortunately, she doesn’t think she had it. But it was enough to scare us all as my parents are my main caregivers.

      Are you taking extra precautions to stay healthy for your loved ones right now? If so, what are they?

      Coronavirus or not, we are arguably TOO careful during cold and flu season. So while this new pandemic is instilling some fear in us, I’m not sure there’s much else we can do. Would love your thoughts.

    • #22630
      Tracy Odell

      I am trying not to overreact but I still want to be sensible regarding universal precautions. I have downloaded videos showing the proper way to wash one’s hands which I will show to my various attendants. (Nine different people are in and out of my house during the week, each for “mini shifts” ranging from one hour to four hours and three overnights.) I have watched how they watched their hands: They are quick and not very thorough. Being thorough can help protect them in a variety of environments – including my home.

      If I was to be exposed and quarantined, none of my attendants would feel comfortable to come and assist me, I fear. Everything would be left up to my husband to do and if he became ill – he might not be able to look after himself, let alone me.
      I feel that odds are I will escape exposure. Even so, I try to be as prepared as I can be: utilize good handwashing practices, avoid shaking hands etc.

    • #22631
      DeAnn R

      One of my full-time PCA’s just went to Vegas. It makes me nervous, but like you said, we’re already being cautious. There’s no way she’d agree to time off just because she traveled. Plus it’s not a “hot zone” that I’m aware of. I think I’m going to talk to my doctor to get a refill of my nebulizer that I use when I do get sick. At least I’ll have one extra tool in the toolbox. Another worry I have is my Mom. Although she’s healthy, she is 67. Can’t lie, this has me on edge.

    • #22638
      Halsey Blocher

      Like you said, there’s probably not much to do that we aren’t already doing. We’re just really trying to avoid touching anyone and hand washing is going into overdrive. I don’t honestly know what I would do if my caregivers got the virus. Particularly my mom. She’s one of the only people that knows every part of my care.

    • #22640
      Tracy Odell

      I’m with you, Halsey. If none of my attendants could come, I would rely on my husband, but if he got sick or injured, I would be in dire straits.

      Everyone is just trying to keep things in perspective. I’m sharing information with my attendants as it becomes available – such as the extra effort our public transit is making to keep services sanitized.

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