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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic contains 3 replies, has 4 voices, and was last updated by  DeAnn R 4 days, 6 hours ago.

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    • #21207
       Brianna Albers 
      Keymaster

      Hi everyone!

      I wrote my November column early, so it’s available to read right now. It’s a personal one, but ironically, I enjoyed writing it. I feel weird talking about my “nighttime anxiety,” like I’m overreacting or something, so it helped to put things into words. Here, I was able to take a step back and go, “Wow, yeah, no wonder I have trauma.” Ha!

      I was recently talking to Alex Dacy of Wheelchair Rapunzel fame, and she mentioned that she struggles with similar fears. Do you ever wonder what would happen to you if something happened to your caregivers while you were in bed? I’ve looked into all sorts of emergency technologies, but I can’t necessarily utilize them if I’m not in my chair, so I welcome any and all suggestions.

      There are definitely some content warnings for this column, by the way: anxiety, death, and catastrophic thinking, among others. Look after yourself!

    • #21241
       Tracy Odell 
      Participant

      Hi Brianna,

      I like to have several backups when I’m in bed. I’d never at home alone if I’m in bed. I feel too vulnerable.

      I use a CPAP machine at night and recently was recommended to go to a full face mask. I found out that it muffles my voice and made it impossible for me to call loud enough to be transmitted by the baby monitor so my attendant could hear or to use my backup Google device or the phone that I can voice-dial — at least if I am laying on my right side. Even with my husband sleeping beside me. I was not able to be heard loud enough to wake him. So – so much for therapeutic recommendations! I could not sleep a wink if I didn’t have a way to call someone when I need to be turned in the night between 1 to 3 times!

      The fears you raise are VERY real! True story: When I was in my 20s and had not yet experienced all the things that can’t go wrong, my attendant had a stroke right in the middle of putting me to bed! I did not have my phone beside me and was unable to call for help for her (and me). I kept calling to her and finally, she was able to answer even though she could not speak clearly at all. I asked her if she would be able to get to my phone so that I could call for help for her. Because the stroke affected only one side of her body, she was able to drag herself to my phone, yank on the phone cord near the floor which made it land on my bed. I was a lot stronger then so I was able to pick up the phone and call for help.

      Because of that experience, I think I aged about ten years, but also became ten years wiser in the process. I’m never without at least two ways to communicate with the outside world whenever I’m home alone or in bed even though there is at least one other person in the house with me.

      Your scenarios are indeed scary, but you know what? They help us make safety plans with redundancies in case things go wrong – power goes out, etc. so these fears are in fact a survival tool. Use them, just like you use every other tool at your disposal.

    • #21246
       Halsey Blocher 
      Participant

      First of all, this is really well written! You did an amazing job of explaining the thoughts that run through your mind and how they make you feel. These scenarios make sense too. I’d be lying if I said I have occasionally come close to giving myself a heart attack thinking about these kind of things. The thing that really scares me is how do I know that something actually has happened? How do I know that my parents aren’t just really tired or maybe their sitting on the back porch watching the sunrise? Maybe my nurse accidentally fell a asleep of the monitor stopped working? I have an Alexa device by my bed and she understands me well, but I don’t want to end up calling for help if nothing is actually wrong. That would be fairly embarrassing.

      Unfortunately this kinda of things will probably always worry people like us at least occasionally. But I’m glad that writing this sounds like it was kind of therapeutic for you.

    • #21255
       DeAnn R 
      Keymaster

      I think these scenarios run through our minds a lot. One time I had a PCA leave in the middle of her overnight shift. I didn’t know where she went or if she was coming back. Turns out she just ran to the gas station down the road to grab a snack. I informed her that was unacceptable. Honestly though, I’ve never had much anxiety about it. Maybe I should because I have been stranded before. In college I never had an overnight PCA and twice the morning one didn’t show. One time I had my phone, but the second time the phone battery died. Luckily I called out to the neighbor when I heard her walk by and she called the agency for me. It’s nerve-wracking, but in all reality with the technology now it’s unlikely we’d be stranded for too long.

      Like Tracy said, these experiences have taught me to be more prepared. Cell phone, check. Landline, check. Alexa, check. Google Mini, check. emergency alert button (that I should keep on me but just keep nearby,) check. Service dog, check. Great neighbors, check. Cat to keep me company if I do get stranded, check. Bring on the apocalypse. Okay, maybe not. I still couldn’t manage during an extended power outage. That leads me to what does keep me up at night. Can anyone tell me how after several years of the Walking Dead they can’t restore the power grid?

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