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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 8 replies, has 7 voices, and was last updated by  Crystal 2 weeks, 5 days ago.

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    • #20996
       Crystal 
      Participant

      My mom said it’s gonna be a long and cold winter and suggested me asking for a bath robe for Christmas but bath robes are complicated to wear in a wheelchair. What can I ask for instead to keep warm in the house?

    • #20997
       Dennis Turner 
      Participant

      Down vest!

    • #21000
       DeAnn R 
      Keymaster

      I like shawls. My cousin crocheted me one that I love. It’s more of a triangle shape so it covers my back but isn’t so bulky in the front. Lap blankets are nice. Small enough so they can just tuck around your legs. If you know someone who’s crafty, they can get fleece from a fabric shop just the size you’d need. You can find some poncho style sweaters that are nice for in the house too. This heated poncho blanket is on my Christmas list https://www.amazon.com/dp/B074ZNM33Z/?coliid=I10LQCKD49F2J9&colid=31U54FPUQW7V6&psc=1&ref_=lv_ov_lig_dp_it Of course it would mean being tethered to one spot, and there’s probably a disclaimer about not using it if you’re disabled, but I’ll only use it when someone’s around and take the chance.

    • #21001
       DeAnn R 
      Keymaster

      Oh, I also have this angel wrap, but I see it’s sold out on HSN. Maybe you could find something similar elsewhere? https://www.hsn.com/products/soft-and-cozy-cowl-neck-angel-wrap/8745540

    • #21007
       Tracy Odell 
      Participant

      I complain incessantly about being cold until the temperature reaches about 90°F and is very humid.

      I have been told that being cold is a typical experience for those of us with SMA. We don’t have the muscle mass to generate heat, we tend not to eat as many calories which also generates heat and of course we’re not physically moving about to stay warm.

      You might want to try a hot water bottle on your lap or lower back – depending on how you sit. You can also get electric ones with low-medium-high settings. I don’t like to use this unless someone is home with me because if it turns out to be too warm, I cannot do anything about it and don’t want to risk getting burnt.

      I also use shawls frequently in the house. They help, but because I’m allergic to wool, I’m not as warm as I could be. If you can find a stylish woollen hat, you could wear that indoors as well. It definitely helps to keep me warm!

      I have an electronic thermostat so if I’m home alone, I crank the heat up really high from my pc or cellphone. Once I am warm enough, I put it back down to normal.

      I stay indoors as much as I can in the winter – which gets a bit depressing because I miss out on things I want to do. So I have to balance my physical and emotional comfort.

      I wish you a very warm and cozy winter!

    • #21013
       Ryan Berhar 
      Keymaster

      Dennis mentioned down vests which are great because they don’t restrict movement as much. I also have a Patagonia coat which I believe is down. I always struggled with coats , because they restricted me too much, but this one works.

      • This reply was modified 3 weeks, 2 days ago by  Ryan Berhar.
    • #21017
       Halsey Blocher 
      Participant

      I also really like shawls. I have several that I actually where backwards so that most of the fabric covers my chest and lap, and I drape the extra over my handle bars. I get really cold feet so I have so I have a vast collection of fuzzy socks and slippers. I’m also a fan of fingerless gloves. They don’t restrict my fingers so much but still keep my hands warmer.

    • #21029
       Patrick Lenihan 
      Participant

      I have an ActionHeat battery powered heated vest that I love. They also make heated base layers and jackets. The thing  that I like about ActionHeat vests and base layers is that you can power them with any 5 volt usb power bank. The power bank that came with the vest only last about 2 hours but I purchased a 30000 mAh power bank that powers the vest for about 12 hours on the highest heat setting.

    • #21058
       Crystal 
      Participant

      Wow thank you all so much! I’ll look into these or maybe just show all of y’all’s suggestions to my mom and let her choose for her budget. But thank you guys so so much!

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