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    • #16749
      Jodi Enders

      Myasthenia gravis symptoms are known to be triggered by the heat commonly. And commonly, the effects of the heat and temperature changes are much more challenging for the body of an individual with MG to endure.

      Have you used any cooling device if you live in/have traveled to an area in the heat? Including cooling neck scarves, hats, vests, handkerchiefs, and more. Do you have any favorite types or brands that you recommend to our community based on experience?

    • #16793
      Dave Hall

      I have a small farm outside of Houston, Texas. So yes, I have a lot of heat and humidity. I have sold my duck eggs at a farmers market in Bryan, Texas. Most of the time the heat is not an issue since the market opens at 8:00 AM and we are done at noon. To make sure I stay cool, I have made a small cooling box. Just a small styrofoam ice chest in which I put several inches of ice cubes and cover them with water. On one end of the lid I cut a couple of three inch holes for pvc pipe to be the directors of the cool air. At the other end of the lid I cut a larger hole that matches the size of a small (12 inch) battery powered fan. I can turn on my cooling box and sit in a cool breeze. It has worked for me.

      • #17079
        Sheila Troiano

        I live in NJ which is unpredictable in the weather. I also find the humidity is worse than the heat. Yes, a large glass of ice water helps. It takes more than that when I decide I’ll do a whole day of gardening outside because it’s my only day off that week and it’s not raining outside. Last month, I pushed to hard and found myself unable to climb the steps on my deck to get back upstairs. I had to call my son to get me ice water and the hose. It helps when it’s hot to keep a hose nearby to cool you down. Cold showers, although not that pleasant, when you push too hard can be beneficial to restoring muscle strength. Cooling towels help. I freeze wet washcloths and place in plasticity.  bags and stack in the freezer. Carry them in the bottom of my cooler when I go to the beach. Using these allows me to spend more time at the beach with my sister. At home, I try to keep the thermostat at 71 in the summer. I constantly battle my husband who says we are gonna go broke in electric costs. Are you kidding. I tell him, ” it’s that, or my MG is harder to deal with in the summer. Would you rather I suffer?”  I’m not trying to make them uncomfortable, I’m just trying to survive and thrive with MG .

    • #17094
      Carrie McDade

      Has anyone tried a cooling vest from listed on the website? I’m wondering if it is comfortable and worth the price.

      • #17152

        I use a vest I bought from Polar Products. It holds 9 gel ice packs. It’s not uncomfortable; but loading and unloading the packs can be tiring for me. It weighs about 4 pounds; but makes a huge difference in my level of heat tolerance. I’ve also noticed better heat tolerance with a lower dose of prednisone.

    • #17108
      Amy Cessina

      I’m also in New Jersey and find humidity worse than heat. Heat hasn’t bothered me much. My normal body temp is pretty low due to hashimoto thyroid (even though I’m stable), so I’m usually chilly. I do love the winter though since I do that cold training/exercising (Wilhelm Hof method I believe) which really gives me energy.

    • #17126
      Ann Marie Hetrick

      I am with you Sheila. The humidity really does a number on me along with the heat. I too keep my thermastat set at 71 but I turn it down to 68 when I go to bed, it is more comfortable for me to sleep. My husband says the same thing and complains about being cold. I tell him he can put more clothes on there is only so many I can take off. The gas bill in the winter is better because I keep it low then too. I can not function when I get the slightest bit to hot.

    • #17178
      Ronald E. Clever

      My house, and I say it that way, because I pay the bills even though my sister and nephew live with me since the pandemic lost them their jobs, is always kept at 66 – 68.  I would rather pay the extra money and be comfortable than not.  Luckily for me they don’t mind.  I am thinking of getting one of those personal fans that fit around your neck.  I think the extra breeze would be welcome on very humid days.  Living on the East Coast it really is the humidity that wears me out.

    • #17188
      RINA NEL

      I have only got a fan, I live in a caravan and today it reashes 35° C here so I will go for my first swim after Winter break.

      So guys wish me luck.

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