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Tips to Survive the Summer with Multiple Sclerosis

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Updated June 23, 2014

If you’re like me, summer months have you hiding inside to avoid the heat and the symptoms which come with MS-related heat intolerance. This year, I decided after about a month of hiding that I was ready to join the fun, so I put this list together so you can get out there, too. The list is in no way comprehensive, but it does contain things that have worked for me (misting fans and window tinting), things I want to try (swap houses with someone in Iceland for a summer), as well as some suggestions sent to me by readers.

  1. Affordable Air Conditioning: If an air conditioner is needed for your home because of MS-related heat intolerance, the cost of this equipment may be tax-deductible if your doctor has written a prescription for it. Lower your electricity bill by installing window tinting, which can cut your bills by 30 percent in summer months (and gives your house a nice “cool” feeling inside) and usually pays for itself within two years.

  2. Cooling Products: There are a large variety of personal cooling products available, including different types of vests, neck bands and hats. The Multiple Sclerosis Association of America has a Cooling Distribution Program to get these products to people with MS that need them but cannot afford them. Better yet, try making your own.

  3. Eat Cool Foods: Many people report that they lose their enthusiasm for eating in the summer, preferring an ice cream cone or popsicle to a “real meal.” While that is fine for an occasional treat, it’s important to get adequate nutrition as well, so that you don’t contribute to fatigue through blood sugar fluctuations.

    Some ideas for healthy cool foods include:

    • Salads with a variety of vegetables and fruit, and some protein such as nuts, beans, eggs, fish or meat
    • Chips and vegetables with healthy dips, such as hummus
    • Sandwiches
    • Cold soups
    • Cereal topped with fruit and nuts and milk (or soy milk)

  4. Cool Down Your Core: Drinking cold beverages can really help lower your body temperature. One reader keeps a couple of plastic bottles filled with water in her freezer to take along in the car to drink as they melt (try this with iced tea or diluted cranberry juice). Another swears by Slurpees to cool her down. If you have the habit of starting your day with a hot cup of coffee, try iced coffee in the morning instead. Brew a pot the night before to keep in the refrigerator.

  5. Pre-Cool: Cool down before activities with a cold shower. Getting chilly before heading outside seems to buy a lot of time before you feel the heat. You will have to experiment with how cool of a shower you can endure and how much it helps you, but you might be surprised at the increase in your tolerance for the heat.

  6. Get in the Water: Pools with water that is 85 degrees or cooler are ideal places for exercising or just relaxing outside.

  7. Watch Heat from Appliances: I have the habit of interfering with the jobs that my appliances are trying to do. I stop dryers mid-cycle. I don’t trust my oven timer and have to poke at food to “make sure it is cooking” about 20 times. I open the dishwasher in the middle of the cycle to insert a glass.

    You can have this kind of fun, too -- just be aware of the heat factor, which can take you by surprise and make you dizzy or tired. If you are extremely sensitive to the heat or your house is already warm, a sustained blast of hot air can be just enough heat to trigger symptoms. If you can stand it, it’s probably better to let the machines do their jobs without your help. It goes without saying that legitimate uses of hot appliances, like standing over a stove stirring a pot for hours or grilling, also carry this warning.

  8. Install Misting Fans: This is a somewhat costly (but really effective) solution to help you enjoy being outdoors in summer on your patio, deck or porch. You have probably seen them at restaurants with outdoor seating or even amusement parks -- fans which blow a fine mist of water into the air and can lower temperatures in the immediate area 20 to 30 degrees. They can be mounted to a wall or overhead beams, or there are free-standing ones which sit on the ground.

    Cool-Off has a website that explains the systems well. We installed our misting fans ourselves on our patio. I have literally had to put on a sweater when sitting under the fans in 85-degree weather.

  9. Get “The Tag”: If you are ambulatory, it may not have occurred to you to get a disabled parking placard to avoid crossing blazing hot parking lots in the summer. Some of you might have a list of reasons why you don't need a handicapped tag or be resistant to getting one for fear of what others might think.

    For any of you who are sensitive to the heat, a handicapped tag can be a lifesaver during the hot months. I urge you to get one just in case you need it, rather than limiting your activities or not feeling good enough to enjoy yourself once you get to your destination.

    Learn more about obtaining a handicapped tag for MS.

  10. Get Out of Town: Clearly, moving permanently is the most extreme suggestion on the list and probably the least feasible (or desirable). However, if you are one of the unlucky people who start to “feel the heat” in mid-spring and can’t emerge again until mid-fall, it may be a quality of life issue that can’t be ignored.

    If possible, at least take vacations in cooler places to break up the summer – one option that is affordable is “house swapping,” where you simply trade houses with someone for a period of time (even the entire summer). There are plenty of websites offering this service, but the Independent Living Institute has an amazing accessible home exchange service that lets people in wheelchairs swap fully-equipped homes, many in exotic (and cool) locales like Iceland and Finland.

Sources:

Edlich RF, et al. Strategies to reduce hyperthermia in ambulatory multiple sclerosis patients. J Long Term Eff Med Implants. 2004;14(6):467-79.

Multiple Sclerosis Resource Centre, Keeping Cool.

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