BREAKING NEWS: New drug approved by the FDA for Duchenne muscular dystrophy. Learn more about this new treatment option.

Baby, It’s Cold Outside!

When it comes to cold weather and ALS, 53-year-old Pati Milewski, of Olympia, Wash., likens her experience to that of “a house with no thermostat.”

Although inability to regulate body temperature isn’t recognized as a classic symptom of ALS, decreased mobility limits the ability to stay warm by being active.

Simply feeling cold is only part of the problem. “Cold weather exaggerates the problems that come with ALS. It increases the effects, making stiffness worse and weakness more intense,” says Daryl Thorson, 72, of Brandon, S.D. Thorson received an ALS diagnosis in 2005.

To keep shiver-inducing temperatures from getting the best of you, check out the following tips, including — and especially — the nitty gritty details.

Warmth-generating habits

There are plenty of little things a person can do to generate warmth in their daily routine.

Some of these include:

  • Stretching, range-of-motion (ROM) exercises and massage to increase blood flow;
  • drinking warm beverages;
  • leaving warm water in the tub after bathing to increase humidity and ambient air temperature;
  • placing dark rugs in areas of the house where they can absorb heat from the sun;
  • leaving the oven door open after cooking;
  • staying well-nourished and hydrated; and
  • avoiding sweating or getting skin wet in cold weather, protecting skin from the wind, and wearing mittens instead of gloves to more effectively hold heat.

Milewski, who received an ALS diagnosis in 1999, suggests that those using feeding tubes fill the “kangaroo bag” with warm or hot water when hydrating. If you prefer cold water, she adds, put a dry hand towel around the feeding tube under your shirt.

Body-warming gadgets and blankets

A multitude of products provide warmth to fingers, toes, and everything in between.

Standard hot water bottles, available at any drugstore, are useful for keeping your hands and lap warm, or for toasting your tootsies in bed. (Be sure to fill bottles with water hot enough to warm, but cool enough that it won’t burn should it spill.) For more portable heat options, try socks or fabric bags filled with uncooked rice or beans. Microwave until warm, then soak up the heat.

Hand warmers commonly used in outdoor sports or for heat therapy can be air-activated (typically disposable) or activated through snapping a small metal tab that causes crystallization of a solution. This second type often can be recharged through microwaving or boiling. A third type of warmer works through the use of lighter fluid.

Warmers for hands, toes, feet and the entire body can be found at outdoors and sports-themed stores, along with heated socks, heated headbands to keep ears warm, hand muffs, and sleeping bag warmers to heat up your bed before you get in it.

In addition to common electric blankets (available most places blankets are sold), try the super-warm sleeved fleece blanket known as the Slanket (www.theslanket.com). Or zip and snap to create sleeves and a closer fit with a Biederlack CuddleWrap (301-759-3633, www2.biederlack.com).

Also, a quick Web search or visit to most outdoors-themed stores will turn up a variety of 12-volt heated travel blankets designed to draw power from your vehicle’s power outlet and keep you toasty warm when traveling.

Caution: To avoid the risk of possible burns, always make sure you’re able to remove electrical blankets and other heat products on your own or that someone remains nearby to assist you should they become too hot.

Clothing — all fabrics are not created equal

Milewski wears long underwear, or “long johns,” yearround and white cotton gloves in bed when she’s cold. She also wears layers of clothing and a hat and gloves when she goes out. Thorson also wears layers indoors.

Note: There’s more to layering for warmth than meets the eye.

The idea behind layering isn’t simply to put clothes on top of more clothes. For maximum effect, the layer nearest skin should wick away moisture, the mid layer should provide warmth and the outer “breathable” layer should keep wind and water out.

Wicking fabrics, most of which are some type of polyester, keep you dry by transporting moisture and the cooling effects of evaporation away from the body.

Fabrics such as wool and fleeces, used as middle warmth layers, trap warm air while wicking away moisture. They’re lightweight and dry easily, but lack durability and need a protective shell.

Outer layers should keep out wind and water. In additionto ordinary lightweight windbreaker-type jackets, more breathable fabrics include GORE-TEX and Cordura.

Indoors or out, whether it’s cold or you just feel that way, put these warmth-generating ideas to work for a difference you can feel.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.