Symptom Awareness: Keeping Your Cool

By Shelley Peterman Schwarz

A Warm Reunion

A few years after I was diagnosed with multiple sclerosis (MS), my husband, Dave, and I went back to his childhood home for his 20th high school reunion. The room was packed, the music was deafening, the air was warm, and I was expending great amounts of energy trying to communicate with those around me. I could feel myself wilting by the moment. Not wanting to interfere with my husband’s ability to reconnect with his high school pals, I casually wandered off to a table away from the “maddening crowd,” where I sat drinking glass after glass of water.

Then I needed to use the facilities. My legs felt like they weighed 1,000 pounds each as I walked to the ladies room – my energy draining out of me like a balloon with a slow leak. Maybe, if I sat in the air-conditioned car for a bit, my strength would return. I asked the wife of one of Dave’s friends to join me.

The air outside was like a furnace blast; the heat index was more than 100. Walking through the unpaved parking lot, on heels that were too high given my instability and weakness, was very stressful. I would have fallen three times if my friend hadn’t been there to catch me.

The air conditioning in the car was a Godsend. I started to feel better. When dinner was served, I went back into the hall. Thankfully the loud music was replaced by the evening’s program, and once the sun went down, the building’s air conditioning did a better job of cooling off the room.

Toward the end of the evening, small groups broke off and made plans for after- parties. But I had hit the wall. As much as I wanted to, and I did want to, I couldn’t do one more thing. I needed to go home! I felt awful about putting a damper on Dave’s plans, so I suggested he take me home and then meet up with his buddies afterward.

By the time we arrived home, I didn’t have the strength to walk. Dave had to carry me into the house, undress me, help me in the bathroom, and get me into bed. I was as limp as an overcooked noodle and fighting back a boatload of tears. I was frustrated with my body. I was angry that I wasn’t able to keep up – after all, I was still in my 30s! And I was scared; nothing like this had ever happened before.

That was my first experience with what heat can do to a person with MS. Thankfully, I recovered within a few days, and over the more than 20 years that have followed, I have never experienced as severe of a reaction to the heat. I believe that’s because I took the issue of getting overheated, and how it can affect MS, very seriously. Perhaps some of the things I have learned to help me keep my cool will help you too.

Understanding the Effects of Heat

Warning Signs
You may not be aware that the heat is affecting you. Here are some signs to watch for:

Overall muscle weakness
Significant loss of energy
Irritability
Headache
Body aches
Nausea and/or lack of appetite
Thought processing becomes impaired; you feel as though you can’t think or find the right words; you may even have trouble remembering how to do things
Signs of dehydration include dry, sticky, or cotton mouth; low or no urine output, or concentrated urine appears dark yellow; not producing tears; or feeling lethargic
Excessive sweating or not sweating at all

Medications and Heat

The medications you are taking can also affect how you respond to heat. Medications may cause dehydration or affect the body’s ability to perspire or regulate body temperature.

Consult your prescribing physician or the dispensing pharmacist to learn about any heat-related side effects that your medication may have. (A helpful tip to remember is that the telephone number of the pharmacy is on the prescription bottle’s label.)

Being Overheated – What Does It Feel Like?

For me, the warmer I feel, the weaker I feel. It’s an overall weakness; I’m unable to move quickly. Expressing myself and processing information becomes a struggle; I feel “mushy-headed.”
Every part of me moves in slow motion, especially my thinking. And when you add loud background noises, music, conversation, or frenetic environments with lots of visual activity, you can almost see me melting down like a scoop of ice cream on a hot summer’s day.

What about Fever… or Hot Flashes?

Heat-related problems can occur when your core temperature goes up, such as when you have a fever. Your core temperature can also rise when it’s hot outside, and even a few minutes in the heat can sap your strength. And when you add in high humidity, even less time is needed before you feel the effects.

My hot flashes were like a wave of warmth that came on slowly, built to a few seconds of intense heat, and then subsided gently and disappeared. For other women, hot flashes can be overwhelming. These too can bring on the temporary effects of overheating.

Will Cooling off Make Everything Fine?

Family members and friends may think that once you are out of the heat and in a cooler environment, you’ll perk right up and feel fine. But that hasn’t been my experience.
Finding a quiet, peaceful environment where I can escape the sensory overload works best for me. Getting a cool drink and finding a place to close my eyes, while listening to the sounds of silence, is usually the most effective strategy. Sometimes taking a nap can help. After a few hours, I feel like I am back in control.

Cooling Off With Cold Drinks

MSAA’s Chief Medical Officer Jack Burks, MD, notes that many of his patients can get some relief from the heat and related fatigue by sucking on ice chips. Another option that can be beneficial is to sip on a “slushy” type of frozen drink, which can be made in a blender with fruit, juice, and ice cubes.

Frozen drinks may also be purchased at a convenience store (often under the brand names of “Slurpee®” or “Icee®”), at a restaurant, or at a fruit-drink stand. He notes, however, that individuals need to be careful not to take in too much sugar, caffeine, or calories, when having these types of drinks.

Dr. Burks does not advise drinking something that is very cold too quickly – as this sometimes causes a momentary headache. But he does find that many patients may get help cooling down by sipping on a frozen drink or sucking on ice cubes and allowing the tongue to cool down, which may affect how quickly one’s temperature may be brought back to normal. He points out that the difference may only be about one-degree Fahrenheit.

He also stresses that patients who are feeling overheated do not bounce right back as soon as they have a cool drink or move to a cooler environment. Individuals with MS and their family members need to recognize that cooling down and feeling better happens over the course of hours, and no one should expect to return to normal in just a few minutes.

Tips for Keeping Cool in Warm Weather

Stay hydrated:

Sip cool water, not cold, throughout the day. This will allow your body to gradually absorb and use what you drink, rather than having a big drink all at once that may cause you to run to the bathroom.
Carry water with you everywhere. To ensure that your water is clean, use non-porous polycarbonate (sports bottle) or stainless steel bottles and wash the bottle with soap and hot water every night, paying special attention to the areas at the lip and inside the cap.
To have cool water with you when you’re out and about, fill a water bottle three-quarters full and put it in the freezer. By doing so, the water stays cool long after you take it with you into the warmer temperatures. If your hands are sensitive to the cold or if your hand strength is weak, slide the bottle into a sock, which will absorb the sweat from the bottle as the ice melts. It not only buffers the feel of the ice-cold water, but also helps to prevent the bottle from slipping out of your hands.
Drinking chilled fruit juice is another option, especially if you are not eating for a long period of time. This helps to keep your blood sugar from going too low, although you need to be careful not to overdo on the amount of juice and other sugars you are taking in, especially if the heat has made you extra thirsty.
Avoid caffeinated beverages, as these can contribute to dehydration.

Eat cold foods:

Freeze grapes, blueberries, and other bite-sized fruit for a cold, refreshing, and nutritious treat. Just rinse, drain, spread them on a cookie sheet, and place in the freezer. Once frozen, put the fruit into a plastic bag in the cooler and take along on trips, to the park, or to a ballgame.

Plan your activities around the weather

Plan ahead and use some type of cooling apparel or accessory to help stay cool, such as a cooling vest, bandanna, wrist bands, cold pack, or cooling pillowcase. Many of these products are described in the following section on cooling products and clothing.
Stay indoors on really hot days and during the midday when air temperature is hottest. If you don’t have air conditioning in your home, try to keep the house as cool as possible by pulling down shades to block direct sunlight, and also use a fan. On dangerously hot days, make sure family and/or friends know you are without air conditioning; you may want to stay with someone until the extreme heat subsides.
When shopping, if possible, arrange to have someone pick you up and drop you off at the door to avoid walking across a hot parking lot. Also, going to an air-conditioned mall rather than an outdoor strip mall can help you to stay cool. Planning activities in an air-conditioned environment, such as going to the movies, can also be a fun way to avoid the heat.
Your car can reach high temperatures by just sitting in the sun. Before you begin to drive, if at home and in a safe place, you may want to allow time to put your windows down and leave the door open to let the hot air out and get the air conditioner running. You need to be careful, however, that no children can get into the running car, and to make sure that the car isn’t put into gear while the door is open.
Avoid or be extremely cautious when using hot tubs, swimming pools with warm water, saunas, hot baths, and showers. These can raise your body temperature and cause weakness as well as other heat-related symptoms. Always have someone with you when swimming or using a hot tub or sauna.

When you must be out in the heat…

Find a shady place with a cool breeze.
If the kids are playing in the water, join the fun or dip your feet in the pool.
Protect yourself from the sun by wearing white or light-colored clothing that reflects rather than absorbs heat; wearing a hat can also help. For extra cooling, you might try placing a small Zip-lock®-type (re-sealable/watertight) plastic bag, filled with frozen peas or corn, under your hat.
Use an umbrella to provide shade.
Pack ice cubes in medium-sized re-sealable (and watertight) plastic bags and place them on top of canned or bottled drinks in your cooler. If you run out of cold drinks, you will have extra water (that is still clean) in the bags after the ice melts.
Place two small, damp towels in a re-sealable bag and keep it next to the ice in your cooler. When you need a cool cloth, take one of the towels out and use it to cool down. As the towel you are using becomes warm, switch it with the cool towel still in the bag – this way you will always have a cool, damp cloth available.

If you find yourself overheated…

Cool your body fast by applying ice, cool compresses, or a water bottle filled with ice cubes and water, to areas of high blood flow – such as the forehead, back of neck, low back, wrists, ankles, or underarms.
An easy ice pack can come from using a package of frozen vegetables (such as peas or corn kernels) – just remove the package from the freezer, wrap it in a damp cloth, and apply. If using a bag of vegetables as an ice pack, marking it with a permanent marker will let others know that these vegetables should not be used for a meal, since they’ve been thawed and re-frozen for later use.
Place your hands and wrists or feet in cool or cold water. For example, a friend of mine often exhibits artwork at outdoor art shows. When the weather is hot, she briefly submerges her feet in a cooler of ice water*. She says it cools her off quickly and the effects last for almost two hours.

*Please be extremely cautious when using ice or ice water directly against the skin, especially for individuals with numbness. Ice and ice water have the potential to cause ice burns, if left directly against the skin for more than two or three minutes.

Bathing or showering in cool water is recommended to keep one’s body temperature down. Start with warm or tepid water and gradually increase the coolness, giving your body time to adjust.
Find a cool environment and lie down to rest. This gives your body a chance to recuperate.

Products to Keep You Cool

Chillow® is a cooling pillow that uses water to absorb and dissipate the heat your body emits, leaving a cool sensation. Simply fill the Chillow with water to activate the cooling reaction, press out any extra air, and slip the Chillow into your pillowcase. This cooling product may also ease the pain and discomfort of headaches, back pain, sunburn, and hot flashes – helping users to enjoy a better night’s rest.

Chillow is a product of Soothsoft Innovations Worldwide, Inc. and is available at pharmacies. For more information, call (888) 244-5569 or visit www.chillow.com. The cost is about $40.

The Coolband™ body-cooling wristbands include two terry-cloth wristbands and four ergonomically designed, freezer gel packs. Simply freeze the packs, snap them into the specially designed pocket, slip over your wrist, and you will have soothing cool temperatures on your wrists for several hours. Two extra Freeze-N-Go™ gel packs go in the freezer or cooler until the first set is no longer cooling. With its curved design, the Coolband may be worn on your forearm just above the wrist, and will not interfere with wrist activity – including tennis or golf. Wristbands may also be used to “ice” an injury or condition, such as carpal tunnel syndrome.

The product is offered through Cool Therapy, LLC. They may be contacted by phone at (866) 272-COOL (2665) or online at www.coolbandcity.com. The cost is about $20.

Katabrella® is a flexible umbrella arm which attaches to almost any conventional portable (folding) umbrella, providing hands-free protection from the sun (and rain). Simply wrap the curled Katabrella arm to fit over your shoulder and it supports the umbrella for you.

This product is made by The Peterson Clinic, LLC. For more information, visit www.kataburera.com. The cost is about $15.

The Misty Mate COOL BLAST™ Mister is a personal air cooler that is an easy and portable way to cool down at work, at home, or when outdoors. Fill the Misty Mate™ canister with tap water, close, and pump to pressurize. It sprays a fine mist on or near your skin, creating a cooling sensation. Several other misting products are available, including a large Mist-N-Shade umbrella that may be setup outdoors and attached to a hose for continuous mist and shade. The product may reduce the immediate air temperature by as much as 25 degrees.

Misty Mate Inc. may be contacted by phone at (800) 233-6478 or online at www.mistymate.com. Sale prices at the time of this article ranged from $15 for the Cool Blast Mister to $40 for the umbrella.

Battery-operated personal fans can tuck into your purse or pack to provide a cooling breeze wherever you go. They are available at most drug or discount stores.

Clothing to Keep You Cool

Akemi, Inc. makes body-cooling vests, neck scarves, bandanas, seat cushions, foot wraps, mitts, and wrist bands designed to cool different parts of your body through evaporation. Each Body Cooler® product is manufactured with special compartments containing non-toxic copolymer crystals. To activate the cooling, you soak the polymers in water for 20 minutes, pat the item dry with a towel, and apply to your skin for fast cooling relief. The crystals absorb up to 400 times their weight and keep cool for a day or two.

Akemi may be contacted by calling (800) 209-2665, or through their website at www.bodycooler.com.

Heat Relief Depot™ offers a wide variety of cooling products for individuals with MS. One of these is the MiraCool™ fishing hat, a vintage-style reversible bucket hat to keep your head cool. MiraCool Cooling Crystals encased within the top of the 100-percent cotton fabric absorb and hold up to 1000 times their weight in cool refreshing water. The crystals work in combination with the evaporation process, so when worn against the head, cooling sensations are passed to pulse points and carried throughout the body. Just soak in cold water to activate and wear it wet or dry.

The MiraCool fishing hat and other cooling hats are available through Heat Relief Depot, a division of BioChem Corporation, Inc. They may be contacted by calling (877) 879-1450 or by visitng their website at www.heatreliefdepot.com. Product prices for the hats range from $9 to $27.

The Polar Body Cooling System Kits help give relief from the heat through a series of cold packs inserted in various pieces of clothing. They are designed to be lightweight and comfortable, while worn under or over your clothes. Each system kit includes: fully adjustable vest with Kool Max® cold packs; two wrist wraps with cold packs; a neck collar with cold packs, and an extra set of cold packs to keep in reserve.

The kits are available from Polar Products, Inc. They may be contacted by phone at (800) 763-8423 or by visiting their website at www.polarsoftice.com. A variety of cooling items may also be purchased separately.

The Cool Shirt® MS Therapeutic Cooling System is an active-cooling system specifically designed to meet the needs of the MS patient. The poncho is easy to put on and comfortable to wear. It includes a specially designed head and neck section that offers fast and effective cooling for the user. The cooling unit has a large handle for easy carrying and a temperature control that allows the user to adjust the temperature to their specific needs. The system comes complete with the poncho, the cooling unit with temperature controls, an eight-foot insulated hose with dry disconnects, and a 110-volt adapter.

This product is offered by Shafer Enterprises, LLC. They may be contacted by phone at (800) 345-3176 or online at www.coolshirt.net.

Silver Eagle Outfitters offers several products made of a unique layering of three super-absorbent fabrics which, when soaked in water, activate a cooling reaction. One product is the “Do-Rag.” This has a bandana-like design that keeps your head or neck cool for several hours. Just soak the Do-Rag in water for three to five minutes, wring out, and wear it on your head or neck. The cost is $15.

Another product is the New Generation Classic Cooling Vest. After the cooling reaction is activated, the vest will be noticeably cool to the touch for several hours. This is especially good for people who are in hot environments for extended periods of time. The vest is available in men’s and women’s sizes, from size small to 4X. Silver Eagle Outfitters may be reached by phone at (888) 672-6963 or through its website at www.coolingapparel.com.

The StaCool Vest™ Body Core Cooling System uses high-quality, durable materials, and four easily replaceable ThermoPaks to cool your body core comfortably. Each lightweight “Under Vest” offers up to three hours of cooling per ThermoPak set. A spare set is also included for a total of eight ThermoPaks per vest. It is available in sizes XS through XXXL. A child’s vest and an industrial vest are also available.

The vest is available through StaCool Industries, Inc. For more information, they may be contacted by phone at (866) 782-2665 or online at www.stacoolvest.com.

Steele Inc. offers the SteeleVest® Body Cooling Comfort System. This is a vest that contains five special pockets – two in the front and three in back — which hold starch-based gel ice packs to keep you cool. The cooling gel packs, which can be frozen and refrozen, stay cold for up to four hours. The SteeleVest conforms to your body for a comfortable fit and has open sides that do not restrict your range of motion. The vest weighs five pounds with all five frozen packs in place.

Steele Inc. may be contacted by phone at (888) 783-3538 or through their website at www.steelevest.com. Other cooling items are available.

Special clothing from Sun Precautions® protects you from the skin-damaging effects of the sun. Made of Solumbra™ fabric, the clothing features a full line of hats, gloves, shirts, pants, and skirts. These items are lightweight and vented to keep you cool, and the special fabric provides all-day 30+ SPF UVA and UVB sun protection – blocking more than 97-percent of the rays.

Sun Precautions may be contacted by calling (800) 882-7860 or by visiting www.sunprecautions.com.

– Edited and portions written by John Masino

NOTE: MSAA offers a Cooling Equipment Distribution Program, but certain income and other limits apply. For more information, readers may visit www.mymsaa.org or call MSAA at (800) 532-7667. Callers may dial extension 130 to request a Cooling Equipment Distribution Program application.

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