As summer approaches in the Northern Hemisphere, so does the heat and humidity. For many of us who live with multiple sclerosis, the summer brings with it difficulties due to heat-sensitivity. When the body becomes over-heated (regardless of the cause), it can cause a pseudoexacerbation or temporary worsening of symptoms. An elevation in core body temperature of only one-quarter to one-half degree can impair the ability of demyelinated nerves to conduct electrical impulses, commonly causing a feeling of weakness, fatigue, visual disturbances, or other symptoms.
It is important to remember that heat generally produces only temporary worsening of symptoms and does not cause more disease activity (demyelination or damage to the nerves themselves). Pseudoexacerbations are an uncovering of older exacerbations and the symptoms are generally reversed when the source of increased temperature is removed.
I am heat-sensitive and often make use of a variety of cooling techniques to deal with the increased difficult functioning in the summer.
Strategies for Keeping Cool
Keeping your core body temperature cool can assist those demyelinated nerves to function efficiently and help you reclaim those “sun-splashed days of summer.”
Here are some recommended strategies to deal with the heat:
Plan ahead. You don’t have to avoid the great outdoors, but you do need to plan wisely. However, if prolonged heat exposure makes you feel fatigued or weak, then perhaps you should avoid this situation.
Wear lightweight, loose, “breathe-able” clothing. Items which wick moisture and dry quickly are nice.
Stay well hydrated, drink plenty of water, and avoid caffeine (which acts as a diuretic and could make you dehydrated).
Icy drinks such as “slurpees” or popsicles can provide temporary relief.
Simply holding frozen items (or gel packs) against the wrists, back of the neck, or chest can provide quick relief. You can put cold towels or cooling scarves around your neck or wear cooling wrist bands to stay cool.
Some people like to use cooling products (such as vests, neck wraps, bandanas, etc.) during exercise or outdoor activity, or to pre-cool or post-cool surrounding an activity.
Stay in an air-conditioned environment during periods of extreme heat and humidity. [If an air conditioner is needed to help minimize the symptoms of MS, the cost of this equipment may be tax deductible if the physician has written a prescription for it.]
There are several types of cooling vests:
Evaporative Cooling Vests are soaked in water to charge special polymer beads built into the garment. As the water evaporates over many hours, the vest provides surface cooling. In places with high humidity (like Florida), evaporative vests do not work so well but they are typically low and light weight.
Cold Pack Cooling Vests have pocket in which to place frozen gel packs which help keep you cool for up to 4 hours. They often look like a flak jacket and can be worn under or over clothing, depending upon the design. I have one of these and often just grab a gel pack for quick chilly relief.
Phase Change Cold Pack Cooling Vests are similar to the cold pack vests mentioned above, however using a phase change polymer in the cold packs. The phase change cold packs can be recharged in the freezer, refrigerator, or in ice water to provide cooling for up to 3 hours.
Active Cooling Vests typically incorporate a coolant, often ice water, that is circulated from a reservoir by a pump system through channels or tubes embedded in a vest. There is often a hood for the head with the system also. The temperature of the circulating coolant usually can be adjusted. The system operates on batteries, house or car current. This type of system will provide many hours of cooling before the ice and water needs to be recharged.
Cooling Equipment Programs
Both the Multiple Sclerosis Foundation (MSF) and the Multiple Sclerosis Association of America (MSAA) have cooling equipment distribution programs. These programs provide select cooling equipment to eligible MS patients. I took advantage of the MSAA program when I was first diagnosed and still use the supplied I received as needed.
The MSF Cooling Program offers the practical and popular cooling vest, along with brim hats, work collars, skull-pads, wristbands, cooling pillows, and neckties. The program cycle begins on February 1 and continues through June 1 each year. All applications are confidential and will be reviewed by the grant committee. Visit the MSF Cooling Program or call (888) MSFOCUS (673-6287) to access this program.
The MSAA Cooling Equipment Distribution Program provides special cooling apparel at no charge to individuals with MS. MSAA has assembled cooling kits which include a vest, neck collar, set of wrist bands, and an extra set of ice packs. These three products hold frozen ice packs in pockets or pouches and will cool the primary points on the body. Visit the MSAA Cooling Equipment Program to access this program. Orders are processed on a first-come, first-served basis.
For numerous recommendations and links to resources regarding cooling equipment, please visit ActiveMSers:Staying Active with Multiple Sclerois website.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.