Providing Information on Cooling for those with MS
Personal Story
Louise Zimmerman
Louise, wearing an active cooling garment.
“Turn down the heat!” I found myself saying. My family was astonished. What had become of the cold-natured person they had always known? In fact the cold-natured person was still there—especially tending to feel cold in the fingers and toes—but a new allover feeling had arrived since I’d undeniably become a person with multiple sclerosis. Along with MS I had become acutely sensitive to even slight changes in my body temperature. And the equation was simple: hot=feeling MS symptoms increase; cool=feeling fewer MS symptoms (sometimes none at all).
As a newly diagnosed person I began educating myself about the disease. Watching a video from the MS Society lending library, I was drawn by the mention of a pilot study going on in Seattle, Washington involving cooling MS patients with a personal cooling system (PCS) while the participants exercised on stationery bikes and other machines. I was dying to exercise again but getting warm from exercise made me feel weak! I had found no sources of practical and specific information among MS support groups or literature addressing cooling and exercise. I write this hoping others will not have the difficult search I had to gain use of a PCS (also called an ‘active cooling garment’) or other simple cooling strategies. Staying cool has changed my life with MS.
I was keen to share this discovery but a dilemma seemed to be how to let people who could use these life-changing strategies know about them. Of course I immediately tried to tell others with MS about active cooling, but few, it seemed, had ever been introduced to the types and significance of cooling, and medical providers were uninformed about the benefits beyond a generaql admonition not to get too hot. It was like hitting a wall. People were not hostile to the idea—they just couldn’t grasp how profound the effects could be. The exceptions were the few individuals I could invite to my house to try the cooling garment I had purchased for myself. Those people needed no convincing of the effects! Most felt better after about half an hour and the effects lasted for hours: they were able to understand that it isn’t just about how hot it is outside. Hot external temperature makes symptoms worse, of course, but cooling relieves symptoms in the middle of winter also! As for me, I was able to folk dance again as long as I cooled beforehand. After putting on the cooling garment, I was able to work in the afternoon. Without cooling I could hardly walk across the room at that time of day.
I have talked a lot about ‘active’ cooling, and truly the benefits are dramatic. But cooling in general has been increasingly incorporated into my life. By ‘cooling in general’ I mean, for example, that I have a bowl of multicolored neck wraps purchased from a sporting goods store always ready to slip in a ziploc bag and take with me, because I know from experience that two hours into the movie, or dinner party, or class I may feel less alert or more fatigued and need a boost. I don’t drive alone without bringing one in the car. A ‘passive’ vest, the kind that take ice pack type inserts, has proved great for all day or weekend trips when the ‘active’ garment would be too bulky to take along. Wrist wraps are great for long walks. I’ve developed the habit of drinking ice water—even that has beneficial, if short term, effects! Ninety percent of people with MS are heat-sensitive, but not all to the same degree. It is one of my main symptoms, so active cooling and many other methods are essential for me, but anyone with MS can enhance their lives by paying attention to staying cool and finding what works for them. We hope this site helps!
