Marga Hemmes (57) looks with suspicion at the weather forecast for the coming week. As an MS patient, she cannot tolerate high temperatures. Heat intolerance is common in people with multiple sclerosis. It is relatively unknown to the general public. “It’s an unmitigated disaster, the next few days can’t come soon enough for me.”
At home in Bavel, Marga now stays indoors as much as possible. “I am really dreading the heat. I cannot function and I am not burning ahead. I have trouble with my eyes, difficulty raising my arm and remembering things. Sometimes I do some shopping at eight o’clock in the morning, but I don’t go out for the rest of the day. You feel isolated because of that.”
There are about 30,000 people with MS in the Netherlands. Due to this chronic disease of the central nervous system, patients have difficulty moving, seeing or talking, among other things. These symptoms temporarily increase when the thermometer shoots up.
Not everyone experiences the same symptoms
According to Jeroen Musters, good news is from the MS association Brabant West that the additional symptoms such as fatigue, numbness of the limbs, blurred vision and concentration problems disappear when the temperature drops: “Not everyone experiences the same complaints. There are patients who do not even suffer from heat intolerance.”
Marga was diagnosed with MS 28 years ago, shortly after the birth of her youngest daughter. “My world came crashing down until I was selected to participate in a trial of the very first inhibitory drug. That saved me. A few years ago I had a serious relapse (relapse, ed.). But now the situation is stable and I have found my way again.”
Ice cold shower with water from a beer cooler
In fact, just like everyone else, MS patients are also advised to drink a lot, cool down and eat ice cream more often in the coming days. In the past, Marga decided to take it one step further. She took an ice cold shower with water from a beer cooler.
“That was an alternative method. Tap water was not cold enough so we had to come up with something. We were able to buy an old beer cooler at a cafe. My handy husband hooked that thing up to the faucet in the bathroom. After spraying myself with the extra cooled water, I felt reborn. I was able to move forward a few hours because unfortunately it was only a temporary effect.”
Benefits from understanding
In addition to physical means such as a cold shower or wearing a cooling vest, MS patients especially benefit from understanding, according to Marga. “MS, unlike a broken leg, is often invisible. I therefore advise patients to draw attention to their situation. Mention it, for example, in a work meeting with colleagues. You get tired faster, but that certainly doesn’t make you pathetic.”
–
