The Heat Is On: Coping With PPMS and High Temperatures
Summer brings discomfort, even a shutdown, for those with multiple sclerosis
Oh, brother, it’s hot! How hot? Well, my thermometer hit “are you kidding me” levels. My experience with primary progressive multiple sclerosis (PPMS) has taught me that an 0.5-degree rise in body temperature is enough to cause a shutdown. Allow me to explain what it’s like when my body shuts down.
When I started my farming business, the heat was a factor, but never a problem. To deal with hot temperatures during the late spring and summer months, I wore a straw cowboy hat, a light T-shirt, shorts, and work boots. I also made sure plenty of water was around to keep hydrated, whether it was drinking water, hosing myself down, or jumping in the above-ground pool at the farm. Other than feeling it when temperatures rose above 90 degrees, I never struggled with the heat.
Since my diagnosis, I last about 15 minutes in heat before I start to lose control. I struggle to breathe, experience loss of balance, and have tremendous weakness in my legs and lower back. As the time in this environment extends, the symptoms get worse. My body doesn’t cool off, I become drenched in sweat, my eyes sting, and my hands start tingling.
This is also when I experience the psychological effects of my physical decline. I know I have to get out of this environment, but I have to finish the task I’m working on. So my temper becomes short, and I’m arrogant, belligerent, and nasty. Getting out of the extreme heat is the only solution. I must cool off.
Short-term cooling works to stop the advancement of the shutdown. Things like ice packs, cooling towels, soaking myself with a hose, and resting in the shade are all temporary solutions. The only long-term solutions are a cool shower, air conditioning, and sleep. The stress of this event tends to wipe me out both physically and emotionally. I need at least three hours to reboot.
I can’t imagine having to deal with PPMS without central air or some sort of air conditioning. From my time as a small boy to my 50s, I never had air conditioning in the house. I never needed it. Then the year of my diagnosis, we decided to have it installed. It became a lifesaver.
Without this simple adaptation, I would have no long-term solution during intense heat situations.
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