I have always been a hot body, putting off unnecessary amounts of heat while others around me are freezing. Since starting Riluzole, I am internal combustion hot, always. It is miserable, especially when I’m in places where I can’t control the thermostat.
MDA put out an article titled “Tips for Coping with Summer’s Heat” and one notable takeaway says:
Drink up. People with ALS should drink a liter to a liter-and-a-half of fluids on a daily basis, says Clawson, and even more when out in the heat. Water is preferred, but if thin liquids pose difficulty, substitute drinks without much caffeine, sugar and alcohol, which are dehydrating.
The ALSA has an article on their site titled “Minimizing Fatigue” that outlines many tips and tricks to navigating the “ALS Exhaustion”. I told a friend recently that I’d give anything for a hangover, because those are cured with greasy fries, bottomless dr. peppers, and ibuprofen. This exhaustion is unlike anything I have every experienced.
For me, electrolytes are my best friend. I am partial to 1L Smart Waters with a double scoop of Spark and a double scoop of Rehydrate. What started as a hangover cure on our Girls Trips, is now the difference in my hands working when I get to work vs. having to immediately take a break. It takes all the fine motor control I have left to get ready, out of the house, and to work. This is my fuel.
Another fun component of fatigue is muscle cramps, but unlike my former-athlete self, I get them from sitting too long, or sneezing, or stretching. I can almost sleep through a charlie horse, I get that many a day. You may not know this, but I am a MaryKay Independent Beauty Consultant and this title lead me to this miracle product:
This stuff is life changing. It increases blood flow, which works out the cramp. It’s a lotion rather than a cream so it’s not greasy or stinky. I never travel without it, have various bottles all over the house, and make Kenneth rub it on my feet/arms/legs/shoulders constantly.
Someone told me once about all the wonderful effects coconut oil has on your body, so each morning I run hot water over my jar and take a big ol’ swig. Not awful, but if I run the water too long it’s warm and I feel like I’m drinking motor oil. Bleh.
Loss of weight, both muscle and fat, is common as ALS progresses, and patients experience more difficulties eating, swallowing, and maintaining their bodyweight. Recent work suggests that these problems might also contribute to the course of the disease: patients who are mildly obese are more likely to live longer, and mice carrying a gene which causes ALS lived longer when they were fed a calorie-rich diet high in fat.
Extra butter, extra sour cream, extra extra extra please and thank you. I can tell a difference on the days I eat enough, and those that I don’t. Luckily, a vanilla milk shake is always just around the corner to solve all of my problems.
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