We are well into the dog days of summer, and here in the Midwest it has already been a hot one, with few prospects for cooler days on the horizon. Even a few minutes outside can be draining, and the prospect for fatigue is real for everyone, especially for people with ALS.
“As a long-time St. Louisan I have lived and breathed these hot and humid summers for many years, just a little more than 40! While I should be used to them by now it always seems to surprise me when spring turns to the full on summer and the air gets heavy and thick,” says Anna Zelinske, ALS Association St. Louis Regional Chapter Director of Programs and Services for Patient Care. “I think we all need to be sure we pay attention to our hydration and take the heat and humidity seriously.”
The best advice for everyone to beat the heat is pretty clear—avoid it when possible. Staying inside, ideally with air conditioning, when heat advisories are posted is ideal. But for many of us, including many of those with ALS, that isn’t always entirely possible. So if you cannot entirely avoid the heat, here are some suggestions for not allowing something uncomfortable to turn into something dangerous.
Pace Yourself—Move slowly and take frequent breaks if you are in the heat for a prolonged period. If at any time you become short of breath stop what you are doing and rest. Plan out your activities beforehand, gather everything you’ll need before you start, and alternate activities with periods of rest. And don’t hesitate to ask for help; we all need some from time to time.
Let Assistive Technology Assist You When Possible—In many cases, there are a variety of assistive devices that can make tasks easier and less taxing in hot weather. If you have trouble walking, don’t resist getting a wheelchair to make movement easier. A motorized wheelchair can spare you the exertion of manually wheeling around in a standard model. If you are interested in finding out what kinds of assistive technology might be helpful for you during these hot months and beyond, talk with your Care Service Coordinator. If you don’t yet have a Care Services Coordinator, please register with our Chapter.
Be Sure to Maintain Your Daily Nutritional Requirements—Your body needs fuel and may be using more energy if you are exerting yourself during hot and humid conditions. Also, be sure you are getting enough fluids to stay hydrated. If you are experiencing weight loss or feeling more tired than normal you may want to consult with a dietitian. As always, you can start with your Care Service Coordinator with any concerns.
Try to Maintain a Consistent Sleep Pattern—Not only does a full night’s sleep help with your stamina and mood, but having a consistent sleep schedule can even out the peaks and valleys you might feel during a hot day. Talk with your doctor if you having difficulty sleeping or not being able to sleep through the night.
Clearly, the above suggestions are good ideas not just when the thermometer inches up over 90, but all year round. But excessive heat can be dangerous, and we all must guard against something that starts as being merely uncomfortable turning into something more serious.
Whether you are enjoying the heat or are looking forward to cooler nights and a slight nip in the air, summer in St. Louis is here for a while longer. Enjoy these long summer days, but be careful, and be safe. ALS does not stop, and neither do we.