The NARIC staff live and work in the Mid-Atlantic region, which is currently experiencing a heat wave. Thanks to a “heat dome,” communities up and down the East Coast have seen record temperatures, even over 100°. These extreme heat events can be dangerous, leading to health emergencies like heat stroke. While anyone can experience a heat-related illness, people with disabilities may be at higher risk for many reasons. People with physical disabilities and chronic conditions may have difficulty regulating their body temperature. People with cognitive or intellectual disabilities may not recognize the signs of heat-related illness. Pools or cooling facilities may not be accessible or near public transportation. Those are just some examples of challenges people with disabilities might face in dealing with the heat.
Like many teams, we have people with and without disabilities and chronic conditions who have diverse experiences in managing their health and wellness. In our staff meeting this week, we took some time to talk about how the heat was affecting us and what we were doing to take care of ourselves and our families.
“Living with a spinal cord injury, I have to be really aware of how my body responds to the environment, since autonomic dysreflexia can make it difficult to know if I’m in the danger zone,” NARIC’s Director Mark Odum said. Mark has lived with a spinal cord injury for 50 years (as of July). “If I get really hot or really cold, it can take a long time for me to recover, sometimes days. That can leave me dehydrated and puts me at risk for all kinds of problems.” Mark keeps his air conditioning system in regular service along with fans to keep the air moving. He also has a supply of fresh water within easy access.. Mark also loves to get outside for some sun: “The big thing is to have a spot where you can go and get out of the shade to regulate your exposure. And I keep a bottle of aloe in the fridge, just in case I get a little too much sun!”
Bilingual Information Specialist Marta Garcia said, “I tend to run hot.” As someone who lives with a seizure disorder, they are at risk of increased seizure activity when they get overheated. “I try to get everything done early, before the temperature goes up. I wear loose, light colored clothing. And I carry water with me everywhere so, if I do get overheated, I can cool down.” Marta also noted that recovering from heat stress and dehydration affects more than their seizures. “If I do get overheated, it has a serious impact on my gut, and I may spend a lot of time in the bathroom the next day!”
Media Specialist Catherine Graves noted she has more difficulty with heat than cold. “Once I’m hot, forget it! It takes a while for me to cool down, although not as long as Mark. As someone with fibromyalgia, I know I’m at higher risk for heat stroke, plus these excessive heat events can cause pain flare ups. Some of the medications I take can make me more sensitive to heat and sun exposure, too.” Catherine postpones strenuous chores and activities until it’s cooler. “I’m like Marta: loose light clothing and carrying lots of water. I also like to bring shade with me. I have a chair with a sunshade if I’m going to the beach or an outdoor concert.”
Media and Information Services Manager Jess Chaiken echoed the call for loose clothing and lots of water. “I’m in my 50s so I’m experiencing menopause. I’m usually wearing a loose top or dress, something that flows in the breeze. I never leave the house without a hand fan and a bottle of water.” Jess opts to exercise outside early, either stretching on her porch or running by the Anacostia River where she can catch a breeze. She also lives with her mom, who is in her 70s. “My mom noticed she gets overheated quickly now, like 20 walking minutes in the heat and she’s lightheaded and exhausted. She got a treadmill and ergocycle so she can exercise indoors and stay in shape so she’s ready for longer walks outside when it’s cooler.”
Library Coordinator Tamie Pyle has a backyard pool and plans her pool time wisely. She aims to jump in when she is just getting uncomfortably hot, then head for the shade: “Always have a shady spot to get to and lots of sunscreen!”
Abstractor Sheila Turner noted that she retains water when it gets even mildly hot, which leads to painful swelling, especially in her hands, legs, and feet. That swelling makes her arthritis and lymphedema even more painful. “The only way to prevent it is to stay indoors and stay cool. If I have to go out in the heat, I will take extra medication, stay well hydrated, and then elevate my legs whenever I can. Sometimes it works and sometimes not.” It can be a challenge to know exactly how well hydrated you are. After the first day of her recent vacation, she woke with severe spasms. “I apparently didn’t drink enough water. After that, even though it wasn’t really hot outside, I decided not to spend my days in the sun by the pool like I planned, just to be safe.”
At the end of the meeting, we went around and gathered the tips:
- Water! Water! Water! Bring or have access to water and other hydrating drinks throughout the day.
- Plan your day to avoid the worst of the heat. Get errands and strenuous activities done early.
- Opt for loose, light-colored clothing.
- Get to know which prescription and over-the-counter medications can make it difficult or dangerous to be out in the heat and sun.
- If you are outside, look for shaded areas or bring your own shade (umbrella, sunshade, or a chair with a canopy).
- Wet kerchiefs, hand fans, and battery-powered fans can help cool you down. Some fans come with misting attachments.
We also gathered some resources from the community which may help you and your loved ones stay safe in the summer heat:
- The Model Systems Knowledge Translation Center has collections of evidence-based information resources on spinal cord injury (SCI), traumatic brain injury (TBI), and burn injury including:
- The Federal Emergency Management Agency (FEMA) shares information and resources to prepare for and be safe during extreme heat, how to recognize heat related illness, and six ways to keep pets and service animals safe.
- The National Center for Healthy Housing has a list of cooling centers by state.
- Call or visit 211 to learn about cooling centers and financial assistance for energy and water bills. In some communities, you can also call 311 to connect to local services.
- Call 911 if you think you are in danger of heat stroke or other medical emergency.
We hope you and your loved ones can stay safe and cool during this heat wave. Please contact our information specialists if we can be of any assistance in locating local resources to help you beat the heat.