Safety Tip: Tell 911 You Have ALS

by Miriam Davidson on Sat, 2010-05-01 14:48

Velma Yannayon, of Eastanollee, Ga., made soup for supper and had just sat down to eat when she felt herself grow faint.

She put her hands on the TV tray to steady herself, and that’s the last thing she remembers. Her husband Theodore, who has ALS, watched her topple over, knocking her soup bowl to the floor.

Theodore, who received his diagnosis in 2007, was able to move to his wife’s side and shake her until she awoke a moment later. He called their neighbor, a registered nurse, and she came to check on Velma. Although the incident turned out OK, it got the couple thinking.

“We’d planned for the times when I would need to call 911 for him, but we never thought about what would happen if he had to call 911 for me,” Velma, 53, said. Theodore, also 53, has bulbar involvement, so while he still can speak, his words are slurred and slow.

“They might think that a drunk was calling,” Velma said. The next day, she and her husband called their local 911 operation to tell them he had ALS. Now, should he ever need to call, the emergency responders will know that it is a person with ALS, and not some crank.

At their next support group meeting at the MDA/ALS Center at Emory University in Atlanta, the couple described what had happened. Everyone agreed it’s a good idea for emergency responders to know when a call is coming in from someone who cannot speak, or speaks with difficulty. One man made an important, additional suggestion: People with ALS and their caregivers should give emergency responders all the phone numbers they might be calling from, including cell phones.

For extra security, put your information in a letter, recommends Sherry Taylor, a dispatcher for the Indianapolis Fire Department and chair of the ADA subcommittee for the Association of Public Safety Communications Officials International.

Some doctors’ offices have forms for patients to fill out and send to 911, Taylor said, but it doesn’t have to be anything formal. A brief note will do.

Theodore Yannayon has a recorded emergency message on his DynaVox speech device, as long as he can get the phone near it and push a button. But in case he can’t, his local 911 operators are now prepared to receive his call.

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Miriam Davidson
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