As I have become aware of just how fast heat can make my breathing worse, I'm trying to figure out how to also cope with also living in East central Florida. Not only are hurricanes a threat but even thunderstorms are certain to cause some outages during any year.

It seems like there should be some sort of financial assistance available since it is medically necessary. It'd likely save the medical insurance company money in the long run. Getting the generator installed is likely to be less than a single ER visit because heat triggered an MG crisis.

Anyone have tips or success with this?

Lee

Hello nearby fellow Floridian!

As for hurricanes, I’d say no, because you have the option to evacuate to designated special needs shelters.
For losing power during our daily thunderstorms (today’s was pretty intense here!), I think it would depend on your insurance company and your doctor’s support.
Last year during Hurricane Irma, we lost power for 7 long days. I contacted our insurance company to ask if a battery pack for my husbands CPAP machine would be covered and they quickly said no as it was not life sustaining, It was only for sleep apnea.

On an additional note, if you’re not already aware of it, we have a local MG support group that meets every other month here in downtown Orlando. Let me know if you’re interested.

Lisa

Thanks Lisa,

I also use a CPAP and noticed that it actually runs on 12V out of the power brick that plugs into the wall. I picked up a deep cycle battery at Walmart for back-up. It's not portable but will run for days.

I'd certainly be interested in the group. I'm in Cocoa but don't mind the drive (unless the sun is warming me up too much).

Lee,
I will let you know about the next meeting, not sure if the next one is September or October (the meetings are on hold during the summer).

Lisa

If insurance won't help with costs, what about just a window air conditioner and a small portable generator, just big enough to run the ac? Then you can at least keep one room safe for you.

I would be surprised if there was assistance. A full house generator in S Florida is between 10 to 13,000 depending on the size of the house. I would check into a portable one for emergencies if you can not get a full house one. That was one of my musts when we moved back and we were without power for 5 days during Irma.
Karen