Scary moment with ventilator

[halfin]

Thanks, everyone.

That was scary but things have been fine since. We are improving our alarm situation. The baby monitor is a good idea.

It's strange, becoming so weak and unable to move. When I am set up with my Dynavox with eyegaze, I feel pretty normal. I can talk, use the computer, read books, listen to music, watch tv. It's slow but I can do a lot that I did before. But when I don't have it, in bed or travelling, there's not much I can do. I'm totally dependant on others, not only to deal with my needs, but to guess what my needs are. That's a helpless feeling.

 

[Miss]

Hal, we had a floor stand for my husband's dynavox. It was very easy to move it into the bedroom at night. The nice thing about that was that it had an alarm on it. I would roll it between the den and bedroom. It took very little to readjust it. We also had a mount for tables. It was perfect for taking the dynavox out of the house.

 

[tmasters]

Hal,

Can you imagine how different it was for PALS in your condition just 40 years ago, before people had PC's or power chairs?

Everyone knows to use a seatbelt in the car, a helmet when riding a bike, eye protection when using power tools, etc. It's like we need a user manual when we get ALS. It's amazing how fragile life is, and what simple change of circumstances could be fatal.

So happy everything is okay now, and you've used the opportunity to make the changes to ensure nothing like this happens again.

Take care,
-Tom