Book Board Chat

Sandy - thanks. I checked the Today show. I didn't watch the video but her case is much worse than mine. I can relate to
total muscle control loss and falling down or being seated and slumping over. These attacks seem to come in clusters and I haven't had one for many months now. I have slumped over a shopping cart in a store, fallen on the floor at a supermarket and pharmacy and slumped at restaurants where management has insisted that I use a wheelchair to leave. Others have been
with me in all cases.
I had an attack during an IEP meeting at a school and that lasted rather a long time because the school nurse kept asking me questions and I was using recovery energy to try to answer - basically I can't talk but can hear. I had such a long attack at my MD's office that they called my neurologist who told them what to do...... nothing, I'd recover on my own. And I had a long attack at a counselor's office several years ago. I had told her about cataplexy but after a while she checked with her supervisor and they called an ambulance. By the time I was in a wheelchair on my way to the ambulance I had recovered and started to educate the EMT's about cataplexy. One EMT had a laptop and looked it up and finally agreed that what I was saying agreed with info online.
I'm comfortable about all as I can't control it so it isn't "my fault". I've offered to sign off on staff development (observing and learning about catapley) for the medical people but they don't think that is funny.