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Turns out J has a touch of the "pneumones", but we caught it early and were able to treat at home with antibiotics. Since our home health nurse had to quit on us, I've had a couple stress-related breakdowns, but was able to bounce back. Now I'm trying to decide between freelance caregivers...

Mine does. I gather that industry standard is "they need to be rolled every two hours while sleeping", but he naturally wakes up once an hour on average and wants a position change. I think it has to do with not being able to involuntarily move in your sleep, you just ache/get claustrophobic...

I hear what everyone is saying about the bipap. God knows, it's nothing new, and I will talk further on the subject later, but right now it just cannot be a priority for me. I'm back to being to the sole caregiver and after 3 years of 24/7/365, I'm exhausted. I realize from my posts, I might...

*Heavy sigh* I agree. Unfortunately, we were referred to a doctor who waited far, far, far too long to prescribe the biPAP for us and by then, J hated it and refuses to use it. We've missed the early window by several years at this point. It is what it is, I guess. I believe that if I'd...

@JimInVA: Where is Poquson (sp?) I lived in Fairfax County from ages 7-19. Also, squirrel! My fave is Robbie, who used to do somersaults off one of the trees in the backyard when he was a kit. There's also Tatiana (his girlfriend), and one other that just barks at me every time I go...

Fair enough, I agree. Thanks for the correction, Laurie! It's a tricky subject and only the C/PALS know their best decision for their situation.

That's always the case with grief- be it when someone actually dies or learning that a loved one has a terminal disease. Keep telling yourself it's okay and go about your day like everything is fine, and eventually the truth will become normal. It won't ever actually be okay, but what else can...

Yeah, that's gnarly. I don't know much about bulbar, but from what I've heard, it's one of nastiest diagnoses. And yeah, ALS is different for everyone. I actually believe that ALS/MND is kind of a blanket term and that years from now, they'll discover bulbar is a totally different thing...

Hi everybody! I haven't posted too much but I've come to this website many times over the years whenever I wanted to see how other people have dealt with the same issues we've faced. I'm a CALS for a (as of Monday) 45 year-old man who was diagnosed right around this time of year 2011. This...

Done! Thanks, Tillie and all you other awesome CALS out there!