Recent content by wendybridges

  1. W

    CALS Roll Call Continued

    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...
  2. W

    CALS Roll Call Continued

    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...
  3. W

    Hello from Colorado!

    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...
  4. W

    Hello from Colorado!

    *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...
  5. W

    Hello from Colorado!

    @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...
  6. W

    Steps to take to end my life sooner

    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.
  7. W

    Reality check

    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...
  8. W

    0 to 60 in 4 months?

    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...
  9. W

    Hello from Colorado!

    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...
  10. W

    On Depression: And also, sorry, I'm new

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

    Steps to take to end my life sooner

    I'm a CALS and I think about this (almost) every day. It INFURIATES me that, not only is assisted suicide unavailable in 48 of 50 states, it isn't even spoken about. I think that when my PALS goes, I might get active in the cause. I know that if it were me, I would want to go drugged to the...
  12. W

    On Depression: And also, sorry, I'm new

    Philosophically, it's Plato's twin horses, right? Or was it Aristotle? That old Greek parable anyway, where we all have a black horse and a white horse in our heads, Good and Evil, Gluttony and Abstinence, Negativity and Posi- wait, was that the chick from Coupling and that other chick from...
  13. W

    On Depression: And also, sorry, I'm new

    To the website, not the disease, but I understand it's in somewhat bad taste to post new stuff (especially long stuff, and this is long). However, I thought this might help some people. Some background: my PALS was diagnosed August 2011. At the time I was 5 years free from anti-depressants...
  14. W

    Feeding Tube

    Oh my god, I remember when we first got the PEG tube. Initially, J hated it, but once we agreed that trying to eat was just too difficult and ultimately dangerous, he switched to feeding with a gravity bag full-time almost immediately. That was roughly two-three years ago. We actually just...
  15. W

    Life expectancy

    Jason was diagnosed August of 2011 and still going strong! He doesn't even use any breathing assistance (yet). We're hoping he has that rare Stephen Hawking version of the disease, where he's just going to live forever. Even if that's not the case, I've decided to live life as if that's the...
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