Recent content by MP's CALS

  1. M

    Things I Love

    I love that after a busy, busy week with no time to come back here and check, I find SO MUCH LOVE! I LOVE that! I love that yesterday was my last day at work. I love the sound of my mom's voice when she says, all high-pitched and girly, "Only three more days!" I love the gorgeous...
  2. M

    Things I Love

    Reading the Things I Hate thread in the Past Caregivers' section, I was struck by cubcake's "I love that I got to walk in the sunshine with him today, and I closed my eyes and pretended for just a moment that we were 'normal.'" It was right at the bottom of the post and it just about knocked me...
  3. M

    Chicken Soup

    Agreed. This is an absolutely wonderful idea. People who care about you and your family want very much to help out, but they are afraid of "stepping on your toes" by choosing to do something themselves. With your guidance (I love the idea of picking up something specific the next time you're at...
  4. M

    Respiratory onset

    Yes, thanks for the link, Sadie. Very helpful.
  5. M

    Respiratory onset

    Good to know, Sharlene. I am just learning about this stuff, but if they have BiPAP at the same time as the oxygen, I would think that the BiPAP machine is "breathing for them" in a way that would prevent CO2 poisoning. She was having those types of symptoms BEFORE they put her on BiPAP and not...
  6. M

    OK, I'm letting it all out.

    Dear Dean's Wife, Of course you are overwhelmed! I have no idea how any CALS on the planet wouldn't be. I have been exceptionally overwhelmed lately and I haven't even moved to my mom's house yet! Just overwhelmed with tying up all the loose ends and getting all the health care needs taken care...
  7. M

    Respiratory onset

    Sharlene, I don't know if my mom is "respiratory onset" or not--they told us bulbar. BUT, she has had the most difficulty with respiratory issues, right from the start. She cannot breathe lying flat on her back at all. She is on BiPAP at night (with supplemental oxygen). Still walking with...
  8. M

    Working while caregiving

    K, I'm very sorry that FML doesn't extend to brothers! That's really stinky. That being said, everybody's situation is so different, but I will share what our family has done and hope that it's helpful. I am lucky in that my Mom (my PALS) is able to afford to help me defray the costs of...
  9. M

    Riluzole

    I don't know if changing the "timing" of the dose would help, Sharlene, but my mom was instructed to take her Riluzole at least one hour AFTER eating a meal or two hours BEFORE eating a meal. She has adhered to this schedule rigorously. She has had no side effects. Hope this helps. Good luck to...
  10. M

    ALSUntangled report #15 -- Coconut Oil

    Very good, tr. Thank you. I have been waiting for this report. We started Mom on coconut oil (just adding it to things that you might normally use butter or vegetable oil) and then her cholesterol (which has never been a problem) went up so high that her primary care physician wanted to put her...
  11. M

    Going to my 1st Support Group Tomorrow

    Of course you are "into this"! You love your husband and you want the very best for him and you want to be the best CALS you can be for him! I agree with st123, try not to let it bother you. I hope things smooth out soon.
  12. M

    Going to my 1st Support Group Tomorrow

    I'm so sorry you're going through this with your husband. It is quite overwhelming at first, I know! Go ahead and try the support group. Mom was feeling the same way before and after her first support group. She said it was scary seeing all the people whose ALS is more advanced than hers. On...
  13. M

    Diaphragm Pacing System

    Just a follow up note. We took Mom to the Mayo Clinic in Rochester, MN last week for a second opinion. Her diagnosis was confirmed after three days of non-stop testing and consultations with four doctors. We also found out at this visit that she has no function in the phrenic nerve on either...
  14. M

    Diaphragm Pacing System

    Thanks to all for the links. I don't know why a search didn't bring them up; I tried several search parameters. I didn't find the links until after I posted. Thanks especially to trfogey who helped with finding someone who's had one implanted. There was also a couple of other patients within...
  15. M

    Diaphragm Pacing System

    Hello all, I am new to this forum. My mother was diagnosed with ALS in February 2012 (but has had symptoms since July 2010). She is 72. She cannot breathe on her back at all, uses BiPAP at night, walks with a walker, uses a chairlift for the stairs (PWC on order), and her speech is becoming...
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