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  1. MVFinVA
    06-27-2018 09:52 PM - permalink
    Thank you for listening! It is so wonderful to communicate with someone who knows both parts of the ALS/FTD equation. I have several CALS friends who get the ALS part fully, but not the FTD.

    I am thinking from what you said that maybe the lack of interest in his iPad is CO2. He slept 15 hours last night and took an hour nap. He really likes the bipap, probably because he feels better with it on. I am going to make sure we find out his CO2 level on the 11th, and if things get worse before then I'll call them. We go to the sleep lab on the 2nd for them to read the data chip in the bipap and adjust settings. That may be enlightening also. I'll ask if they can do a blood gases test.

    Thanks for the insight.

  2. MVFinVA
    06-27-2018 04:37 PM - permalink
    Thanks for the replies! I didn't know about the private message feature, so I will try to push it over to that. I had more in my original message, over twice as much, and I had to chop a bunch out to post it:)

    I don't know exactly how to articulate the "speeding up" exactly. I know his FTD has progressed quite a bit, less language and less emotion, less connection. But he isn't distressed which is huge. His breathing is shallow and rapid but his O2 was fine last time it was tested. We go to the ALS Clinic on July 11th so we should know more about his breathing then.

    Thanks for listening! Sometimes it is hard to tell objective observations from emotional ones. I am usually pretty perceptive about people and things and draw valid conclusions without necessarily knowing why - kind of intuitive. But this whole process is so wrapped in emotions it's hard to know what is valid.

  3. MVFinVA
    06-27-2018 11:04 AM - permalink
    More info that wouldn't fit. His ALS started from the head down, ie neck, shoulders, upper arms. He can still use his hands somewhat. His breathing was at 50% in April, dropping form 80% in January.
  4. MVFinVA
    06-27-2018 11:02 AM - permalink

    Would you would be willing to talk to me about the progression ALS/FTD and give me insight

    My PALS has ALS/FTD(language variant), diagnosed in May 17. Today he sleeps 12 -15 hrs a night, sits in bed raised up so his head is supported and does jigsaw puzzles on his iPad, doesn't converse and can't follow conversations. He has a PEG & bipap at night, in April his breathing was 50%. He can still walk. He is not in any mental distress. He has started putting his iPad aside and just sitting there during the day.

    I think the dementia took a downward turn when he had the feeding tube placed at the beginning of May.

    My gut feeling is that things are speeding up, but what do I know, and is that just because I can't deal with thinking he has years of this?

    Any insight you have to give would be so appreciated. I don't know anyone who really "gets" the combination of these two horrendous diseases.

  5. MariaMary
    04-26-2018 08:23 PM - permalink
    Hi. New member...can you tell me how to post? I have tried searching the entire FAQs and can't figure it out. Sorry to bother.
  6. Aussiemndcarer
    04-10-2018 10:22 AM - permalink
    Hello. I would just like to send you a huge thank you for all your posts that help others. You are truly amazing Tillie.
  7. Wishful
    01-27-2018 08:55 PM - permalink
    Thank you for your reply in my thread, I appreciate you taking the time to do so.
  8. mpnatx
    12-28-2017 01:59 PM - permalink
    Thanks you so much Tillie! Birthdays never meant much to me. But now, birthdays are a major milestone!
    Love you!
  9. blue sky
    11-16-2017 10:28 AM - permalink
    blue sky
    Hello Tillie,
    I am sorry for your loss.

    I had a question regarding your experiences at night and the challenges. I found it difficult and I was wondering if a new communication device for night or sleeping time will help?
  10. CJnCherie
    09-27-2017 02:25 PM - permalink
    Hi. I'm a CALS. Never posted. My Significant other is Bulbar onset and is scheduled for a PEG tube procedure next week. I think I remember you posting that if it had been your call, you would not have had it done. She hydrates through a PICC line right now and wants to lose the PICC line. May I ask why you made that comment? I am concerned...

    Thank you, CJ.

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