Recent content by 4tloml

  1. 4tloml

    CALS Roll Call Continued

    Seems like a pretty rough time across the board lately. Sharon, you're going through a big transition now for both of you, but the Hoyer use does get easier. I learned a lot from watching YouTube videos and then took it very slowly. Thankfully, we were both able to laugh at my clumsiness at...
  2. 4tloml

    Struggling

    Sue, you've been at this for such a long time--that you have your sanity is really impressive! The losses you describe are heartbreaking. ALS not only carves out pieces of our loved ones' lives, it carves out pieces of our lives, too. Grief for all of that loss is hard to process while it's...
  3. 4tloml

    Heart Rate/Blood Pressure Question

    Thank you everyone for your input. I do track vitals regularly and have it logged. Sounds like it's not anything urgent (thank you for sharing your own experience, ShiftKicker), so I'll bring the log to his next appointment. (And I'll get back-up manual numbers, Nikki--thanks for heads up on...
  4. 4tloml

    Heart Rate/Blood Pressure Question

    Has anyone experienced widely fluctuating heart rates and blood pressure even as O2 readings remain stable? Do you know what it may indicate (if anything)? My PALS's heart rate jumps around from the 50s to the 120s and seems inconsistent with fluctuating blood pressure. (Sometimes BP readings...
  5. 4tloml

    With sadness

    So very sorry for your loss and heartache, Sun. Hoping you can take solace in knowing he was surrounded by loved ones and comfortable, and that your devotion was well illustrated in the way you cared for him.
  6. 4tloml

    More changes as the end gets closer :(

    Heartbreaking to hear the pain you are in. The love you express is as palpable as the pain, though, and that's the best and most pure thing you can give your mom.
  7. 4tloml

    bed remote control

    My husband can longer use the bed control either, so he goes to bed with the head raised to prevent choking (he has reflux) and then foot portion raised to keep him from sliding down in the bed. I use a baby monitor when I'm not in the room and I sleep in a bed right next to him, so any sound at...
  8. 4tloml

    CALS Roll Call Continued

    Was nice to have some relative calm the last several weeks. Seems to be over for the moment. My mother (89 and with Parkinson's) fell and was taken to the hospital by ambulance. Our son was out with friends, and since he's my only backup CG, I didn't get to the hospital till all the tests were...
  9. 4tloml

    low oxygen levels

    Advice to those who come here with new diagnoses is often to be kind to themselves as they come to terms with what it means to them...that's still good advice when big changes come. I'm so sorry...bad news just sucks. Hope you're being gentle with yourself. Hugs are going out to you.
  10. 4tloml

    Overwhelmed

    Awesome situation your boss and HR are offering. You have earned it, I'm sure! Between that and new help from hospice, I hope you'll have a minute now and then for a deep breath, that glass of wine, and a lovely fire in the chiminea.
  11. 4tloml

    Struggling

    Hope you are able to relax and thoroughly enjoy all the wedding festivities, Sue! Maybe even enjoy the drive home--crank up some tunes and only stop when YOU need to. ;) Have fun!
  12. 4tloml

    Upset Rant

    AKNate, I've read your post and the responses a few times and didn't know what to say. I relate in a lot of ways. All I can offer is that therapy helps some and doesn't others--although like Mike, I went through several before finding one that worked effectively with me. What she offers, besides...
  13. 4tloml

    low oxygen levels

    My husband doesn't see a pulmonogist at clinic either. They have a good respiratory therapist and there is a pulmo who consults with the team. But my PALS only saw a pulmo right after diagnosis who told him he should lose weight to make his breathing easier. (His FVC was at 66% at that time.)...
  14. 4tloml

    What to expect!

    Kbob, it's always with mixed feelings we welcome our new friends. So sorry you need this community, but so glad you've found us. Early on, I found the "search" function very helpful, but also felt welcome to just ask...especially about all the terms that get tossed around. There's definitely a...
  15. 4tloml

    low oxygen levels

    sunandsea, I don't have any wisdom for you, but sending good thoughts your way. It's always hard when things (like O2) change and we struggle to figure out why. And starting hospice seems to be a mixed bag--thankful for the help but also sad the progression has created the need for it. Even...
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