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  1. 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...
  2. 4tloml

    Question on Sudden Shortness of Breath

    Looking for advice-- Just yesterday, PALS's shortness of breath increased dramatically. Now needs a breath for almost each word he tries to speak. - His O2 is still in 90s. - He is on Plavix (blood thinner). - His FVC was 60% 4 weeks ago. - Five days ago the RT was here and said his lungs...
  3. 4tloml

    EZ Lift or other portable wheelchairs

    There's an old (closed) thread that mentions the EZ Lift electric wheelchair and another, the Zipper, but I'm wondering if anyone has used a portable power wheelchair and what their experience has been. The EZ Lift with the joy stick now has a deluxe model with a 5-position adjustable back and...
  4. 4tloml

    On Grief

    Just read this by author Mirabai Starr: "Elisabeth Kübler-Ross, pioneer of the conscious dying movement, lived to regret having described the common features of the grief journey as stages. She came to see that everyone grieves differently and that science collapses in the face of the mysteries...
  5. 4tloml

    Low Nighttime O2 Sats

    We've been checking my husband's O2 during the day but hadn't at night. He has complex sleep apnea and REM Behavior Disorder (RBD) and has been on melatonin and a "Respironics BiPAP autoSV Advanced" for around 2 years at night. He's been on the Trilogy on and off throughout the day since...
  6. 4tloml

    How hard to push for a scooter or power chair?

    Steve has been sharing some of his great adventures since he's gotten his chair and they've gotten me thinking--but I don't want to hijack his thread. So, I'll ask here. PALS & CALS, what is your opinion about how much I should encourage my PALS to get a scooter or wheelchair for traveling? I...
  7. 4tloml

    Is cough syrup w/codeine safe?

    We all got flu shots, but my PALS has the flu. Came on suddenly last night with coughing and fever. He always uses the auto-servo bipap at night, Trilogy on and off throughout the day as needed and cough assist morning and evening. He takes Mucinex 12 hr morning and night and does breath...
  8. 4tloml

    What is reasonable?

    How long has it generally taken to hear from anyone after equipment has been ordered by the doctor? What about tests to be scheduled and follow ups to be calendared? How long did it take from a definite ALS diagnosis to your first clinic visit? Just wondering what is reasonable and what others...
  9. 4tloml

    Anyone using Proloquo4Text?

    I did a search here for PALS's assistive voice technology and found lots of helpful info. Now looking at Proloquo4Text and wondering if anyone has any experience with that app they'd be willing to share. It's way too late for voice banking, so the fact it lacks that capability is not an issue...
  10. 4tloml

    Honoring All Veterans...

    Today is USA's Veterans' Day, and it seems there are a number of you on this forum. So I just wanted to take a moment to say "Thank You." Some of you are here precisely because of your service--the wounds took a long time showing. Please know you're not forgotten. I hope the VA will continue to...
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