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  1. C

    Bulbar & tracheostomy (Endotracheostomy)...

    Affected, Thanx again for you input. Diane H, Thanx also for your detailed response. I had misspoke regarding the accumulated mucus etc above the balloon. I'm having to re-read you post a time or two more to be certain I fully understand. Currently... I've been speechless for a few months...
  2. C

    Bulbar & tracheostomy (Endotracheostomy)...

    I'm planning an operation or insertion in January. I understand the basic dynamics of both. However, is there anybody on the forum that has experience with a heavy mucus flow during the use of said device(s). My concern is that the 'baloon' is far enough down the trachea that mucus can...
  3. C

    Bulbar & Trilogy Mask.

    60oz of nutrition and about 30oz H2o daily. Maybe another 10/15oz H2o might help? We'll give it a try.
  4. C

    type to speech options

    I use Predictable as well, a year old version and it is great. However, as I understand, most apple devices, I have an iPad Air, will speak given the proper settings. You may have to download a specific voice from the cloud, or so the instruction seem to indicate. I haven't used it, so I...
  5. C

    Bulbar & Trilogy Mask.

    Laurie, I have a tubular styled neck/chin brace to keep my mouth closed, but that doesn't do anything to keep my lips closed tightly. All the other items, save room humidification, are complied with (regularly). I was jesting about the Duct tape, but the Nexcare product just may have to do the...
  6. C

    Bulbar & Trilogy Mask.

    I now use the Trilogy unit all night and the better part of the day, most days. My problem... the extended use of the unit, drys my throat to a near desert like condition. Because I can't form a seal with my lips, the moving air escapes through my mouth. After a handful of hours (4 or 5)...
  7. C

    My Life With MND - Short Documentary

    Nice production. I dare say you will be successful. Keep up the good work... on both fronts.
  8. C

    Excess saliva

    Prior to meds, I was going through a roll of paper towels every two days. And that was the select-a-size product!!!
  9. C

    How Did the Progression Occur

    Wife noticed occasional pronunciation problems 01/15 I recognized slurring 03/15 Started evaluation (assorted tests) after returning from a consulting contract 07/15 Experiencing worsening slur and slight muscle twitching 09/15 Confirmed Bulbar Onset ALS (second opinion) 10/15 Excessive siliva...
  10. C

    Extreme dry mouth?

    I'm Bulbar, not quite a year since dx. The first few months, during the night, I would get extremely dry. Bioteen was the answer. As things progressed, for the worse, dryness became a non-issue. Excessive Silvia and eventually mucus flow became the bane of my existence. Meds, patches and...
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