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  1. K

    Dizzying number of therapies

    Much as I enjoy reading ALS News Today with its almost daily announcement of new trials, drugs, etc., (Ultomiris, AstroRX, Reldesemtiv, AMX0035, Ibudilast, to name just a few), which thrills me at first glance, I think I end up more discouraged and angry than excited. I know this is a purely...
  2. K

    Morphine at the end of life

    This is a very pertinent and “right on” comment, as is the norm with you. However, I do need to comment on the issue of access to morphine, at least in Florida, in the event that a PALS does not wish to continue life prior to the determination that death is imminent. Present Florida law...
  3. K

    TDP-43 Protein

    Put his this under the “have ALS researchers been barking up the wrong tree” category. An article in ALS News Today from 10/1/19 points to recent research showing that clumping of the TDP-43 protein, long thought to be one of the potential causes of ALS, now appears to protect nerve cells. I...
  4. K

    Nightline Segment on ALS

    Hi all. I’m never sure where to post general comments like this, and I hope I’m not violating any forum rules. Yesterday Nightline ran a segment looking at the five year anniversary of the Ice Bucket Challenge and highlighting three PALS-Thurman Maynard, Sarah Olson, and Pete Frates. Worth a...
  5. K

    Biphasic Cuirass Ventilation (NIV)

    Hi all. I just saw a YouTube video of a PALS using a Biphasic Cuirass Ventilation device (BCV) that fits around the chest. No mask like with a Bipap. Has anyone seen these or looked into them? I think the product is a United Hayek RTX ventilator, and apparently it is being used by ALS patients...
  6. K

    Another newly diagnosed

    Unfortunately, though not unexpectedly, Dr. Pulley at Jacksonville Shands today confirmed my ALS diagnosis. I have known for some time this was coming, but as everyone knows, the actual confirmation is nothing less than shocking. My poor wife and daughter had held out hope, and as much as I had...
  7. K

    Club membership at hand

    Well, damn. My local neurologist, after two months of elimination tests, has now indicated likely NMD, with ALS being the most likely candidate. He basically kicked the can down the road and referred me to Dr. Pulley at Jacksonville Shands. We see him in late April for a second EMG and opinion...
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