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  1. Ken15

    Orphazyme Clinical Trial Hits Full Enrollment

    This Phase 3 enrollment notice was posted today. Earlier this year, results of the prior Phase 2/3 trial were published.
  2. Ken15

    FDA Names APB-102, Potential Gene Therapy for Familial ALS, an Orphan Drug

    Published today in ALS News Today The U.S. Food and Drug Administration (FDA) has granted orphan drug status to Apic Bio‘s APB-102, an investigational gene therapy aiming to treat familial amyotrophic lateral sclerosis (ALS) associated with mutations in the superoxide dismutase 1 (SOD1) gene.
  3. Ken15

    Drinking Solution Evolution

    It is important for PALS keep hydrated, for numerous reasons. However, as they lose strength and dexterity in their arms/hands, it can become quite the challenge to self-hydrate. This is just a quick post to let others know where we've been and where we are now (pre-feeding tube). We started...
  4. Ken15

    Sudden Bout of Incontinence

    I would appreciate any advice or input, re: the following. All of a sudden, today, my PALS had 2 incidents of urinary incontinence where I was unable to get her to the bathroom before she let go. As background, she is on riluzole, amytriptyline for sleeping through the night (since December)...
  5. Ken15

    Voice Banking: Model Talker vs Acapela

    Did a search and found this post from last year, but it's mostly about Model Talker. Has anyone used Acapela and/or is one significantly better than the other. The one thing I did notice is Model Talker requires fewer phrase in the PALS native voice - doesn't seem critically significant...
  6. Ken15

    20 Months into "It"

    Twenty-months into “It”. “It” being a metaphor for the ALS experience. Twenty months seems like a fairly long time, but for this CALS it has gone by relatively quickly. I think the pace of change has something to do with it. The shock of the initial diagnosis, traveling for 2nd (and 3rd)...
  7. Ken15


    Just posted on ALSA website . . . fyi. Ken
  8. Ken15

    Seamlessly Donating to ALS Organizations

    Not sure how well known this is, but if you shop here, a minor change to your Amazon bookmark can get them to donate to the ALS Association. Just insert "smile dot" before amazon dot com. If all on this forum did this, bet we could get this amount quite a bit higher :unsure:. Ken
  9. Ken15

    Medicare & Multidisciplinary Clinic

    My PALS has had her first 2 MDC's @ Mayo Clinic (FL) and Medicare has approved all associated claims except for her neurologist's charges. Naturally, these are the most expensive charges ($305). The procedure codes submitted by the Mayo are 99215 and 99354, with a diagnosis code of Z82.0. In...