Recent content by Ken15

  1. Ken15

    Nightline Segment on ALS

    Brainstorm-Nurown is certainly not without controversy, as evidenced by the discussion in this, and other, forums. To add another perspective, here's a view from the Israeli press. Another downside of the NightLine segments suggesting a cure may be at hand is that people will reduce or stop...
  2. Ken15

    Nightline Segment on ALS

    Thank-you, Kevin I was able to watch Part 1 on YouTube, but couldn't find Part 2 there. But I did find it here. Ken
  3. Ken15

    Orphazyme Clinical Trial Hits Full Enrollment

    My apologies. I incorrectly posted the Phase 2/3 link for NPC. Nikki posted the correct link to the Phase 2/3 SOD1 ALS result. Ken
  4. 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.
  5. Ken15

    In sickness and in health

    V, Completely empathize with your predicament. This type of situation is ever present in back of every CALS mind: who will take care of my PALS if I am out of commission myself? During our (now) 21 month battle with this disease, I myself became a patient at the Mayo Clinic, not once but...
  6. Ken15

    Attendant Controls for powerchair

    Our Permobil M3 (May, 2019 delivery) came with a platform/hand rest for the attendant, when using the joystick. Please see pic below; Ken
  7. 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.
  8. Ken15

    How are you?

    Agree, completely - more like a parallel universe. You look for slices (30 min to 2 hrs) of time to do things while your PALS can be un-attended. We had a pretty good separation of duties: I did all the yard work, lawn maintenance, vehicle(s) care, repair and maintenance, all grilling, food...
  9. Ken15

    Howdy Folks

    One more thing: as soon as you can, sign up for the Mayo's Patient Portal. All of your test results and doctors' notes will be posted there for you to review and/or download. Frequently, because they have their own labs, your blood test results will be posted within an hour or so after being...
  10. 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...
  11. Ken15

    Florida clinics

    My PALS has been going to the Mayo in Jax since Oct, 2017. She just completed her 4th MDC in June, has been enrolled in the C9 longitudinal research study (P01 NS084974-1) since Jan, 2018 and is currently participating in the Biogen antisense (ASO) clinical trial (5 lp infusions to-date) to...
  12. Ken15

    Sudden Bout of Incontinence

    Post urology visit update: After an extremely thorough interview and examination, including a stress test, leak test (cystometry), blood test and microscopic urinalysis, the Mayo doctor said she had bacteria in the bladder, but otherwise no other significant issues. He doubled her oxybutynin...
  13. Ken15

    Sudden Bout of Incontinence

    Brief update: her ALS doctor referred her to urology and she has a consultation with a uro doctor tomorrow. Ken
  14. Ken15

    Sudden Bout of Incontinence

    Kate, Thank-you. How is CO2 retention diagnosed? Are there other symptoms? Ken
  15. Ken15

    Sudden Bout of Incontinence

    Good point - they had to put her on an IV last week due to trouble finding a good vein. She was somewhat embarrassed for not hydrating better and has been focused on hydrating for this coming visit. Yes, Karen, it is more like urge incontinence - she is ok for awhile, but when she has to go...