Ken15's latest activity

  • Ken15
    Ken15 reacted to swalker's post in the thread 2019 Spring trip to Yellowstone with Like Like.
    I really appreciate the feedback I receive from folks on this forum. It is a joy to share my experiences here. I am really excited to...
  • Ken15
    Ken15 reacted to swalker's post in the thread 2019 Spring trip to Yellowstone with Like Like.
    Yellowstone's Hayden valley is an amazing place. Over the years I have seen abundant wildlife there. On this trip, we had driven...
  • Ken15
    Ken15 reacted to swalker's post in the thread 2019 Spring trip to Yellowstone with Like Like.
    We once again took a spring trip to Yellowstone this year. We went a week later than we typically do so that we would have a greater...
  • Ken15
    Ken15 replied to the thread Nightline Segment on ALS.
    Brainstorm-Nurown is certainly not without controversy, as evidenced by the discussion in this, and other, forums. To add another...
  • Ken15
    Ken15 replied to the thread 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
  • Ken15
    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
  • Ken15
    This Phase 3 enrollment notice was posted today. Earlier this year, results of the prior Phase 2/3 trial were published.
  • Ken15
    Ken15 replied to the thread 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...
  • Ken15
    Ken15 replied to the thread 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
    • Attendant-Joystick.jpg
  • Ken15
    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...
  • Ken15
    Ken15 replied to the thread 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...
  • Ken15
    Ken15 replied to the thread 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...
  • Ken15
    Ken15 reacted to lgelb's post in the thread My husband with Like Like.
    Welcome, kiwi. I'm sorry you find yourself here. What you describe is pretty common and if you read the Current Caregivers section, you...
  • Ken15
    It is important for PALS keep hydrated, for numerous reasons. However, as they lose strength and dexterity in their arms/hands, it can...
    • drinking-solutions.jpg
    • fleximug.PNG
  • Ken15
    Ken15 replied to the thread 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...
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