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  1. J

    Adaptive Van question - door height

    Inside should be fine (60in) it was just the door entry. Van isn’t local but we get five days to return it if we don’t like it. This is through MobilityWorks.
  2. J

    Adaptive Van question - door height

    We are looking at leasing an adaptive van. My height in the pwc is 56 - most vans so far have a door height around 52.5 so would require me ducking or leaning back. Vans with 56.5 door height are more expensive - so was curious if people experienced this and it wasn't much of a problem or it was...
  3. J

    B-12 (methylcobalamin) injection trial

    My understanding is that this attenuates high homocysteine levels which are neurotoxic. Wouldn’t they test for high hcy before going this route?
  4. J

    How do YOU keep your mind fresh once immobile?

    Fwiw: diagnosed Nov 21, was FRS 38 now 34 and continue to decline about a pt/month. The computer is my next best friend. Luckily, it’s a hobby and my career. With built in voice recognition windows 11 can definitely help. you can write, explore, automate the house, play games…. Keep the mind fresh
  5. J

    The gut and ALS

    As part of the Theracurmin trial through Duke they are collecting our microbiome: Stool Microbiome Sequencing change [ Time Frame: Enrollment, week 4 and month 6 visits ] The microbiome of study participants will be analyzed in stool samples at enrollment, week 4 and month 6 visits. Changes...
  6. J

    Update rescue ALS ( Clene)

    Although the cohort is small this seems promising- what is your read?
  7. E2D583D9-B043-4024-9D80-AC63A56266E1.jpeg

    E2D583D9-B043-4024-9D80-AC63A56266E1.jpeg

  8. J

    AMX0035 FDA Advisory Commission

    interesting read - march 30th fda review of amx35 https://www.fda.gov/media/157186/download
  9. J

    Early stages?

    John, I’m leading you by a few months and also have adult children in their twenties. I sympathize with your situation. After being tentatively diagnosed by my neurologist- I was then referred to a specialist at the Duke ALS clinic. They say it takes a specialist to make the final call. From the...
  10. J

    Do you stop dreaming

    I think this is an important post - to recognize our dreams, thoughts, desires and how they present a challenge. I hear friends talk about going skiing and running in races - I get jealous and then feel remorse. Friends ask me if I’m in pain - I tell them for me it is more of a mental challenge...
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