Forum Replies Created

  • bevin

    Member
    August 2, 2023 at 2:46 pm in reply to: Multi purpose chair

    This chair is brilliant!  Can you give us more information on where you ordered it from in India?  Thank you!

  • bevin

    Member
    January 5, 2023 at 2:57 pm in reply to: Relyvrio

    My partner (pALS) has been on AMX-0035/Relyvrio since July 2022 as he was in the expanded access program. He complains of the terrible taste but has no side effects, chases it with coffee in the AM and a bourbon and coke in the evening, lol. He is also on Riluzole, but I give him a tablet at 6pm and then another one at midnight, as taking the Riluzole any earlier makes him feel exhausted. His neurologist, Dr. Bedlack no longer recommends the Theracumin regimen that my partner has been on since 2020. Dr. Bedlack said the recently concluded studies did not show Theracumin to be effective for ALS. I still give it to my pALS though, as Theracumin has lots of other benefits!  My pALS did not want Radacava when it was an injection form. When we asked about the oral form at our last ALS clinic visit, Dr. Bedlack did not recommend it as he said it didn’t show to be very effective except at the very early onset of ALS (my pALS has had ALS for 4 years now.) My pALS fortunately has slow progressing type. He has lost most of his upper limb function (can move his arms to about waist level but has very little grasp function left), his gait has been affected by muscle weakness, but he can still walk small distances and climb stairs (albeit slowly). But honestly, with all the various supplements and drugs he has started and stopped over these past 4 years (he was in the CNM-AU8 trial as well), we haven’t seen any have any real effect in slowing down what was already slow progression from the beginning. (Yet I will keep spending hundreds of dollars every month on these myriad of supplements because I can’t give up hope!)

    Dr. Bedlack does recommend N-Acetyl L carnitine (1 g 3x a day) and L-Serine (30g a day). Both come in powder format that you can mix in with ice tea or OJ and it adds a slightly sweet tart taste, but my pALS doesn’t even notice I’ve added it in, lol.

    • bevin

      Member
      January 5, 2023 at 3:00 pm in reply to: Relyvrio

      Rebecca D., My pALS had the same problem with TUDCA, major blowouts (literally), so he was not excited to try the AMX-0035/Relyvrio. No side effects at all with Relyvrio, wonder what is different and why.