Wednesday, January 1, 2014

New Year, renewed hope


I'm greeting this new year with renewed hope that I am really onto something here with the LMTM Phase 3 trial. At my last session, I did not sense any decline in my cognitive tests (still difficulty with remembering lists and any math past 20 is still gone for me, but nothing is worse). The psychologist stated he saw improvement in 'persistent cognition' and the nurse said she has seen really positive results in many of the participants in the trial.

So it's not just my hopeful Irish imagination!

12 comments:

  1. Just learned that TauRx is expanding the LMTX study to 35 more research centers in the US. YES!!!!

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  2. Hi Megan

    Very glad you're still doing so well in the TauRx Phase 3 trial....Thumbs up for you!

    I've heard of another two cases that are also doing very well. There's really light at the end of the Alzheimer's tunnel! :)

    Regards. JK

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    1. Thanks so much JK. Yes -- I heard also that TauRx is expanding the Phase 3 trial into 35 more research centers in the US. Very hopeful news!

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  3. Hi , my dad has just started this trial, don't know if he will be on a placebo or the medication, but your blog is so encouraging. I wish you the greatest success with this and you have backed up great hope for us. Thank you
    Marie

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    1. All the best to your Dad! He should be able to (according to the clinical trial agreement I signed) get on the 'real' thing after his trial phase is over, which I certainly intend to do. Good news -- latest tests from my neurologist show no decline, in fact a very slight improvement!!! on one of the tests. He was once in the amyloid camp, but now is quite positive about the tau protein approach that this trial addresses.

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    2. My wife is currently enrolled in one of the many LMTM trials.
      She just completed her first appointment after beginning to
      take "the big blue pill". The staff at our test facility is a bit
      vague about answering our questions.
      Hoping you may enlighten us with your recollections.
      How long after you started taking LMTM did you notice a
      positive change in cognition?
      Your last report seems to indicate that you are at least holding
      steady. When are you planning an update?
      We were amazed at the number of LMTM trials that are going on
      simultaneously. The consent forms that we agreed to to start the
      trial did not indicate that full strength LMTM would be offered to
      participants at the end of the 18 month trial. However, we have been
      advised that the governing rules have been modified to include that.
      If they didn't I doubt that participants who continued to decline and
      became confident that they were receiving placebos would withdraw
      from the trial.

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    3. Dennis -- after about 3 weeks, I felt somewhat overwhelmed, and the only description I can give it is that everything was more vivid and initially therefore more confusing. That settled down (or I got used to it),

      Just to be clear, there has been no improvement in the areas of my deficits (math, multi-tasking, short term memory) -- BUT things have not gotten worse, so I believe I am on the real thing and that it is working at stopping the progression.

      All the best to you and your wife!

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    4. Hello Megan, I looked thru your blog and it's already been about 1 year since you have been on the TauRx Phase 3 LMTM trial. To have held steady and not declined during the last 12 months - that's fantastic! There is real hope in this drug, and real hope for the rest of us!

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  4. Thumbs up for you Megan! I am always ever SO pleased to hear about your progress and how you are keeping yourself well! :)

    And Marie, all the best to your Dad in the TauRx trial. I know this will be a real positive step for him; I've heard encouraging anecdotes from the Phase 2 trial too. This drug is holding a lot of hope for many of us and loved ones.

    Best Regards. JK

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  5. Megan this news is brilliant. So pleased to hear that things are slowly moving in a positive direction. All the best to you.

    Regards

    M.

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  7. Hi. I've been following your blog for at least a year now. My husband has Alzheimer's and was also in the trial and now has the drug. I was wondering how you are doing. My husband is declining slowly, and it is hard to determine if the trial drug is keeping him from declining more rapidly or if the drug is not working. Have you heard any more results about how TauRX is doing with the trial. Thank you for sharing your experience.

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