Parkinson’s News Forums Forums Parkinson’s Treatment “DE-CLUMPING’ treatment

  • “DE-CLUMPING’ treatment

    Posted by Russell Wilson on January 16, 2025 at 4:53 pm

    a couple of years ago I attended a talk by a biochemist where he spoke about experimental treatment of Nortriptyline to “de-clump” alphasynclein — does anyone know how that’s going? I’ve been taking it since, but don’t know if it’s been helping — BUT I’ve had PD for about 10 years now, tremor-dominant, unilateral still, slow progression of tremor, new symptoms of increasing poor coordination, poor balance, some difficulty swallowing, increased/sloppy salivation, some evidence of memory impairment — but now getting on to nearly 70yo (next birthday), but don’t look it people say. still careful with diet, some milk, cut out most carb excesses — no potatoes, fried food cut out — insulin dependent diabetes predates PD but well controlled.

    Russell Wilson replied 2 days, 2 hours ago 5 Members · 5 Replies
  • 5 Replies
  • Christine P.

    Member
    January 31, 2025 at 2:58 pm

    Hi Russell,

    It looks like you have controlled your PD through your diet. That is great. With your diet, did you do it yourself or you hired a nutritionist layout a plan for you? The name of the medication, I have never heard of it. If you have any updates on this subject, please let me know. thanks.

    Christine P.

  • marknicholson

    Member
    February 6, 2025 at 9:39 am

    You have the same symptoms as I have, tremor dominant, so far more or less unilateral, and little else. I am 75 and have had symptoms for seven years. I reckon slow progress is due to being super fit but who knows? You start off mentioning Nortryptiline, then go on to your diet….to what do you ascribe your slow progress? The answer is you can’t possibly tell. You may just have the ‘least bad’ Parkinson’s like me and for that we should be grateful. (I live on potatoes and do not take milk!)

  • ghmac

    Member
    February 6, 2025 at 2:20 pm

    Where do you live to get Nortriptyline?

  • ecoevofan

    Member
    February 6, 2025 at 9:13 pm

    On a couple of papers and websites are very exciting. Take a look at:

    Neurobiol Dis. 2017 October ; 106: 191–204. doi:10.1016/j.nbd.2017.07.007.

    Neurobiol Dis. Author manuscript; available in PMC 2018 October 01.

    Nortriptyline inhibits aggregation and neurotoxicity of alphasynuclein by enhancing reconfiguration of the monomeric form

    and

    https://cureparkinsons.org.uk/2021/12/tackling-toxic-alpha-synuclein/

  • Russell Wilson

    Member
    February 13, 2025 at 8:58 pm

    thanks folks,

    I’m in New Zealand — nortriptyline available on doctor’s prescription

    dietary guidelines — just what I’ve read on the usual websites, also reducing milk consumption, but not giving it up yet — don’t think there’s that much data out yet

    mike-p — thanks, not that frequent a reader of clinical trials, but it’s got “potential”, some interesting stuff to follow up but not directly on “de-clumping” but the references provided by Ecoevofan are particularly interesting

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