Tribe Feed Forums 2023 Insight Summit Targeting Mitochondrial Impairment in PD

  • Melissa McConaghy

    Administrator
    11/04/2023 at 9:17 am

    Welcome to this presentation. Please post your questions or comments here and we will forward them on. Check back for your response!

  • Geoff Meadows

    Member
    11/04/2023 at 2:11 pm

    Gene therapy is dangerous at any level. Proof positive that the medical profession has no idea what they are doing!

    • Kishore Raj Kumar

      Member
      12/04/2023 at 4:52 pm

      Yes there is no proof that this works and should not be used outside of the clinical trial setting,

      Kind regards,
      Dr Kumar

  • Finlay Shanks

    Member
    11/04/2023 at 4:52 pm

    Please describe again the foot /toe distonía and the restate the associated related genetic fault(s). Is this only related to early onset cases??

    • Kishore Raj Kumar

      Member
      12/04/2023 at 4:53 pm

      Dear Finlay,

      Dystonia can occur with any type of Parkinson’s disease, but appears particularly common in early onset cases such as those caused by PRKN (parkin) mutations,

      Best wishes,

      Dr Kumar

  • Stephen Dunn

    Member
    11/04/2023 at 7:10 pm

    You indicated that foot Dystonia was often experienced with the PRKN & PINK1 mutation. Any form of targeted Mitochondrial treatment, or involvement in medical trials obviously requires knowing if you have the PRKN or PINK1 mutation. With a family history of Parkinsons through three successive generations all diagnosed at 61 (me, Father and his Mother), and foot dystonia exactly as per the patients in your video would you recommend genetic testing for myself and/or children? I’ve been considering it for a while as I understand it is quite expensive, but the recent emegence of dystonia is swaying me towards having it done..

    • This reply was modified 1 year, 1 month ago by  Stephen Dunn.
    • Kishore Raj Kumar

      Member
      12/04/2023 at 4:56 pm

      Dear Stephen,

      You could discuss genetic testing with your Doctors. The benefits of genetic testing are not entirely clear at the moment. If multiple generations of your family have Parkinson’s disease, this could be autosomal dominant, for example a LRRK2 mutation (G2019S), many people like to know what is wrong with them, in the future their may be treatments that target specific genetic causes, Kind regards, Dr Kumar

  • Rooney Upton

    Member
    12/04/2023 at 11:18 am

    Hi Dr Kishore Raj Kumar

    I found your presentation most informative , full of hope and inspiration, keep up the good work

    Thanks Rooney

    • Kishore Raj Kumar

      Member
      12/04/2023 at 4:51 pm

      Thank you Rooney,
      Best wishes,

      Dr Kumar

  • gauri khare

    Member
    12/04/2023 at 5:45 pm

    I am 53 today having a journey of 12 years of Parkinson. I learnt while attending this seminar that I have Dystonia. It makes my posture and walking awkward

    • Kishore Raj Kumar

      Member
      17/04/2023 at 10:07 pm

      Dear Gauri,

      Thank you for the comment, it would be worth mentioning this to your doctors in case specific treatment is required,

      Kind regards,
      Dr Kumar

  • Kalyani Desai

    Member
    12/04/2023 at 6:03 pm

    Dear Dr Kumar,

    In the last 12 months I have started to experience the exact same foot dystonia as the lady in the video (foot drop and inward turned foot) However,I have noticed that it seems to appear when I am at peak dose on levodopa/carbidpoa. When my dose wears off the dystonia is long longer an issue and I can walk normally. Have you seen this before? Any idea of the cause and how I can treat it?

    • Kishore Raj Kumar

      Member
      17/04/2023 at 10:10 pm

      Dear Kalyani,

      I wonder if this could be peak-dose dyskinesia, and whether it would respond to a reduction in your dose, I suggest discussing with your doctor, I think taking a video can be helpful,

      Best wishes,

      Dr Kumar

  • davina . hooper

    Member
    13/04/2023 at 10:44 pm

    excellent

  • Tammy Noden

    Member
    01/05/2023 at 10:36 pm

    Thanks for yr information.

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