Tribe Feed Forums 2023 Insight Summit Targeting Mitochondrial Impairment in PD

  • Melissa

    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

    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

      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

    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

      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

    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 month, 3 weeks ago by  Stephen Dunn.
    • Kishore Raj

      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

    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

      Member
      12/04/2023 at 4:51 pm

      Thank you Rooney,
      Best wishes,

      Dr Kumar

  • Gauri

    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

      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

    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

      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

    Member
    13/04/2023 at 10:44 pm

    excellent

  • Tammy

    Member
    01/05/2023 at 10:36 pm

    Thanks for yr information.

Tracker

Tracker

The tracker is designed to help you track the amount of time you spend in scheduled exercise each day. Scheduled exercise is activity you have prioritised in your day for health and to help slow your Parkinson’s down. This might include PD Warrior exercise, fast walking, golfing, going to the gym etc. It does not include incidental activity such as housework & gardening (although we hope this increases too). The aim of the tracker is to help you build an exercise habit and to keep you accountable, so try and enter something each day.
At the end of the 10 Week Challenge you can download and review your overall performance.

Tribe 365 Community Guidelines

Overview

The goal of the Tribe 365 community is to share relevant Parkinson’s Disease information and resources, and support fellow members through the highs and lows of their journey with Parkinson’s Disease.

In order to meet the goals of this community, it’s important for members to feel like they are in a safe place that is populated by people with shared interests. As such, we request that you read and adhere to the guidelines that follow.

Guidelines:

  • Respect the privacy and personal information of other members
  • Communicate with courtesy and respect
  • Treat others online as you would treat them in real life
  • Be tolerant towards other’s viewpoints; respectfully disagree when opinions do not align

Please do not:

  • Sell or promote any products or services without the administrator’s prior permission
  • Make personal attacks on other community members
  • Use defamatory remarks or make false statements against others
  • Post prejudiced comments or profanity
  • Bully or make inflammatory remarks to other community members

Consequences:
We will take action when we see someone violating these guidelines. We request that all community members report behaviour that violates our guidelines to a member of the PD Warrior Team.

Agreement:
By logging onto the community and activating your profile, you are considered to be in agreement with the terms and conditions listed above.