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    • #13176
      Forum Moderator
      Keymaster

      Vitamin B12 supplements may help slow Parkinson’s disease progression in patients in the early stages of the disease, a study has found. Click here to learn more.

      Do you take any supplements? If so, which ones? How have they helped you?

    • #13195
      Jean Mellano
      Participant

      I have been taking B12 for over a year since I am a vegetarian.  Just had my blood tested and my b12 level was >2000 (range per lab s 232-1245).  I am not sure what role B12 has played in my PD symptoms.  I was diagnosed in 2015, i am still in early stages but I do many things to fight PD, especially exercise.

      • #13217
        Ally
        Keymaster

        Jean, how long have you been vegetarian? I was vegetarian in high school and again between 2012 – 2016. Unlike most people, I did not notice a real difference in my overall health/wellness without meat protein in my diet, but do you think (or have people tried to tell you?) that this contributed to you being diagnosed with PD? I know there is a link between gut health + risk of PD … just wondering if this factors too.

    • #13222
      Jean Mellano
      Participant

      I have been a vegetarian for about 10 years, reason is animal welfare.   Took out diary from diet as it is considered inflammatory and again animal welfare is a concern for me.  I eat eggs from happy chickens (lots of farms near me where chickens are truly free range and I have met them :-))  I dont think meat or lack of meat in the diet has anything to do with PD.

      • #13242
        Ally
        Keymaster

        I love that you get your eggs from ‘happy chickens’. 🙂 I think in general the more ‘real’ food we can eat (vs. processed crap that we can’t even pronounce) the better of we will be long-term, regardless of whether it’s meat or produce. Have you read Eating Animals by Jonathan Safran Foer?

    • #13243
      Jean Mellano
      Participant

      Havent heard of that book.  It is not a title that appeals to me LOL.  You are right, we have too much processed food in our diets, its cheap, quick and readily accessible.

    • #13298
      Russell Wilson
      Participant

      one really needs to be careful to not read headlines out of context — this was mentioned on ParkinsonsNewsToday BUT one needs to remember that the “subjects” — the people with PD who were studied were all low on B12 at the start. It’s not likely to be effective if you have normal/healthy levels of B12

      • #13299
        Jean Mellano
        Participant

        hi Russell

        thanks much for your perspective.  i was low on B12 and started to take b12 supplement.  Now, I am very high on my B12.  No discernible change in my energy or symptoms. I think many with PD are so desperate to find something ‘natural’ to ease their symptoms.  I count myself in that group.  I get much more excited over headlines like this one about b12 than I do over a new drug announcement.

    • #13313
      Russell Wilson
      Participant

      in New Zealand, where medications are at least partially funded by Government (under Pharmac) even if a medication has some preliminary evidence for it there might not yet be enough to warrant its prescription being subsidized — like I was mentioning for Vitamin D, and most importantly for opicapone, a relative to entacapone — both members of a class known as COMT inhibitors — they slow the breakdown of dopamine in the system, making the level of dopamine more stable — something to help with “off” times — it requires considerably more evidence before it gets included amongst the drugs overseen by Pharmac. A pity, in some ways, as in the latter case opicapone has been shown to be more effective than entacapone, and to have fewer associated negative events — entacapone can be hepatotoxic — damaging to the liver — hence it’s not used until much further down the track of PD symptom development. It was once thought off periods weren’t experienced in early PD, something we now know is incorrect — lots of things like that, a real problem for more traditional models of PD. I think there’s some evidence that the more stable the level of l-dopa in the body the lesser the chances of dyskinesias developing — hence the need for a safer form of COMT inhibitor.

      • #13314
        Russell Wilson
        Participant

        lost my train of thought there!  There’s no research sfaik about low B12 being a contributor in the prodromal stage of developing PD — like so many other things. I did have a period of low B12 a few years before being diagnosed with PD, but it was quickly corrected and GPs haven’t thought there’s any need to repeat the test/B12 injections, after a number of normal results — even when those doctors were advised of the connection. What can one say? The etiology of PD is just so darn complicated!

    • #13315
      Jean Mellano
      Participant

      You are so right Russell, the etiology of PD is  complicated.  We are all so different in how we manifest our symptoms, it is no wonder there is no one size fits all treatment.

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