Parkinson’s Disease and how my thinking has changed when medication doesn’t control symptoms

Поділитися
Вставка
  • Опубліковано 28 гру 2024

КОМЕНТАРІ • 38

  • @davinagauthier6396
    @davinagauthier6396 7 місяців тому +5

    You haven't lost your sense of humor..that's so encouraging...

  • @TheToscanaMan
    @TheToscanaMan 3 дні тому +1

    Esther, thank you for sharing your story and the words of encouragement.

  • @GaryPack-l4u
    @GaryPack-l4u 5 місяців тому +4

    Your sharing is really valuable. You are a voice for many.

  • @lisaa6099
    @lisaa6099 6 місяців тому +3

    Thanks. Bless , keep up the videos……. The fear of the future is what i have also so thanks for saying that

  • @JeremyMcdonald
    @JeremyMcdonald 11 місяців тому +3

    The worst choose your own adventure! Perfect!

  • @audiotech6513
    @audiotech6513 9 місяців тому +2

    Nice to see your video i am with you i hv been diagnosed since 4months now for hand tremor n feel the same i am guy 70 years but PD is different for different people i guess…. You are a long way for DBS so enjoy life in the meanwhile n keep up your videos

  • @alecspeer
    @alecspeer 9 місяців тому +2

    I am diagnosed with Parkinson's Disease in 2019. I am 76. There is currently no cure for PD.
    I am a patient of a neurologist who is a specialist in movement disorders, and he diagnosed me as having PD.

    • @shakinginmyboots1
      @shakinginmyboots1  9 місяців тому

      We definitely need a cure

    • @guncontrolisusingbothhands2331
      @guncontrolisusingbothhands2331 2 дні тому

      @@shakinginmyboots1 You should have your methylmalonic acid tested, which will show your tissue level of B12. A normal serum B12 test can show normal while it's low at the tissue level. It can cause tremors and other symptoms that are often misdiagnosed as Parkinson's. I'm just curious, are you a vegan?

    • @shakinginmyboots1
      @shakinginmyboots1  2 дні тому

      @ yes and I take B12 supplements, however my symptoms pre-date my veganism.

    • @guncontrolisusingbothhands2331
      @guncontrolisusingbothhands2331 2 дні тому

      @@shakinginmyboots1 Yeah, if you are taking B12, I guess that rules out a B12 deficiency. My Grandfather had Parkinson's back in the 1980's and a few decades later when the internet came about, I started going to google scholar and reading research articles about Parkinson's and stumbled onto an article from a small research company called Pipex Pharmaceuticals. After the genome was mapped, and the ATP7B copper binding gene was identified, free copper was discovered. So far over 400 defective ATP7B gene mutations have been found. These researchers tested people with Parkinson's, Alzheimer's, ALS and Schizophrenia and found they all had elevated free copper levels. They applied for a usage patent to treat and reverse these conditions with a copper lowering compound called ammonium tetrathiomolybdate, but the FDA never approved it to treat these conditions. They approved it to treat Wilson's disease though, which is also a free copper toxicity disease. Interestingly my Grandfather died from Parkinson's, my uncle died from ALS, and my brother had Schizophrenia, but I reversed it by lowering his free copper with 50 mg of zinc 3 times per day, one hour before meals and also had his doctor prescribe allopurinol, which is a uric acid lowering drug that is also a copper chelator. Since it's a genetic thing, I had my free copper tested and it was 3 times higher than normal, which I have since lowered to normal. Pipex researchers determined that people can have a high free copper and not have any problems as long as their blood brain barrier BBB is intact. As people get older, the BBB starts to deteriorate allowing the free copper to enter the brain which causes Parkinson's, Alzheimer's or ALS. In my brother's case, he must have been born with a defective BBB, because he became schizophrenic at age 21. Thanks to God, he's now back to normal after getting his free copper level back to normal. The free copper test code at lab corp is 279071. This is different than a normal serum copper test and will measure the amount of unbound or free copper contained in the serum copper. A normal free copper should be 0-10 mcg/dl. As for lowering the free copper with zinc and allopurinol, it's a good idea to have your free copper checked every 3 months, because it can cause a copper deficiency in some people in a couple of years. The now retired Dr George Brewer was taking people diagnosed with Parkinson's ALS and Alzheimer's, and successfully reversing their conditions by lowering their free copper. Apparently he was involved in some way with Pipex and their research. Anyway, I just thought I'd share this with you. Good thing I stumbled onto your videos last night, so that I can share this with you. I was on YT last night, and saw your pretty face and thought "Who is that beautiful woman, I'm gonna have to check out her channel". So do you live in the US? At first I thought you maybe had a Canadian accent, or maybe up north somewhere. I live in Oklahoma near the Texas border on a ranch with no cattle, just cats LOL.

  • @LifewithParkinsons
    @LifewithParkinsons 10 місяців тому +2

    Hi Esther, I did not realize you had a UA-cam channel. Mostly watched you on Tik Tok. Just watching you and Jeremy chatting. Will share your channel.

    • @shakinginmyboots1
      @shakinginmyboots1  10 місяців тому +1

      Hi! I just started as an easy way to post my TikTok’s on Twitter (X) originally. But realized TikTok time limits kind of suck when I want to really talk about stuff in detail. So here I am on UA-cam. This makes sense though as I see there are a lot of Parkies on here. Love your stuff!

    • @LifewithParkinsons
      @LifewithParkinsons 10 місяців тому +1

      @@shakinginmyboots1 I agree, I find Tik Tok very restraining and difficult to gain a solid footing with content more than 1 minute long. UA-cam has a great community and I feel strongly that there are not enough quality channels to fit the demand, so I am glad you are here.

  • @paulsteffan2703
    @paulsteffan2703 6 місяців тому +1

    Biggest problem- dosing to level. I take sinemet 75 mg every 2 hrs. Spend half the day up and half the day down. I’m 60 and I’m busy . This dosing regiment sucks. Hoping for DBS

  • @timball3026
    @timball3026 8 місяців тому

    Thank you for being real

  • @craigkeller
    @craigkeller 6 місяців тому

    Brave and real.

  • @jonathanstapleman2112
    @jonathanstapleman2112 7 місяців тому

    I have a DBS and I'm so glad I did. My Leva Dopa dose is cut back 50%

  • @nedaward3032
    @nedaward3032 8 місяців тому

    Have you thought about mri based ultrasound to treat the tremor?

    • @nedaward3032
      @nedaward3032 8 місяців тому

      Just heard your next sentence! lol. I guess you did.

  • @raymondviccaro7489
    @raymondviccaro7489 6 місяців тому

    Talk to your neurologist about focus ultrasound for your tremor.

  • @stevesilia9175
    @stevesilia9175 9 місяців тому

    You got dyskinesia after six months on the medication ?

    • @shakinginmyboots1
      @shakinginmyboots1  9 місяців тому +1

      Sooner actually, didn’t really know how it felt in the beginning. Thought it was something else, but yes I developed what’s know as “wearing off” dyskinesia almost immediately.

    • @stevesilia9175
      @stevesilia9175 9 місяців тому +2

      So I am a 53-year-old male was just told I have Parkinson’s i’ve got a slight tremor in my left hand they want to start me on the medication but I’m a bit hesitant

    • @shakinginmyboots1
      @shakinginmyboots1  9 місяців тому +1

      ua-cam.com/video/v-LzJb3DcIg/v-deo.htmlsi=HCOMzKyQs-5HNS1A

    • @shakinginmyboots1
      @shakinginmyboots1  9 місяців тому

      @@stevesilia9175 it’s different for everyone. I found this video helpful. I started the medication to reduce my tremor for work. It really depends on so many things. There’s no right or wrong answer

    • @stevesilia9175
      @stevesilia9175 9 місяців тому

      @@shakinginmyboots1 Thank you so much ; I’ll let you know how it goes .

  • @roberttomasetti3654
    @roberttomasetti3654 9 місяців тому +3

    Hi Ester, same here first years after PD diagnosed. I discovered that you have to take each dose of the carvidopa-levidopa at exact intervals. Tremors are under control. Please don't overdose, it has some nasty side effects. I am a member of the Michael J. Fox Foundations Network of Care, it's free. Check it out. Good advice from members in treatment.

    • @tootalljones77
      @tootalljones77 7 місяців тому

      B.S. life isnt "exact" If I'm going into an important meeting or a social gathering, there's definitely a difference from being home alone, or at the gym. Everyone s different
      I take it according to my daily activities.

  • @puttentanesame6687
    @puttentanesame6687 9 місяців тому

    Acupressure massages.

  • @judyhowell7075
    @judyhowell7075 5 місяців тому

    Foods!