Walking with Limb Girdle Muscular Dystrophy 2A

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  • Опубликовано: 5 янв 2025

Комментарии • 17

  • @julianavarro3769
    @julianavarro3769 6 лет назад +1

    My boyfriend has Beckers Muscular Dystrophy and your videos are so encouraging. We are trying to get him to be able to stay walking for as long as possible. He's currently 32.

    • @JohnGraybill
      @JohnGraybill  6 лет назад +1

      Thank you for sharing how my videos are encouraging. I don't know much about Beckers in terms of the course but I feel stretching and taking care of yourself are important...eating healthy being a big one too. Best of luck to you both and thank you again for watching.

  • @susanmeadows9146
    @susanmeadows9146 6 лет назад

    So true,
    DON'T stop doing ANYthing you can do, or... it's gone!

  • @eliezer344
    @eliezer344 6 лет назад

    Hi John hope you are doing fine and your family as well thank you for those videos , you're doing a great job.I have removed my facebook account.My 2 boys are doing ok , hoprefully they'll go through and be as strong as you are.

    • @JohnGraybill
      @JohnGraybill  6 лет назад +2

      You're welcome. Thank you for watching the videos. Having a strong mindset helps along with stretching and eating healthy. This can be tough for young people but I feel it has made all the difference in me. I'd look into Curcumin supplements. The brand I take is from CuraMed and its called Curcumin. I take the highest dose at 750mg a day. This supplement helps with inflammation and reducing it. Highly recommend it.

    • @eliezer344
      @eliezer344 6 лет назад

      John Graybill II thanks for this great information, I'll search for it on the net! And thank you for your feedback! Take care

  • @meganmose
    @meganmose 4 года назад

    Do you feel stiff when you walk?

    • @JohnGraybill
      @JohnGraybill  4 года назад

      I am stiff when I walk because my muscles aren’t strong enough to bend and hold me. Maybe it’s a safety measure I do unconsciously to keep myself from falling.

  • @LoveNaniiMarie
    @LoveNaniiMarie 4 года назад

    I am a carrier for type 2a limb girdle muscular dystrophy and I would like to know when exactly did you start getting symptoms? I’m currently pregnant and your videos help me understand the possibility of my son having this “ disease “. Lastly, do you know if both of your parents was a carrier or was it just one parent ?

    • @JohnGraybill
      @JohnGraybill  4 года назад

      Anastasia Escabi I was diagnosed when I was 17, 1995. There was no test for my parents but the idea is that both my parents were carriers to lgmd. I had a 25% chance to get the disease. I have 3 sisters and none of them have lgmd. Saying this, your husband or father of the baby has to be a carrier in order for your child to have lgmd. If he is not a carrier, your child will NOT have lgmd. LGMD2A is a recessive disease so even though you have it your child can only get lgmd if the father has it. Have you registered with the group “Coalition to cure calpain 3”?

    • @LoveNaniiMarie
      @LoveNaniiMarie 4 года назад

      So yes the thing is I’m going through court issues with the baby father so I wouldn’t know if he is a carrier. I don’t want to do the Amniocentesis test bc their a risk for a miscarriage or infection and I can not see myself going through that. What is when you said coplain ? Can u explain more about that.

    • @JohnGraybill
      @JohnGraybill  4 года назад

      Anastasia Escabi calpain is the protein were lacking. Goggle them and register with them.

    • @sahiljindal7274
      @sahiljindal7274 4 года назад +1

      sorry for that
      i am from india
      and ya i have to lgmd2a due to mutation in calpain 3
      i have 3 sister but my one sister also suffering from lgmd2a
      i hope the day will come soon
      when we are good
      hope so...

    • @JohnGraybill
      @JohnGraybill  4 года назад

      Sahil jindal have you registered with the nonprofit group “coalition to cure calpain 3”? They are a group that keeps track of how many people have LGMD2A. Highly recommend finding them and registering.

  • @susanmeadows9146
    @susanmeadows9146 6 лет назад

    OMG same here
    🙄 whatcha looking at?