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  • Since having shot 3 weeks ago my jaw has effected my mouth. I also got hit with TMJ!! I have Becker’s Dystrophy and have been in power chair for 20 years.  I’m getting weaker and am now 46 but this shot has sent me back. Covid has made me scared as we know any respiratory infection would be a serious issue. Emotional trauma is difficult to deal…[Read more]

    • The vaccine has been rough one everyone, some more so than others. I hope that you are able to resume your old normal again very soon!

  • Cynthia Barrett posted a new activity comment 3 months, 3 weeks ago

    It’s so nice to hear from you! My son was diagnosed with
    Becker’s MD when he was 8. He is now 45 and his disease is progressing but his heart is growing larger everyday with determination to keep going!! He’s so smart and special!! He keeps me sane most days!! He needs almost total care but he expresses his needs if needed. I’m 71 and…

    [Read more]

    • Hi Cynthia, your fear is valid, and I know it is a concern for many family members as their loved one’s age. Something my parents did for me was meet with a disability lawyer and set some things up that would protect me once they pass. I hope never to need to go into a care facility as I have heard horror stories about them. A lot of my fear is…[Read more]

    • Cynthia, I understand why you’re going through since my parents are older as well and their health isn’t what it used to be. My parents did the same as Dani’s and spoke with a lawyer to set up a Special Needs Trust to secure my future should something happen to my parents. My parents house (which I live in) and my wheelchair accessible van h…

      [Read more]

  • Cynthia Barrett became a registered member 4 months ago

    • Welcome, Cynthia! My name is Dani Liptak. I am a forum moderator, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Let me know if there is a topic that you would like to discuss or if you have any…[Read more]

    • Hi there Cynthia and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

      Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

      [Read more]

      • It’s so nice to hear from you! My son was diagnosed with
        Becker’s MD when he was 8. He is now 45 and his disease is progressing but his heart is growing larger everyday with determination to keep going!! He’s so smart and special!! He keeps me sane most days!! He needs almost total care but he expresses his needs if needed. I’m 71 and…

        [Read more]

        • Hi Cynthia, your fear is valid, and I know it is a concern for many family members as their loved one’s age. Something my parents did for me was meet with a disability lawyer and set some things up that would protect me once they pass. I hope never to need to go into a care facility as I have heard horror stories about them. A lot of my fear is…[Read more]

        • Cynthia, I understand why you’re going through since my parents are older as well and their health isn’t what it used to be. My parents did the same as Dani’s and spoke with a lawyer to set up a Special Needs Trust to secure my future should something happen to my parents. My parents house (which I live in) and my wheelchair accessible van h…

          [Read more]

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