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  • Danielle "Dani" Liptak posted a new activity comment 2 days, 12 hours ago

    Welcome, Winnie! My name is Dani, and I was diagnosed with Facioscapulohumeral (FSHD) Muscular Dystrophy at 12.
    The MD News Forums are like a support group where you can share experiences, give advice, and discuss life with MD. Please know that this is a safe and judgment-free zone. If you have any questions or want to suggest a topic or give…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 3 days, 8 hours ago

    Welcome, Linda! My name is Dani, and I was diagnosed with Facioscapulohumeral (FSHD) Muscular Dystrophy at 12.
    The MD News Forums are like a support group where you can share experiences, give advice, and discuss life with MD. Please know that this is a safe and judgment-free zone. If you have any questions or want to suggest a topic or give…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 3 days, 8 hours ago

    Welcome, Sahel! My name is Dani, and I was diagnosed with Facioscapulohumeral (FSHD) Muscular Dystrophy at 12.
    The MD News Forums are like a support group where you can share experiences, give advice, and discuss life with MD. Please know that this is a safe and judgment-free zone. If you have any questions or want to suggest a topic or give…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 3 days, 8 hours ago

    I think it is pretty comfortable, but then my friend offered me a pillow to put behind my head, and I was like, “Wow, now this is comfort!” But I guess it depends on the activity that I am doing and the comfort I need. If I get too comfortable, I might fall asleep. My friends that have sat in my wheelchair seemed surprised by its comfort as well.

  • Danielle "Dani" Liptak posted a new activity comment 3 days, 8 hours ago

    Yes, I have tried to talk therapy, and thankfully, it was helpful. The downside was that it took a long time to find someone that was right for me. I guess all therapists aren’t alike, and you have to go through a few before you find one that works for you. that doesn’t mean that they tell you what you want to hear, but instead, they give you…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 1 week, 1 day ago

    Hi Susan, not knowing what is happening to your husband can be scary and make one feel helpless. When I was first diagnosed, I was also confused, but I felt some sort of relief once I had an answer. I hope you both will feel the same. I want you to know whatever the diagnosis, there is a strong community here for you! If he doesn’t have MD, I know…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 1 week, 1 day ago

    That is great! Keisha is amazing, and I purchased a shirt from her brand too! I love it!

  • Danielle "Dani" Liptak posted a new activity comment 1 week, 2 days ago

    I appreciate it and the story Pete!

  • Danielle "Dani" Liptak posted a new activity comment 1 week, 2 days ago

    I have tried all of the above! I find it easier to use some shopping carts with my power chair, but that cannot be very easy if there are many people.

  • <p style=”text-align: left;”>Do you feel frustrated reading or hearing about people without disabilities complaining about isolation due to Covid? I’m not saying their feelings aren’t valid, what I’m saying is disabled people have been living that way for years who’s voices aren’t uplifted during this pandemic. As someone who has been isolated…[Read more]

  • Over the weekend I fell in my garage which is concrete floors. I landed hard on my hands so I wouldn’t fall and hit my head. In doing so my hands took most of the impact. Now it hurts to do anything with them. I talked to my physical therapist and she said rest and some light stretching might help. How do you deal with hand pain? Do you use your…[Read more]

  • I have some friends that go above and beyond when it comes to my disability. Every day people can do things to help me, such as not being ableist or creating barriers for me in public. But there are people I am close with that are always there when I need them and for whatever reason. I have been trying to think of ways to thank you or show them…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 2 weeks, 2 days ago

    Welcome, James! 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]

  • Danielle "Dani" Liptak posted a new activity comment 2 weeks, 2 days ago

    Welcome, Susan. 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]

  • Has anyone, such as a waiter, bus driver, regular person on the street assumed that you can’t read because you use a mobility device? Have you ever been ignored in a setting and realized later it was because the person thought you couldn’t read or speak? What assumptions have been made about you by other people? How have you handled those situations?

  • When you are called a patient by someone who is not a medical professional or not in a professional setting, how does that make you feel? Do you think the term “patient” has its place when in a medical setting? I prefer to be called a person with a disability or a disabled person over any other terminology. I don’t allow special, cripple, lame,…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 2 weeks, 5 days ago

    Welcome, Mary! 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]

  • Danielle "Dani" Liptak posted a new activity comment 2 weeks, 5 days ago

    That is a good response!

  • Danielle "Dani" Liptak posted a new activity comment 2 weeks, 5 days ago

    I think they need to be taught to kids in school, and things need to change for marginalized groups. But in my mind, anyone can be disabled, but not everyone can experience racial discrimination.

    • I never really thought of it that way. Thanks for pointing that out. Also, school would be much more helpful and interesting if kids were taught about more current day societal issues. Not that disability and racial discrimination are just current day and don’t have a horrible history. I mean more so how to solve these issues and combat them.

  • Danielle "Dani" Liptak posted a new activity comment 3 weeks, 1 day ago

    I agree with your statements. I will add if I meet a stranger and we are having a nice conversation, and I do not bring up my disability, neither should they. I think if they want to ask, they should see if it is to satisfy their curiosity. I can’t see how it could be for any other reason. If my disability weren’t visible, it wouldn’t be a topic…[Read more]

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