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  • Recently I have experienced pain in my feet, specifically my heel, from plantar fasciitis. It is an inflammation of a thick band of tissue that connects the heel bone to the toes. The inflamed tissue runs across the bottom of the foot. Symptoms include stabbing pain near the heel. Pain might be worst in the morning.

    I have been working with my…[Read more]

  • Danielle "Dani" Liptak posted a new activity comment 9 hours, 45 minutes 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]

  • Danielle "Dani" Liptak posted a new activity comment 9 hours, 45 minutes ago

    Welcome, Ed! 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]

  • Anyone else has a fear of going to medical appointments. I was supposed to have blood drawn for labs. I am waiting in the lobby for 45 minutes to find out that my doctor didn’t put any orders. I was upset because I was stuck in a waiting room listening to sick people around me and afraid of catching something. I ended up emailing my doctor,…[Read more]

  • Do you have headlights on your mobility device when you travel out at night? What do you use to see or be seen at night when going out? I have seen some people running or walking and using their cellphone light, but I don’t want to waste my battery.

    When I got my most recent chair, I opted for headlights. I think they were overpriced and could…[Read more]

  • Are you part of a national registry for your specific type of MD? I believe in the Facioscapulohumeral Muscular Dystrophy Patients and Family Members Registry. I fill out yearly forms and up to date on new findings and research.

    Do you have a rare form of MD but are not part of a national or international registry? I like the registry because I…[Read more]

  • During the lockdown and even now, I spent a lot of time in the kitchen. I tried new recipes and old favorites. I got a few new kitchen appliances too, but my favorite is my air fryer. I use it for so much, from chicken wings to zucchini chips.

    Do you have a favorite kitchen appliance? are you like me and live in a small space, so you have to be…[Read more]

  • How do you feel about taking down holiday decorations once it is over? Do you have someone help you? Is it easier to set up or to take down decorations? Does your house feel bare after, or do you like it more without the decorations?

    Do you think people were extra decorative this year because of the pandemic? I noticed the majority of my…[Read more]

  • How do you avoid bumping into or running over people or animals when using your mobility devices?

    I have run over my dog’s toes while walking him on the leash, but he has never reacted. I still feel terrible. I also worry when I use my walker at home, and my cat is walking next to me that I will bump or run her tail over. I make sure not to do…[Read more]

  • Have you ever had a hernia? I recently underwent a hernia repair along with another surgery. Have you had acid reflux or diagnosed with GERD? Did you know a hernia can cause bad acid reflux and other issues. I often wondered if, in the past, if I caused the small tear in my esophagus from falling. Do you wonder if your type of MD can affect your…[Read more]

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

    Welcome, Neil! 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 1 week ago

    Welcome, Barb! 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 1 week ago

    Welcome, Kelly! 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 1 week ago

    Welcome, Susana! 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 1 week ago

    Welcome, Sandy! 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 1 week ago

    Welcome, Jason! 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 1 week ago

    Welcome, Jerry! 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]

  • A little over one week ago, I had major surgery for gastrointestinal issues. The recovery has been challenging, and I was in the hospital for close to a week. I was very impressed with the COVID restriction in the hospital. It was lonely not having any visitors, and I was so weak from the surgery that I couldn’t enjoy much of anything. I have been…[Read more]

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

    Dinesh, is it difficult to find personal care attendants in India? Does the government offer any help, or do you have to find them on your own? I hope that you will be able to find someone reliable and helpful.

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