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Leah Leilani started the topic Keisha Greaves, MDA’s New National Ambassador in the forum Adults With Muscular Dystrophy 12 hours, 47 minutes ago
It was announced the other day that Keisha Greaves is the new Muscular Dystrophy Association National Ambassador.
Keisha, a fashion entrepreneur and neuromuscular disease advocate, has a type of muscular dystrophy called Limb Girdle MD. She is also the CEO of the clothing brand Girls Chronically Rock.
Check out this article on MD News about…[Read more] -
Susan started the topic Husband being Tested in the forum Diagnosis Information and General Questions 13 hours, 18 minutes ago
Hello, my name is Susan and my husband is currently being tested. His symptoms began several years ago, as an adult, and is progressively getting worse. So far, the genetic testing they have done, gave no answers, his EMG came back normal, yet, his specialist still feels he may have something going on. My husbands symptoms include recurrent…[Read more]
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Leah Leilani started the topic Enemas and Suppositories for Constipation in the forum Adults With Muscular Dystrophy 1 day, 10 hours ago
Have you ever been so constipated that you needed an enema or suppository? Where you able to finally relieve yourself and find a daily laxative to prevent constipation? What laxative are you now taking and have you needed an enema or suppository again?
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Leah Leilani started the topic Carrying Items While Shopping in the forum Adults With Muscular Dystrophy 1 day, 12 hours ago
How do you carry items while shopping? Do you get a basket or attempt to use a cart? Do you pile everything on your lap and foot rest and just pray that nothing falls?
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Danielle "Dani" Liptak started the topic Non-disabled people complaining about isolation in the forum Coronavirus (COVID-19) and MD 1 day, 19 hours ago
<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]
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Pete Barron replied to the topic Falling: Landing and Hand Pain in the forum Diagnosis Information and General Questions 2 days, 12 hours ago
My sister who has MD2 like me, spends most of the time walking with arm crutches. She has fallen and broken bones in both hands too many times to count. She has also had countless surgeries to put them back together again with varying degrees of success. Somehow our bones don’t heal well or sometimes not at all. With one or the other hand in a…[Read more]
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Leah Leilani started the topic Article: Dungeons and Dragons Helps Me Live Without Duchenne for a Moment in the forum Adults With Muscular Dystrophy 2 days, 12 hours ago
“I can be whomever I want and make my character’s body do what it wants because Duchenne muscular dystrophy doesn’t exist in the world of D&D. Neither do the everyday struggles I have to face because of it. It’s one of the best escapes from reality I’ve found during the difficult time of the pandemic.”
Hawkin has discovered a way to escape from…[Read more] -
Sahel Golestani became a registered member 2 days, 13 hours ago
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Hi Sahel 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…
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Danielle "Dani" Liptak started the topic Falling: Landing and Hand Pain in the forum Diagnosis Information and General Questions 3 days, 14 hours ago
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]
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Pete Barron replied to the topic Disability Etiquette in the forum Adults With Muscular Dystrophy 5 days, 8 hours ago
I like being a nice guy too, but when somebody is rude to me I try to send it back! They can’t complain that I’m rude when they said the same to me. Most people kind of “guffa” and then rephrase it and I will explain. I like the opportunity to educate people, I see that as part of our job.
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Leah Leilani started the topic Being Excited About Springtime in the forum Adults With Muscular Dystrophy 6 days, 12 hours ago
What do you like most about the Spring season and what are you most excited about?
One of my favorite things about Springtime is the hummingbirds that lay their eggs in nests hidden in the trees in my backyard. I’m also looking forward to sunny weather and getting more vitamin D. -
Leah Leilani started the topic Supportive Parents in the forum Adults With Muscular Dystrophy 1 week ago
Are your parents supportive and helpful when it comes to your health and your life with MD? Do they help you attain a happy, successful lifestyle while prioritizing your health and wellness? Would you consider your parents to be your advocates and part of your support system?
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Leah Leilani started the topic Plans For Easter Sunday in the forum Adults With Muscular Dystrophy 1 week ago
What are your plans for this Easter Sunday? Are you vaccinated and able to attend church or be with your extended family? Will you be cooking and eating any special food?
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Danielle "Dani" Liptak started the topic Saying "Thank You" in the forum Mental Health and Positivity 1 week ago
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]
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james kelly became a registered member 1 week, 1 day ago
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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]
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Hi there James 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…
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Susan became a registered member 1 week, 1 day ago
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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]
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Hi Susan 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…
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Danielle "Dani" Liptak started the topic Assumptions Made By the Public in the forum Muscular Dystrophy Tips, Tricks and Advice 1 week, 1 day ago
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?
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Leah Leilani started the topic Article: What a ‘Typical’ Day Is Like For My Son, Alfie, and Me in the forum Adults With Muscular Dystrophy 1 week, 2 days ago
“All of the therapies, pieces of equipment, stretches, and exercises are incredibly important, but the most important thing is Alfie’s happiness.”
Alfie’s mother, Prudence writes about her and her son’s daily routine and the struggle to find opportunities to balance the joys of life and medical necessities. Read her new article “What a ‘Typical’…[Read more] -
Danielle "Dani" Liptak started the topic The term "patient" vs "person with disability" in the forum Diagnosis Information and General Questions 1 week, 3 days ago
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]
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Mary became a registered member 1 week, 4 days ago
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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]
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Hi there Mary 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…
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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.