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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]

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]

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?

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?

<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]

“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]

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]

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.

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?

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?

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]

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?

“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]

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]