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  • Even the best doctors don’t have the answers to everything. I don’t agree that they should treat us like it is in our head. With MD alone, being that it rare in the scope of diseases, can have a lot of missed cues. I have been fortunate enough to have a neurologist who could recognize my having MD. However, I haven’t had an answer as to what kind…[Read more]

  • I have spasms, not shaking per se, like in Parkinson. Because of this, I no longer drive. I never know when it is going to happen. It can be mild like when you get a chill or it can be violent. My wife refers to it as the bedrock twitch from the Flintstones.   It is bad that I guess we have to make lite of it.  She even says that I spasm when I a…[Read more]

  • I have thought about it, but because of being in the USA, I don’t think it is covered on Medicare. CBD oil didn’t do anything for me.  For the most part, I deal with the pain. When it gets to me, I lie down for a while till my strength builds up.

  • Barry Glaberman changed their profile picture 1 year, 2 months ago

  • What doctors do say is that muscular dystrophy has no pain. BS! There is a lot of pain associated with muscular dystrophy! Much is due to the fact that muscles are atrophying. As the get weaker and smaller, they are causing strain on the bones and joints that they are attached to. Since pain is subjective, mine can be anywhere from a five to a…[Read more]

  • This is true. However, going back to the late seventies and early eighties, there was a lot of things that had to be incorporated into the start of the ADA way before the government got to vote on it. Unfortunately with the government creating a negative aura, we have to fight with our negative to create a positive. In other words, the squeaky…[Read more]

    • Totally agree! There have been some pretty disheartening things in the news when it comes to persons with disability and the government. Whether it is budget cuts that affect those who need life saving care or treatment, or not being able to afford or see the specialists that are needed to live an acceptable life, it is not fair that everyone…[Read more]

  • I think we have a better chance of witnessing a world miracle before the Industry makes our life easier! If they can rip off our medical providers and us because of need, they will. The main reason is the cost of supply and demand. economics folks.

  • I no longer work because of the MD as well as several other illnesses. My last job was a manager of a hotel. I have worked in retail, wholesale, entrepreneur, janitor, technician, DJ, and delivery. It is important to discuss your illnesses face to face allowing a potential employer to see your capabilities.

    Talking about your disability is a…[Read more]

    • Barry, what job did you have when you started noticing symptoms of MD? Was your employer understanding of circumstances or not?

      I haven’t had many jobs but yes, I think there are advantages to disclosing your disease to your employer under the right circumstances. If you think your boss will be sympathetic to your needs and provide you with s…[Read more]

  • I let my resume speak for itself. I did not mention any disability in my letter of intent either. I  just showed up for my interview with my adaptive equipment for my interview. I focused on my abilities and strengths. There were questions about my disability, however, I tried to refocus on the job at hand. If I needed reasonable accommodations,…[Read more]

  • Although Tommy Hilfiger has a line of clothes, it would be great if it were affordable or at least covered by medical insurance. I personally couldn’t afford $65.00 for a shirt or more for pants. Another case of taking advantage of us.

    • Yeah, I’m not fond of the price either. I understand that maybe the cost is because of the complex design elements but if your going to make a line of clothes for people with disabilities, who by the way, tend to be in poverty, you should price the clothing at a reasonable amount. Just another example of the disabilities tax.

    • That is totally understandable and I completely agree. Sometimes when I am on social media I will leave comments on the companies advertisements. “Love the idea of adaptable clothing, I just wish the price was affordable for everyone” or something like that. Although Tommy Hilfiger might not see it himself, someone might and get a conversation…[Read more]

  • It is insane the cost of healthcare especially for cronic and and rare diseases with no cures. It is also disastrous if you have cancer. We have a school health plan that is state controlled, but they are not taking advantage of bulk purchasing. I mean each department ment in the state negotiates their own policy. My wife gets reduced cost for her…[Read more]

  • Barry Glaberman changed their profile picture 2 years, 2 months ago

  • Barry Glaberman changed their profile picture 2 years, 2 months ago

  • I was diagnosed with, EMG, muscle biopsy (2), and several blood tests and genetic testing. Although genetic is relatively new it was not conclusive. Even now if you look at my body you can see how my limbs and all are getting smaller. At least theyare not saying it is in my head. The doctors also had approved me fo a power chair several years ago.…

    [Read more]

    • I agree that the genetic tests are not conclusive enough. I have had several and my doctors have not been able to find anything. I was however diagnosed with a muscle biopsy many years ago. I am glad that your doctors have been understanding of your disease.

  • Being 63 and not knowing what form of MD I have, makes life more difficult. I have been to two clinics and one SSA doctor. One doctor only specialized in one form of MD therefore he couldn’t be bothered. SSA doctor confirms MD but doesn’t know what kind either. Third doct justs wants a wait and see attitude, but agrees with MD. I
    Am on SSDI and…

    [Read more]

    • Hi there Barry. How were you diagnosed with MD. Did you have a muscle biopsy or blood draw? I completely understand your troubles with doctors. I’ve had many doctors tell me that everything I was experiencing with my body was all in my head or that I was faking my illness.

  • I have undiagnosed Type MD with a possible EDMD. I am disabled because of this and can’t find answers especially from the MDA clinic. I have muscle atrophy and uncontrollable muscle spasms with no difinitive answers. Maybe someone can help.
      • Hey Barry, the moderators on this forum are Leah and Danielle. They should be in shortly to not only welcome you, they will also try to help you in any way that they can. I’m the Forums and Multimedia Director. I suffer from spinal muscular atrophy (SMA), which is in the Muscular Dystrophy family of diseases. I understand what it’s like to have…[Read more]

    • Barry Glaberman became a registered member 2 years, 2 months ago

      • Barry – My name is Michael Morale, and I’m the Forums and Multimedia Director for Muscular Dystrophy News. I want to thank you for taking the time out of your day and becoming a member of our MD forum. Our job is to make sure that we provide you with the information that you’re looking for, and to try to assist you in any way possi…[Read more]

      • Hi there Barry . It is my pleasure to say hello and welcome you to the Muscular Dystrophy forum. My name is Leah Leilani. I am one the moderators here on the forum alongside Dani. I was diagnosed at age nine with a rare form of Muscular Dystrophy called Mitochondrial Myopathy.
        Feel free to participate in any of the forum discussions and share…[Read more]

      • Hi Barry! My name is Dani Liptak and welcome to the MD news forum! I have a form of MD called facioscapulohumeral dystrophy! Please feel free to reach out to me about anything!

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