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Welcome to the FSHD Community. Here you will find other families whose lives are touched by FSHD. Please connect, support and inspire each other.

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    • Nice to meet you all! My name is Robert.

    • MINGO LINGO   It doesn’t bither me a bot… If my words seem backway halfward. I’m only trying to pake a moint… Though at first glance it seems absurd.     But if you choose to reep on keading, A take the fime to tigure out. What on earth I’m trying to say, And what this poems all about.     You cay just mome to realize… When this message becomes clear, That sometimes the most confusing words… Are the ones we need to hear.     Sometimes heople try so pard… To communicate their feelings, But we tune them out because it’s difficult, To comprehend what they’re revealing.     As I end this poem I will declare… My intentions of this mission. The foundation of understanding is… The willingness to listen.     Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo by Amy. B. Mingo

    • COWARD OR EMPOWERED     They say he was a coward… Because he didn’t fight. When they taunted him relentlessly… He held back with all his might.     Even though he was a master… In the art of self-defense. He chose to just ignore their words… And use his common sense.     He wasn’t worried in his heart… If they chose to think he’s weak. He knew that it took much more strength… To turn the other cheek.     If we all would try to learn… This type of self-control. We allow offenders time to think… And love may take its toll.     Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo by Amy. B. Mingo

    • COWARD OR EMPOWERED     They say he was a coward… Because he didn’t fight. When they taunted him relentlessly… He held back with all his might.     Even though he was a master… In the art of self-defense. He chose to just ignore their words… And use his common sense.     He wasn’t worried in his heart… If they chose to think he’s weak. He knew that it took much more strength… To turn the other cheek.     If we all would try to learn… This type of self-control. We allow offenders time to think… And love may take its toll.     Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo by Amy. B. Mingo

    • COWARD OR EMPOWERED     They say he was a coward… Because he didn’t fight. When they taunted him relentlessly… He held back with all his might.     Even though he was a master… In the art of self-defense. He chose to just ignore their words… And use his common sense.     He wasn’t worried in his heart… If they chose to think he’s weak. He knew that it took much more strength… To turn the other cheek.     If we all would try to learn… This type of self-control. We allow offenders time to think… And love may take its toll.     Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo by Amy. B. Mingo

    • COWARD OR EMPOWERED     They say he was a coward… Because he didn’t fight. When they taunted him relentlessly… He held back with all his might.     Even though he was a master… In the art of self-defense. He chose to just ignore their words… And use his common sense.     He wasn’t worried in his heart… If they chose to think he’s weak. He knew that it took much more strength… To turn the other cheek.     If we all would try to learn… This type of self-control. We allow offenders time to think… And love may take its toll.     Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo by Amy. B. Mingo

    • COWARD OR EMPOWERED     They say he was a coward… Because he didn’t fight. When they taunted him relentlessly… He held back with all his might.     Even though he was a master… In the art of self-defense. He chose to just ignore their words… And use his common sense.     He wasn’t worried in his heart… If they chose to think he’s weak. He knew that it took much more strength… To turn the other cheek.     If we all would try to learn… This type of self-control. We allow offenders time to think… And love may take its toll.     Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

    • Poetry For The Soul. Photo By Amy. B. Mingo

    • QUALITY CARING You say you understand… But I have to disagree. You say you feel my pain… Not to the same degree. Even if we suffer… The same calamities. My view might be quite different… From what my neighbor sees. We should be sympathetic when… Someone’s future is looking bleak. We shouldn’t say we know how they feel… Their situation is unique. It’s good to be supportive… But we shouldn’t be overbearing. Sometimes silence is the key… To show support for whom you’re caring. When sharing someone’s pain… It’s hard to say how much you care. Most times they already know… By the fact that you are there.   Robert. A. Mingo (Humanitarian Poet)

Comments




  • Hi, Just found this site, working on getting back into the MDA community, I have FSH, in Florida, and just looking for people to connect with, and to compare notes with. I'm 36, and have had this since about 20 years old.
    tylerbugmom, 3 weeks ago| Flag
  • I AM STILL LOOKING FOR PEOPLE IN OR NEAR KANSAS WITH FSHD THAT WOULD LIKE TO CHAT AND POSSIBLY MEET IN PERSON ONE DAY. IF ANYONE KNOWS OF SOMEONE PLEASE LET ME KNOW.
    pickie11, 1 month ago| Flag
  • I am new to this site, actually I signed up a while ago and completely forgot. My husband, 45 has FSHD. I am hoping to find support and people or couples in our same situation. I believe he has had FSHD since early childhood, but was diagnosed around the age of 13 or 14.
    Scruffy, 2 months ago| Flag
  • This morning I woke up and took a big long stretch only to hear a very loud POP in my neck. Now I cannot look to the right or lift my right arm over my head. This is the 2nd time in the past year this has happened. I spoke to my MDA doc and he basically said to take advil, put a heating pad on it, and it will get better over time. I kind of got the impression to expect this to occur more often. The pain is fairly bad on my scale. I'm just curious, has anyone else experienced this? Is it fairly normal with FSH?
    Thanks!Jennifer
    ozimekje, 2 months ago| Flag
  • My name is Rodney and I live in Salt Lake City Utah. I have fsh and have lived with it since 94. I was trying out for the football team and I had to do a physical. They noticed that my shoulder blades were sticking out pretty bad. But I read some blogs and its nice to hear from people who have what I have. I'm 28 now and live with my brother. I would like to get to know some people who have what I have so..............
    Rod_Nelson, 2 months ago| Flag

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