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  • Does anybody have OPMD?

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    Old 09-26-2016, 09:34 PM   #1
    Frank4
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    Does anybody have OPMD?

    Unfortunately, I was diagnosed approx. 3 yrs. ago(currently 69) . I suspected the onset due to the identical symptoms of my father. His brother & sister had OPMD.

    An initial obvious symptom is the drooping of the eyelids(ptosis) & difficulty swallowing (diplopia). I used to be an avid golfer, however, due to the inability to lean forward (without falling), golf is not an option.

    I definitely knew something was not normal when I could not leap forward (at the beach) nor could I jump; much less run. All of those options are not even close to possibilities. The Hip Flexors are a major issue. Leaning forward requires some type of structure to assist me in correcting my stance. I use my hands on my thighs to assist me in a upright position. Without any type of support, to straighten the upper torso, I will stay in a locked position until I slide my hands up my leg. Even a grocery bag is a challenge to carry.

    The gait is awkward, walking is slow, however, still walking. The slightest ascend takes a bit more energy. I workout daily (6 days) @ a gym & I feel it enhances my stability. I live in La Quinta, CA (near Palm Springs). Look forward to your response. This is my first post. I'm activly looking for a forum platform with similar OPMD effects.

    Last edited by Frank4; 09-26-2016 at 10:16 PM.

     
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    Old 10-07-2016, 03:08 AM   #2
    corrie778
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    Re: Does anybody have OPMD?

    Hello Frank
    i have also in the past experianced the same difficultys as you have.unfortunately i have been wheelchair bound for the last 9yrs there abouts.due to a bad fall i had to have a hip replaced. Its a long story. Im 61 this yr and i also do chair exercises and peddle my bike to keep myself active.I still love flying to Australia to visit my daughter.Its true there is life in a wheelchair.lol and it goes faster than my legs ever did.Don't get me wrong i fought so hard to stay on my feet.Its been lovely to here from you Frank.I have spend all my life trying to find someone to share my experiances with MD.Although differant.There is a similarity.Let's keep intouch

    Kind Regards

    Patsy

    Last edited by mod85; 10-08-2016 at 02:09 AM.

     
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    Old 11-14-2017, 09:30 AM   #3
    Beaten Man
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    Re: Does anybody have OPMD?

    Quote:
    Originally Posted by Frank4 View Post
    Unfortunately, I was diagnosed approx. 3 yrs. ago(currently 69) . I suspected the onset due to the identical symptoms of my father. His brother & sister had OPMD.

    An initial obvious symptom is the drooping of the eyelids(ptosis) & difficulty swallowing (diplopia). I used to be an avid golfer, however, due to the inability to lean forward (without falling), golf is not an option.

    I definitely knew something was not normal when I could not leap forward (at the beach) nor could I jump; much less run. All of those options are not even close to possibilities. The Hip Flexors are a major issue. Leaning forward requires some type of structure to assist me in correcting my stance. I use my hands on my thighs to assist me in a upright position. Without any type of support, to straighten the upper torso, I will stay in a locked position until I slide my hands up my leg. Even a grocery bag is a challenge to carry.

    The gait is awkward, walking is slow, however, still walking. The slightest ascend takes a bit more energy. I workout daily (6 days) @ a gym & I feel it enhances my stability. I live in La Quinta, CA (near Palm Springs). Look forward to your response. This is my first post. I'm activly looking for a forum platform with similar OPMD effects.
    I got it in my 40's, I am now 44.

     
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    Old 08-19-2022, 04:47 PM   #4
    limpingolderguy
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    Re: Does anybody have OPMD?

    hey frank,

    Interesting that I have been diagnosed with bethlem myopathy in 2020 but with similiar symptoms that is described with opmd. Now 68 with right hip flexor weakness that results in very bad walking gait needing cane or stick etc. Used to be serious long distance runner for 30+ years now barely walking slow on flat wide trails.

    Also, what caught my attention to opmd is that around 2003 I had swallowing issues where mucous buildup in throat constantly there. multiple layrnx scopes and upper endoscopy in 2004 only showed some irritation? Now today Im thinking maybe some crossover dystrophy? IDK. I'm just a lay person but my neuro doc said there are many mystrophies in genetic defects we are still learning. BTW. Bethlem myopathy is related to COL6 gene VUS.

     
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