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Conditions and Diseases > Muscular Dystrophy Forum > Living with Muscular Dystrophy
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Q: Living with Muscular Dystrophy
asked by: Terriesales on February 13th, 2009
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I'd love to hear what it's like to live with MD. Or, just please, share your true thoughts, happiness, frustrations, joy, etc.... I'm a family member who desperately need to understand what one goes through on a daily basis, weekly, etc..
Thank youfor sharing.
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Postivethinker
replied on March 24th, 2009
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How to be a support person
Dear Terriesales so sorry to here the news about your family members. I took care of my mother till she passed away do to Limb Girdle Muscular Dystrophy my brother also has it and so do I. I have now experienced both sides and all people are different at dealing with their disease. Mother was very bitter about her disease but I have to say she did manage to live alone till she was 68. After she fell and broke her hip she could not walk at all and ended up going to the nursing home. This was mainly due to the fact that I was then diagnosed with the same thing and had a brother that also has the same thing. Please keep in mind its o.k to offer help the person always has the option of saying no and don't take this as a put off but some times you need to know that you can still do things for yourself. When I am having a bad day I will ask my husband for help and he is always willing to help. But he also knows to let me do it even if am struggling. If I can be of any help feel free to let me know.
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Terriesales
replied on March 25th, 2009
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Thank you positive thinker
Appreciate you taking the time to respond and sharing your feelings and experience. Wanted to email you, but it didn't supply it. hope you get this message. Terri
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ambshah
replied on July 9th, 2009
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Muscular Dystrophy affected life
I have a cousin with MD diagnosed at age 3 today he is 23
he stopped walking at age 10 but is able to use his hands effectively for mobility. hi upper body seems fine to me. he climbs stairs(occasionally) using his hands , is also able to get into a rickshaw or car. i noticed that his feet did not move on thier own. and he had to use his hands to move them. i wonder if there is any device that could be used as a harness on his waist and lift him. i had seen a device on honda(robotics) website that seemed perfect. but it is still in research and they do not respond to emails. he just graduated from college and is looking for a job now. apart from loss of mobility he seems fine at this point. he is overweight on the upper body, but i feel that helps in keeping his arms strong ( i am not a doctor), he has difficulty in getting on a chair. but on the ground he is fairly agile.
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