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  • Becky became a registered member 2 years, 1 month ago

    • Hello Becky! My name is Dani Liptak! I have a form of MD called facioscapulohumeral dystrophy! Please feel free to reach out to me about anything!

    • Hi there Becky. 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 your own experiences. If you have any questions about the forums or would like me and Dani to touch in a certain topic please let us know.

      • Hi Becky
        From which country are you. I am from India. We expect lot of first hand information from the west as we do not have much research here.

        My daughter nearing 25 have lgmd 2a and she reasonably independent. How about you.

        Best regards
        Rameshan

          • USA
              • I will be age 50 this month. I have been dependent on a motorized wheelchair since 2005 (age 35) and really needed it before that, but I think we should do what we can until we can’t and I have had great support from my parents. I have worked for the same organization for about 23-24 years and work from home as needed since 4/2019. I had a fall in 1/2019 and now I cannot do any walking and have weakened globally. I can stand on my left leg but now have to use a shower chair and someone has to bathe me. This was devastating and I knew it would happen one day but I was not ready for it. I am too actively to be limited like that but I have no choice. I do use a device to help me stand about 2-3 times a week but it’s not enough. I need to stand every day and at least twice a day. Anyway, here I am adjusting to the changes and continuing to do all the things I was doing in a modified way. My parents still help me and it is going to be devastating when they can no longer help me. Hopefully, that will not come for many years. I still drive with modifications (use hands). I hope you are able to help your daughter and be as supportive as you can as it is devastating to lose basic physical functions and having to depend on others.
                  • Becky, I relate to this on all levels. I have thought and said the exact same things. Know you are not alone in any of this. I too rely a lot on my parents and the thought of them not being around, not having that relationship and having to shift to a person I don’t know if scary for me.
                    What is it you do for work?

                  • Hi Dani! I work for Disability Determination Services for the state of Louisiana. We use Social Security’s rules and regulations to determine disability.
                    • Your story is truly inspiring. Working 23 years nonstop and raring to go is really with such a crippling disease is the mark of a champion. Surely your grit and spirit will be true inspiration for people like us. All the best.
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