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  • Becky posted a new activity comment 1 day, 3 hours ago

    I have been using electric toothbrushes for years and I switched to a manual for several years and i recently switched back and my dental hygienist noticed and so did I. My oral B electric toothbrush works good. I have to lean on my upper body on my wheelchair armrest and hold one hand up with the other hand but I manage. If my hand slip,…

    [Read more]

  • Becky posted a new activity comment 2 days, 1 hour ago

    The reviews on Amazon were not that great. Does BLU work good for you?
      • It has been working well so far! I like it a lot more than holding the electric toothbrush with my weak arms.

      • I still floss and rinse with Listerine, and I have a regular toothbrush that I will use to get to the teeth in the way back of my mouth.

        • I have been using electric toothbrushes for years and I switched to a manual for several years and i recently switched back and my dental hygienist noticed and so did I. My oral B electric toothbrush works good. I have to lean on my upper body on my wheelchair armrest and hold one hand up with the other hand but I manage. If my hand slip,…

          [Read more]

    • Becky posted a new activity comment 2 days, 2 hours ago

      I did not know about the BLU toothbrush. Thank you for sharing. I use a rechargeable toothbrush but I am going to get a BLU and see how I like it. My shoulders are really weak so I have some difficulty brushing my teeth even with the rechargeable.
        • The reviews on Amazon were not that great. Does BLU work good for you?
            • It has been working well so far! I like it a lot more than holding the electric toothbrush with my weak arms.

            • I still floss and rinse with Listerine, and I have a regular toothbrush that I will use to get to the teeth in the way back of my mouth.

              • I have been using electric toothbrushes for years and I switched to a manual for several years and i recently switched back and my dental hygienist noticed and so did I. My oral B electric toothbrush works good. I have to lean on my upper body on my wheelchair armrest and hold one hand up with the other hand but I manage. If my hand slip,…

                [Read more]

        • I really never thought about disability pride or being proud of my accomplishments until recently.  Like you Dani I have just tried to navigate through life the best I can.  While this amazes and inspires some people–that I work and drive and have been well cared for–I feel I am doing normal things-certainly nothing special. I have recently a…[Read more]

          • Thank you so much for sharing! I agree, I forget that I am not lazy, that I tire quicker than most! I, too, need to remind myself not to compare my life to others because it will only bring me down. I do not have to follow what society deems “the perfect life,” I can have my own perfect life that is adapted for me and by me! Again, thanks for sharing!

        • Becky posted a new activity comment 1 month ago

          Hi Dani! I work for Disability Determination Services for the state of Louisiana. We use Social Security’s rules and regulations to determine disability.
            • Is that difficult? 23 years is a good amount of years at one job so is it wrong to assume you enjoy the work? I hope to find a career that I can work for that long!

          • Becky posted a new activity comment 1 month, 1 week ago

            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…

            [Read more]

            • 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?

            • Becky replied 1 month ago
              Hi Dani! I work for Disability Determination Services for the state of Louisiana. We use Social Security’s rules and regulations to determine disability.
                • Is that difficult? 23 years is a good amount of years at one job so is it wrong to assume you enjoy the work? I hope to find a career that I can work for that long!

              • 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.
              • Becky posted a new activity comment 1 month, 1 week ago

                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…

                    [Read more]

                    • 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?

                    • Becky replied 1 month ago
                      Hi Dani! I work for Disability Determination Services for the state of Louisiana. We use Social Security’s rules and regulations to determine disability.
                        • Is that difficult? 23 years is a good amount of years at one job so is it wrong to assume you enjoy the work? I hope to find a career that I can work for that long!

                      • 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.
                    • Tari CK and Profile picture of BeckyBecky are now friends 6 months, 3 weeks ago

                    • I agree.  Does anyone know if there are any trials for LGMD type 2A.  I saw one for type 2D.  Why did they choose 2D?  It appears 2A is the most common type because more people have it.

                    • Becky posted an update 1 year, 4 months ago

                      Hi Leah. Nice to meet you.
                      • Becky posted an update 1 year, 4 months ago

                        Hi Dani. Nice to meet you!
                        • Becky changed their profile picture 1 year, 4 months ago

                        • Becky became a registered member 1 year, 4 months 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…[Read more]

                            • 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…

                                      [Read more]

                                      • 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?

                                      • Becky replied 1 month ago
                                        Hi Dani! I work for Disability Determination Services for the state of Louisiana. We use Social Security’s rules and regulations to determine disability.
                                          • Is that difficult? 23 years is a good amount of years at one job so is it wrong to assume you enjoy the work? I hope to find a career that I can work for that long!

                                        • 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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