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Becky

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@beckywelch123

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  • Profile picture of Becky

    Becky replied to the topic Taking Fiber Alongside a Laxative in the forum Adults​ ​With​ ​Muscular Dystrophy 2 years, 8 months ago

    Hi Leah.  This is good to know.  Thanks for sharing.  I have been taking a cleanse more pill daily for about 10 years.  It is all natural and a non stimulant.  I have often thought about switching to Miralax but I cannot seem to make myself start a new regime when something else is working.  However, there are other GI issues that have me think…[Read more]

  • Profile picture of Becky

    Becky replied to the topic A Day on the Hill: an Event Hosted by the LGMD Foundation in the forum Adults​ ​With​ ​Muscular Dystrophy 3 years, 1 month ago

    So glad you shared this story.  I have LGMD and would like to reach out to Ralph Yaniz but not sure how.  I am not so tech savvy.  I want the lawmakers to reinstate the option for those disabled people that work the option to buy Medicaid as a secondary insurance to cover PCA services.   That is how I paid for PCA until it was removed in 2014 with…[Read more]

    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 3 years, 1 month ago

      I understand your frustration. I hope there is a way for people who need the help get it, I agree there must be a better way.

  • Profile picture of Becky

    Becky posted a new activity comment 3 years, 2 months 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]

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    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 3 years, 2 months ago

      I agree about the toothpaste splatter! It is awful. I have noticed that doesn’t happen with the BLU which is very nice.

  • Profile picture of Glendalee Deruiter

    Glendalee Deruiter and Profile picture of BeckyBecky are now friends 3 years, 2 months ago

  • Profile picture of Becky

    Becky posted a new activity comment 3 years, 2 months ago

    The reviews on Amazon were not that great. Does BLU work good for you?

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      • Profile picture of Danielle "Dani" Liptak
        Danielle "Dani" Liptak replied 3 years, 2 months ago

        It has been working well so far! I like it a lot more than holding the electric toothbrush with my weak arms.

      • Profile picture of Danielle "Dani" Liptak
        Danielle "Dani" Liptak replied 3 years, 2 months ago

        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.

        • Profile picture of Becky
          Becky replied 3 years, 2 months 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]

          • Profile picture of Danielle "Dani" Liptak
            Danielle "Dani" Liptak replied 3 years, 2 months ago

            I agree about the toothpaste splatter! It is awful. I have noticed that doesn’t happen with the BLU which is very nice.

    • Profile picture of Becky

      Becky posted a new activity comment 3 years, 2 months 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.

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        • Profile picture of Becky
          Becky replied 3 years, 2 months ago
          The reviews on Amazon were not that great. Does BLU work good for you?
            • Profile picture of Danielle "Dani" Liptak
              Danielle "Dani" Liptak replied 3 years, 2 months ago

              It has been working well so far! I like it a lot more than holding the electric toothbrush with my weak arms.

            • Profile picture of Danielle "Dani" Liptak
              Danielle "Dani" Liptak replied 3 years, 2 months ago

              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.

              • Profile picture of Becky
                Becky replied 3 years, 2 months 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]

                • Profile picture of Danielle "Dani" Liptak
                  Danielle "Dani" Liptak replied 3 years, 2 months ago

                  I agree about the toothpaste splatter! It is awful. I have noticed that doesn’t happen with the BLU which is very nice.

        • Profile picture of Becky

          Becky replied to the topic July is Disability Pride Month in the forum Member Spotlight 3 years, 2 months ago

          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]

          • Profile picture of Danielle "Dani" Liptak
            Danielle "Dani" Liptak replied 3 years, 2 months ago

            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!

        • Profile picture of Becky

          Becky posted a new activity comment 3 years, 3 months 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.

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            • Profile picture of Danielle "Dani" Liptak
              Danielle "Dani" Liptak replied 3 years, 3 months ago

              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!

          • Profile picture of Becky

            Becky posted a new activity comment 3 years, 3 months 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]

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            • Profile picture of Danielle "Dani" Liptak
              Danielle "Dani" Liptak replied 3 years, 3 months ago

              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?

            • Profile picture of Becky
              Becky replied 3 years, 3 months 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.
                • Profile picture of Danielle "Dani" Liptak
                  Danielle "Dani" Liptak replied 3 years, 3 months ago

                  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!

              • Profile picture of Rameshan
                Rameshan replied 3 years, 3 months ago
                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.
              • Profile picture of Becky

                Becky posted a new activity comment 3 years, 3 months ago

                USA

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                  • Profile picture of Becky
                    Becky replied 3 years, 3 months 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]

                    • Profile picture of Danielle "Dani" Liptak
                      Danielle "Dani" Liptak replied 3 years, 3 months ago

                      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?

                    • Profile picture of Becky
                      Becky replied 3 years, 3 months 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.
                        • Profile picture of Danielle "Dani" Liptak
                          Danielle "Dani" Liptak replied 3 years, 3 months ago

                          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!

                      • Profile picture of Rameshan
                        Rameshan replied 3 years, 3 months ago
                        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.
                    • Profile picture of Tari CK

                      Tari CK and Profile picture of BeckyBecky are now friends 3 years, 9 months ago

                    • Profile picture of Becky

                      Becky replied to the topic Suggestions for clinical trials in the forum Science, Research, Clinical Trials 3 years, 10 months 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.

                    • Profile picture of Becky

                      Becky posted a new activity comment 4 years, 7 months ago

                      Hi Leah. Nice to meet you.

                      • Profile picture of Becky

                        Becky posted a new activity comment 4 years, 7 months ago

                        Hi Dani. Nice to meet you!

                          • Profile picture of Danielle "Dani" Liptak
                            Danielle "Dani" Liptak replied 4 years, 6 months ago

                            Hey Becky! I hope you had a good weekend! Check out some of our forums and join in on any that seem interesting! Enjoy the week!

                        • Profile picture of Becky

                          Becky changed their profile picture 4 years, 7 months ago

                        • Profile picture of Danielle "Dani" Liptak

                          Danielle "Dani" Liptak and Profile picture of BeckyBecky are now friends 4 years, 7 months ago

                        • Profile picture of Becky

                          Becky became a registered member 4 years, 7 months ago

                          • Profile picture of Danielle "Dani" Liptak
                            Danielle "Dani" Liptak replied 4 years, 7 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!

                          • Profile picture of Leah Leilani
                            Leah Leilani replied 4 years, 7 months ago

                            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]

                            • Profile picture of Rameshan
                              Rameshan replied 3 years, 9 months ago
                              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

                                • Profile picture of Becky
                                  Becky replied 3 years, 3 months ago
                                  USA
                                    • Profile picture of Becky
                                      Becky replied 3 years, 3 months 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]

                                      • Profile picture of Danielle "Dani" Liptak
                                        Danielle "Dani" Liptak replied 3 years, 3 months ago

                                        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?

                                      • Profile picture of Becky
                                        Becky replied 3 years, 3 months 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.
                                          • Profile picture of Danielle "Dani" Liptak
                                            Danielle "Dani" Liptak replied 3 years, 3 months ago

                                            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!

                                        • Profile picture of Rameshan
                                          Rameshan replied 3 years, 3 months ago
                                          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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