@beckywelch123
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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 months, 3 weeks 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]
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Becky posted a new activity comment 4 months, 2 weeks 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,…-
I agree about the toothpaste splatter! It is awful. I have noticed that doesn’t happen with the BLU which is very nice.
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Glendalee Deruiter and
Becky are now friends 4 months, 2 weeks ago -
Becky posted a new activity comment 4 months, 2 weeks 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.
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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.
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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,…
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I agree about the toothpaste splatter! It is awful. I have noticed that doesn’t happen with the BLU which is very nice.
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Becky posted a new activity comment 4 months, 2 weeks 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?
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It has been working well so far! I like it a lot more than holding the electric toothbrush with my weak arms.
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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.
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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,…
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I agree about the toothpaste splatter! It is awful. I have noticed that doesn’t happen with the BLU which is very nice.
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Becky replied to the topic July is Disability Pride Month in the forum Member Spotlight 4 months, 2 weeks 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]
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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!
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Becky posted a new activity comment 5 months, 3 weeks 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!
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Becky posted a new activity comment 5 months, 3 weeks 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…-
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.
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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!
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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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Becky posted a new activity comment 5 months, 3 weeks 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…
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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.
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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!
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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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Tari CK and
Becky are now friends 11 months, 1 week ago -
Becky replied to the topic Suggestions for clinical trials in the forum Clinical Trials 1 year 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.
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Becky posted an update 1 year, 9 months ago
Hi Leah. Nice to meet you. -
Becky posted an update 1 year, 9 months ago
Hi Dani. Nice to meet you!-
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!
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Becky changed their profile picture 1 year, 9 months ago
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Danielle "Dani" Liptak and
Becky are now friends 1 year, 9 months ago -
Becky became a registered member 1 year, 9 months ago
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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!
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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
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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…
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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.
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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!
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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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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.