@cmiddletown71
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Cynthia Barrett replied to the topic Welcoming MD New Today’s New Columnist, Andy Rusch in the forum Adults With Muscular Dystrophy 1 year, 1 month ago
thanks for writing!! My son is now 46. At 27 he had an heart attack. Very scary but his doc saved him!! He was in a facility at the time and had delayed care! By the time I got there he was very ill and I called ambulance right away. Doc in ER was right on it. Now with meds and ICD in his chest things are going well. He’s had it there for 10 ye…[Read more]
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Cynthia Barrett replied to the topic Welcoming MD New Today’s New Columnist, Andy Rusch in the forum Adults With Muscular Dystrophy 1 year, 1 month ago
Nice to hear from you. My son has interests in many things. He’s a bit shy and reserved. I think if you wrote to him he would be thrilled. He’s feeling down lately and his Covid immunization has left him with terrible vertigo and he can’t even watch tv now too well.
If u feel comfortable and you have time message me and I’ll put you in touch w…[Read more] -
Cynthia Barrett replied to the topic Welcoming MD New Today’s New Columnist, Andy Rusch in the forum Adults With Muscular Dystrophy 1 year, 2 months ago
My son is 46 with Becker’s and it’s been a difficult journey. He’s been in power chair for 18 years now. He needs full care and must be fed now.
although this disease is difficult he embraces all the little things in life more than most of us!! He is awesome, smart, and great sense of humor. Andy it would be great if you two could hook up!! -
Cynthia Barrett started the topic How Moderna shot effected me in the forum Coronavirus (COVID-19) and MD 1 year, 3 months ago
Since having shot 3 weeks ago my jaw has effected my mouth. I also got hit with TMJ!! I have Becker’s Dystrophy and have been in power chair for 20 years. I’m getting weaker and am now 46 but this shot has sent me back. Covid has made me scared as we know any respiratory infection would be a serious issue. Emotional trauma is difficult to deal…[Read more]
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Cynthia Barrett posted a new activity comment 1 year, 7 months ago
It’s so nice to hear from you! My son was diagnosed with
Becker’s MD when he was 8. He is now 45 and his disease is progressing but his heart is growing larger everyday with determination to keep going!! He’s so smart and special!! He keeps me sane most days!! He needs almost total care but he expresses his needs if needed. I’m 71 and…[Read more]-
Hi Cynthia, your fear is valid, and I know it is a concern for many family members as their loved one’s age. Something my parents did for me was meet with a disability lawyer and set some things up that would protect me once they pass. I hope never to need to go into a care facility as I have heard horror stories about them. A lot of my fear is…[Read more]
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Cynthia, I understand why you’re going through since my parents are older as well and their health isn’t what it used to be. My parents did the same as Dani’s and spoke with a lawyer to set up a Special Needs Trust to secure my future should something happen to my parents. My parents house (which I live in) and my wheelchair accessible van h…
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Cynthia Barrett became a registered member 1 year, 7 months ago
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Welcome, Cynthia! My name is Dani Liptak. I am a forum moderator, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Let me know if there is a topic that you would like to discuss or if you have any…[Read more]
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Hi there Cynthia and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.
Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…
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It’s so nice to hear from you! My son was diagnosed with
Becker’s MD when he was 8. He is now 45 and his disease is progressing but his heart is growing larger everyday with determination to keep going!! He’s so smart and special!! He keeps me sane most days!! He needs almost total care but he expresses his needs if needed. I’m 71 and…-
Hi Cynthia, your fear is valid, and I know it is a concern for many family members as their loved one’s age. Something my parents did for me was meet with a disability lawyer and set some things up that would protect me once they pass. I hope never to need to go into a care facility as I have heard horror stories about them. A lot of my fear is…[Read more]
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Cynthia, I understand why you’re going through since my parents are older as well and their health isn’t what it used to be. My parents did the same as Dani’s and spoke with a lawyer to set up a Special Needs Trust to secure my future should something happen to my parents. My parents house (which I live in) and my wheelchair accessible van h…
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The vaccine has been rough one everyone, some more so than others. I hope that you are able to resume your old normal again very soon!