Hi Lori, and welcome. I'm Adele and my son Jason is 20 and has Duchenne MD. Do you know what type of MD you have? WE live in Maryland. Adele _____ From:...
Sarah, yes, I think it is horrid that people will tell someone that. But I think they are saying these things out of ignorance. They can't see how someone...
Early cardiac screening necessary for muscular dystrophy patients Category: Muscular Dystrophy News Article Date: 30 Oct 2005 Early diagnosis and treatment of...
Thanks for posting this! Dr.Towbin is my son's cardiologist and he told me about this article coming out. So you saved me having to go get it lol. Candice ... ...
I have always fended for my son, We do not even have a social worker. I did every thing for him and still do. I demanded that the schools change, they said...
********Highlights the need for medical coordination and social support Analysis of an adult Duchenne muscular dystrophy population A.E. Parker1, S.A. Robb2,...
Boy, do they have this one right. The support of medical and social agency's, is very important for our kids well being and their life. Adele ... From:...
I can't imaging anyone would tell their child that. There are many active people in wheelchairs, it just depends on the person. You make life yourself what you...
I don't think parents concentrate on their childrens limitations, children have to take some reasponsibility for their self. You can't teach a person how to...
Hello, You don't thing people can be taught to "fend for themselves?" Can't self advocacy skills be taught? Can't we support our children as they transition...
Bob, you would be amazed at what Arlene - and Arlene's son - have accomplished. ... From: MD-List@yahoogroups.com on behalf of Bob Smith Sent: Tue 11/1/2005...
I don't question Arlene's accomplishments. I'm confident that she is very committed to her son. However, my point concerns self advocacy and allowing...
Excuse me but don't you think for my son to be alive with DMD at age 37 and not on a vent, I have done my best to keep him alive, with excellent care. He has...
I think the important part to remember, is to let our sons be as independent as they want to be. It's important to teach your child how to advocate for ...
Thanks for sharing Holly. One of my biggest fears is my own depression affecting my children, as there are studies on this topic. Of course, how does one...
Joanne, I know what you mean about depression - but I call it grief. Grief is losing something specific - in this case the loss of parts of my child's life and...
Chris, it is not only the funding, there is a good article in the Quest magazine this month about people living alone. The problem is the nurses and aids...
Marie, Yes, the grief is always below the surface. So when other things happen, it turns to depression more easily. I don't have the stamina I thought I...
i hear you Joanne - i hear you. Marie ________________________________ From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Joanne...
Arlene, please don't leave the list. I learn so much from you and your son and you both encourage me though I don't say much. It is families like yours on...
Yes hello to all I am the mom of a 5 year little boy named Juan and we found out two years ago he has Duchenne Musclar Distrophy and wehn we did it just broke...
Hello, I want to apologize for bringing family issues to this forum. As with all families sometimes we have our disagreements. But they should be resolved...
It is stressful dealing with the government. It gets under my skin when I see people taking advantage of government funding, yet people who really need it has...
It sure feels good to be able to come to my computer and read how others express, much better than I could, exactly how I'm feeling. Thank you Joanne, Marie...
Hello, I'm Adele. My son Jason is now 20 and has DMD. Where do you guys live? I'm in Maryland. If walking is getting hard, you might want to consider a...
Mom's camp - I like that! Marie ________________________________ From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Mel, Johanna, Ian...
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