Living with Duchenne (age 18+)


Living with Duchenne (age 18+)

Members: 63
Latest Activity: Nov 13, 2019


DMD young men in Cincinnati, southwestern Ohio

Started by Rebecca Lilley. Last reply by Ann Dillon Jan 2, 2018. 2 Replies

Mental Wellness Resources for DMD?

Started by Emily Wiebe Aug 26, 2017. 0 Replies

Undiagnosed Pain

Started by Kathy Guthy. Last reply by Ian Conner Jun 27, 2011. 3 Replies

Comment Wall


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Comment by Claire Albertson on August 27, 2008 at 9:18pm
Thanks for your posting Susan. We just got the comfort cushion and he likes it better than the other 2 nasal interfaces we tried. I am putting this on him at 6 in the morning and taking it off when he gets up at 9 am. It is hard to turn him and keep the fit on his nose. I guess we are making progress. Still working toward him sleeping with the bi-pap through the night.
Comment by Susan Robertson on August 27, 2008 at 8:58pm
Both my Sons 22 and 18 use a bi-pap at night and my 18 year old uses it alot during day also, I can identify with you, Heidi Miller, my 22 year old is so particular about his mask and he has to use his at night no matter what too, and I have lost my patience with him sometimes, I feel terrible when I do lose my patience, since I know he can't fix it the way he wants it. My 18 year does great with his mask, they both use nose pillows and love them and we don't have any skin breakdown as of yet.
Comment by Claire Albertson on August 6, 2008 at 1:46pm
I agree about the difficulty with the bi-pap masks. My son is 20 and has just started using a Bi-Pap at night. He is using the mask thing that covers the nose because he can't tolerate the pillow that goes in the nostrils. It takes forever to get the thing on just right and then he can only tolerate having it on for about 2 hours because he gets claustrophobic. The respiratory doctor says we can take out time adjusting but I don't see that we are making any progress.
Comment by Tanya Fleming on July 8, 2008 at 10:21am
I think the problem that my son and I had with the bipap is that his nose kept breaking down. So we found a thing called stoma to put on his nose at night and it helped with the breakdown, but you couldn't take it off everyday, it was meant to stay on for a couple of days. If you take it off everyday it could cause more breakdown. He got a trach at 17 and then we had other issues after that.
Comment by Heidi Miller on June 24, 2008 at 1:14am
Anyone out there dealing with the tremendous difficulty of using a BiPAP? My son, 23, uses BiPAP every night...He has no use of his amrs/hands and relies solely on my help to put the mask on and adjust it. Trust me when I say we have can take a lot of time with minute adjustments. You need a lot of patience for this and I sometimes lose it. Am I the only one out there that has this problem? I don't have anyone else to help me...I am Mitch's primary caregiver and there is no other spouse to help us. Mitch can no longer sleep without the BiPAP so we can't simply say lets skip it for the night. This is embarrassing, I realize that, but if anyone out there has this problem, please open up to me!
Comment by Valerie Drushella on June 6, 2008 at 11:59am
To all college students or parents of college students. Could you please share your stories regarding the transition to college life. Was it difficult? What things did you do to make it easier. Was it hard to make new friends?

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