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 Deb Robins on February 10, 2009 at 5:37am
Gregory, not very scientific but on the very rare occasions, my 21 yr old likes a heat pack. We used to microwave a herbal pack, but now we have this gel one with a metal disc in it and bending the disc makes the liquid heat up. I suspect that some of my son's discomfort comes from his ongoing gall bladder problem which the surgeon feels he is too risky a candidate, even though he still has borderline lung function & no bi-pap yet. He likes the idea of losing weight by watching what he eats and he is succeeding. But I think he overdoes it occasionally going out with mates even if he doesn't drink much - his body just can't cope the same with sitting up half the night and it shows for a few days afterwards. Should I have a talk with his friends alone?
Comment by Katherine M. Reynoldson on January 29, 2009 at 7:28pm
For Gregory,
I left a message on your page regarding some ideas for your hip/lower back pain :-)
Comment by Laurie Barton on January 28, 2009 at 9:07am
My sons are 33 & 30. Both have differing amounts of hip and lower back pain; and the amount varies. They both say WHO puts them in bed makes a difference. Each of us position them a little differently...not something either of us were aware of until one of the guys mentioned it. Also, we use 2 or 3 pillows. We know when we get it right when they sleep longer (often thru the night) and are not uncomfortable when they wake up. We also have a wake-up routine. My son knows at this point if he needs, for example, to spend another 10 min on his side with a pillow pushed under his side to relieve the discomfort...or if he needs to be more on his back with his legs supported with more pillow;: some are triangular shaped, neck rolls. The younger son is weaker and needs to be repositioned more often, but pillows make a difference. This is different than the firmness/softness of the bed.
Hope this helps, Laurie
Comment by Cheryl Markey on January 27, 2009 at 11:50pm
I would like to say it is an inspiration to all me to see your look so full of life there with ( is that your son in the picture with you ) the young boy in the picture. My son who is 23 yrs. old, complains very rarely of any hip or lower back pain, so, I personnally can't reply to yoour question.
I hope all as been well with you and your love ones going into this new week!
Comment by Gregory on January 26, 2009 at 4:22pm
Does anyone get hip and lower back pain? If so, how do you get relief from the pain. I am 38 with dmd.

Comment by Heidi Miller on January 26, 2009 at 1:20pm
Daniells and all who responded: Thanks so much for all the wonderful and helpful words of wisdom. Unfortunately, many medical things have occurred since I wrote in this section...Mitch is now trached and on a vent full-time since August. He aspirated and had to be intubated. NO MORE BiPAP!!! Trust me, I owuld settle for BiPAP any day, and with all your help and support, we can do anything! Again, thanks to everyone for the help! Heidi
Comment by Danielle on December 29, 2008 at 9:47am
p.s we used to take a long time adjusting the straps, and one thing we noticed was that frankie would be more fussy at certain times than others. We think that, although it was about comfort, it was also about control. He didn't have control over much and so he wanted to have the mask just right to the millimeter. Frankie would sometimes be really fussy with food, and whilst that was about tastes and textures, there's very little he can control in his life, and so the things he could control, he clung onto. It can be frustrating, especially when it's 'move the mask up, no move it down, up, down, up, down' but I used to just put aside half an hour and instead of trying to get him to bed, I'd think in my head, right now time for nippy adjustments (in the same way that I allowed enough time to go to the toilet). It's a need, just like any other, but it's just a matter of knowing it's there and making time for it. The thing I found difficult was that you'd just do one move and then have to undo it, redo it, and it makes you feel like you're not really helping, but if you look at it slightly differently, and instead of being about how comfy you can make him, look at it like 'how happy can you make him' and patience might be the key to that. Obviously it's about comfort, but it's also about their control, and it's finding a balance between the two. I wanted frankie to feel in complete control of the tiny things he could do, even if that meant doing the same movement lots of times, it's an emotional need as well as a physical one.

Does that make sense?
Comment by Danielle on December 29, 2008 at 9:36am
oooh, my brother had a great way of calling during the night. If he wiggled his chin, the mask would let in air and cause a leak, and so it would alarm. That would call us and wake us up. So basically instead of calling our names, he'd wiggle his chin! You can also get switches that your boy could hold in the night and press to raise an alarm which would call you. You can get so many different types of switches, some with varying pressure like these ones:

Hope that helps
Comment by Dee on September 13, 2008 at 9:18pm
Valerie: My son now attends University of Florida-you can read about our adventure on my blog. Its a lot of work...but we are there.

As far as the Bi-pap w/ the other mom's...the only issue Tim has with the bipap is "communications". I don't always hear him and we trying different communications methods. What do you do if they need you during the night?
Comment by Katherine M. Reynoldson on August 28, 2008 at 4:48pm
My son also uses non-invasive nocturnal ventillation. He is 22 years old and has been using a VPAP at night for several years. We also struggle with leakage at times, along with his chin strap slipping. When we were first introducing the mask and VPAP we put it on while my son was still awake and watching TV or otherwise distracted as a means to ease him in to using it. From there we gradully continued increasing the amount of time he wore it until he was able to tolerate it all night long. Now he definitely would not go to bed without it.
As far as the leakage issue, my son uses a nasal mask interface, he did not like the nasal pillows. When I or my son notice that he has leakage I adjust the velcro strapps until he says the leaking has stopped. We do this shortly after putting on the mask while he is still settling in for the night. When I roll him I adjust his head by lifting it gently, this seems keep the straps in place better than if I slide his head forward on the pillow. Sometimes I gently lift the mask by the three sides, wiggle a little then put back on his face. The straps stretch out over time so we periodically adjust the velcro and then replace the mask as often as our insurance provider allows.
Fortunately, we have not had any skin breakdown issues with his VPAP system. My son is currently transitioning to a Bipap system with AVAPS features to support him at night.
Your respiratory therapist may also have some tricks he could share with you. If not, I think our RT would be more than happy to talk/email you. He has been a presenter at several PPMD conferences and is a great guy. He and our Pulmonologist in Seattle also do alot with non-invasive day time ventilation when DMD/Becker young men need that type of support as well. They advocate a sip and puff set-up as opposed to a trach whenever possible and have actully gotten trach'd men onto a sip and puff system which definitely improves quality of life issues.

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