Hi Marie, That's great news! I hope you find out what's causing the continued fluid, but not having to worry about the heart should have eliminated some major...
Hi everyone, I wanted to let you know that the new issue of www.audacitymagazine.com is out. The disability of the month is Muscular Dystrophy, in honor of...
My name is Helen Baldwin, and I have re-joined the MD-List primarily to request a favor of those affected in some way by SMA (self, family member, friend,...
I can't wait to see this. Tracey <mistymorn@...> wrote: Subject: MARS Approaching Talk about a once in a lifetime opportunity! Never again in your (or my)...
Kevin, Everyone doesn't seem to have a problem with pain with curvature. My son at 36 isn't having a lot of pain. He does sit up in the wheel chair from 7 am...
I have a name for your memorial: Mon Ami Vargas (1976-1979). Her parents helped us found a parent support group in 1978 in El Paso, TX for parents of children...
ILuvMere@...
Aug 3, 2003 12:36 pm
10613
Hello, I have a ventilator that helps me breath through a tracheostoma. In the last months when I sleep, my mouth opens and the precious ventilator air comes...
I have the same problem with the bipap my mouth opens some nights. I tried a deluxe shaped chin strap but it was so uncomfortble I couldn't sleep with it. I...
Hope for MD.org Newsletter update! If you have not had the opportunity to visit the new web-site , we invite you to so today! We hope as you visit the site,...
I too have this exact problem. I couldn't keep my mouth shut with the cpap and had to go to the trach. I have a trach with a cuff, a Bivona, and at night I...
It wasn't a Cpap, but I ment a bipap in that last post. I was exactly like you are with your mask. I never could get a good seal because I couldn't keep my...
shwew! Glad you meant Bi-pap. I've heard that C-pap can kill MD patients. ... From: Kevin Phillips To: MD-List@yahoogroups.com Sent: Sunday, August 03, 2003...
I have no experience with that, but an idea. Perhaps a soft silk cover chin pad (maybe cut down a sleeping mask) with the elastic band attached on each end of...
... I use special non-allergetic skin-tape to tape my mouth shut (I get it from the pharmasist, it's from 3M). In my case, it's my lips that don't close...
Hi Adele, You are correct about making the house for my son and not about resale. We are still, however, hung up on the bathroom. The dimensions now are up...
Veerle, Thanks for this suggestion. Why do you want the TAN strip instead of the 3M strip ? I read the www.chin-up.com site and to me it seems the 3m tape is...
Kevin, The breathing volume has already been adjusted to allow for some leakage. The problem is that when the volume increases the pressure on tongue and mouth...
Joanne. My bathroom for Jason measures 8x8 and there is no room for a tub. We only have a roll in shower. I'm not sure how much a ceiling lift cost, but...
I put my fist under my chin to keep from drooling at night, the result of botched jaw surgery. Now I can't open or close fully. Simple but works pretty good....
You know tape would be handy if you could remove it with your mouth, if you needed to call for help. Kevin ... I use special non-allergetic skin-tape to tape...
My son who is 28 years old had pericarditis when he was about 13. He was in a lot of pain and very uncomfortable. He had to go to the intensive care unit of...
JoyceGlass@...
Aug 4, 2003 8:53 pm
10628
Hi Joyce. Wow! Petey's symptoms were nothing like your son's. How did he get pericarditis? We did see a cardiologist last week. His echocardiogram showed...
Can anyone tell me how to find out if I am a manifesting carrier? I know that I am a carrier for Duchenne muscular dystrophy, but I do not know what test to...
I could be totally off base here, but I was under the impression that a "manifesting carrier" was one that actually had (manifested) some to all of the same...
I don't know how he got it. I think it was caused by a virus. I thought he had the flu for several days. I don't think there is a standard treatment for ...
JoyceGlass@...
Aug 5, 2003 12:01 am
10632
Diana. There are no test for a Manifesting carrier as far as I am aware of. You would know if you were by being effected with the DMD to some degree or...
Hi, I am a manifesting carrier of DMD. You can have the same cpk test done as your son. As a carrier, those levels will also be higher. Mine have been, as...
... The 3M tape I have is just ordinary straight tape, it's not the one on the site. I have to tape it vertically over my mounth which isn't good for my lips....
Is anyone using the new Juven now that the dyes have been removed? We have been giving Davey creatine and today are going to begin the new Juven and am ...
