Marie, is Petey on a vent now? Email me with info. I only know one person on a vent, but he isn't full time. He has this neat little portable vent that can...
Marie, my son has a Pulmonetics LTV800 portable vent. He has an external three hour battery (which only lasts about two hours) and a nine hour battery. We...
JoyceGlass@...
Dec 4, 2006 4:00 pm
19251
Adele, Petey is on a vent and it¹s small, like a laptop but in his new chair, the batteries sit in the under-department of the chair and must be charged every...
Marie, it sounds like his 9 hour battery is somehow attached to the chair. My son's battery is not attached and he is able to put the small one in his ...
JoyceGlass@...
Dec 4, 2006 5:15 pm
19254
Thanks, Joyce, I¹ll let you know what I come up with. Marie ... Re: [MD-List] Batteries Thanks, Joyce, Ill let you know what I come up with. Marie On 12/4/06...
Every Monday night you can chat with others with mitochondrial myopathy on www.mdausa.org You have to register in order to enter chat. It takes a day or more...
Do you have a physical disability??? such as spina bifida,cp,,ms from birth or later in your life? There a group that has been around for almost four years and...
A couple of years ago I was invited to join the DMD treatments group. At the time I did not take you up on the offer. I have had some success with treating my...
Just joined the site looking for some answers. I got the ebv last year and things went ok. Swollen nodes in neck but that is it. My CPK test was also high 1300...
Well Chris, I would stick with the doctors to get a final diagnosis. Most of us here have children with Duchenne Muscular Dystrophy. Their CPK levels are...
Chris, these symptome could be any number of things. If you can you need to go to a specialist for MD. They will know the proper tests to give to get you a...
Hi Everyone......I mainly sit back and read all your messages and I want to thank you all and wish and pray that we beat this thing..... Anyways, I was...
Hi Rhonda- This is George's website http://www.uni-potsdam.de/u/germanistik/ls_dgs/gs/dmd/: if it's on the web, I think it's listed here somewhere!!! I also...
Hi, Back in 1996 my son was diagnosed a growth hormone deficiency and it was not recommended to treat it. The theory back then was that it would speed up the...
I'm thinking you might need to see a rheumatologist as well as neurologist - high CPK and nodules can occur in a condition called polyarteritis nodosa for...
I'm so new to all of this... but I am in love with a wonderful man. We met several months ago online, and are now discussing the rest of our lives together....
Kate, I'm just a little confused. Your do not have a disability, but the man you are in love with does? I hope I have that right and if so, don't be worried...
... just follow your heart. i was a caregiver for my wife for the last 3 years and i told her when we got married that in sickness and in health i took care of...
The ventilator is nothing more than a fancy computer controlled fan or air pump that forces air into his lungs. When breathing muscles are weak one can not...
I just wanted to let all of my MD friends know that the 2007 PPMD Legistrative conference in D.C. is scheduled for Feb 11-13. This year, more than ever, you...
Thank you for your concern.... I'm sure that my motives are correct; I see only the man I love, and understand that he is not his illness. My questions stem...
Hi Kate, I think that is wonderful that you are in love and moving to be with your man. Try not to be intimidated by all of the technology. It doesn't take...
Hi, I would love to get some advice on getting a wheelchair for my 17 month old girl who has Congenital MMD. Right now Kayla is able to get around slowly by...
Hello Kate  Welcome! I¹ve forwarded your email to my son and his girlfriend. She just moved here from CA to be with him (and he has MD, on a vent, etc). I...
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