Yes, Mike has DMD. He is my "significant other." We share a home. Mike works from home and manages our household while I work in the community as a nurse. He uses BiPAP at night from about 8:30 or 9 PM to about 7 AM. During the day he uses an LTV 800 vent intermittently. Thankfully, Mike is free from cardiac complications with a normal echo this year! Our major problem over the past couple of years has been swallowing-- thus the risk of aspiration. He opted for a j-tube which is placed a bit lower in the GI track than a g-tube. It has worked out well and he can still eat and drink. Mike also received a service monkey from Helping Hand: Monkey Helpers for the Disabled last November. We are "proud parents" of an 8 lb capuchin monkey. We love to travel and have all sorts of adventures. Feel free to ask any questions.
Having difficulty applying BiPAP or having difficulty tolerating BiPAP are not unusual. It sounds like Mitch may benefit from trying a different type of interface. Mike is 40 years and has been using BiPAP at night for a very long time. We would be happy to share our experiences.
I can only imagine how difficult it is to do all of Mitch's care on your own and just want you to know that even though it has been difficult for you you have done a wonderful job! Mitch is a wonderful young man and you have raised him well. I am going to pass your information on to a friend of mine who not only is taking care of her 25 year old son on her own but is very well versed on bipap and sip vents. I'll email her your email address if that is ok with you and I know she will be more than willing to talk to you on the phone if you'd like. Just let me know.