Hello, and welcome to the forum. It sounds like you have seen Dr. Calder, and yes she is great. I would be happy to email you or call, if you give me your phone number, as I have an excellent long distance plan. Is your home wheelchair accessible? Tim was diagnosed 1-½ years ago, at 52 and is a partial quadriplegic now, but no problems with dementia. He does not have bulbar involvement, but has breathing compromise as his diaphragm is not working well. He uses a bipap at night and is able to use a sip & puff ventilator during the day. The sip & puff is not something that Dr. Calder, or our local RT was aware of, but my husband is an American Veteran so we have access to things not available in Canada. We are very mobile, and our home is very wheelchair friendly, as we just built it after Tim's diagnosis. If there is anything that we can help you with please feel free to ask.
Paulette