CBD Diaries: General Topics

My wife,  dx 2005, symptoms since around 2000, is confined to her water bed, wheel chair and a nice lounge chair basically 24 hours per day. At this point she is unable to do anything without assistance. S has all the "classic" symptoms but one of our greatest difficulties right now is trying to feed her because of the rigidity in her neck and head. The health care aides or myself have to hold up her head (almost pushing or bracing one arm against the arm of the wheel chair) in order to get a spoon into her mouth with the other hand. Once the food get into her mouth she does still chew and swallow (but must be constantly reminded). I am wonder if anyone has any suggestions on meds or braces that would help with the rigidity so we can raise her head in order to feed her. S does not want a feeding tube, so that is not an option as this progresses! Thanks, and keep up the good fight!

Responses:

Someone in our local support group used a soft cervical collar to help keep the head upright so that feeding was possible.We had a slightly different approach. We stopped using a spoon to feed. When we transitioned to either finger foods or fork-feeding, then the position of the head didn't matter so much. The people doing the feeding found that standing up was often easier.

There are wheelchairs that have neck braces attached. When we first bought my father's I felt it was such overkill with the neck brace and stabilizers on the back (so it doesn't tip during transfers). In his last year or 2 we needed every feature of comfort and safety it provided. Because of the neck rigidity, my father used one of those neck pillows during most of his illness for comfort and security...the bonus was that it also helped prop up his head within the neck brace.