[Tim Thurston]

My friend with ALS limb onset is now having increased breathing difficulties, uses TRILOGY at night and some daytime.  Most recent FVC is 57% which prompts the conversation of gastrostomy tube.  He is also losing weight.  He has a lot of difficulty coming to grips with the decision to have a feeding tube, saying he does not now need it, understanding that surgical risks increase greatly with FVC <50%.  As walking becomes more of a challenge, now uses rollator, thoughts of motored devices are not yet pallatable.  The struggle with “giving up” to motorized devices or “tubes” is so difficult.  He already has made the decision for no trach, but these interim decision are the tough ones now.