The moment any of us are diagnosed with a long term terminal illness, palliative “living” care should begin…and that is exactly what we should call it, although it needs to be geared towards the early “diers”. (Which by the way....we are all early "diers") Palliative care should not be just a last minute effort that does little more than organize living wills and prescribe pain meds. I need guidance to accomplish my best most full life, before the disease is over powering and I have no option but to sit down and rest. I do not want to “conserve” energy I want to wisely use every single bit of it up. Give me the resources to be comfortable and as active as possible, do NOT keep telling me to sit down and rest. Sit down and rest…for what?
"And Your Bird Can Sing" The Beatles