Old Dog has a good perspective here. After fiddling around with local neurologists for quite a while, we got Dad to University of Michigan for a workup -- his initial diagnosis was motor neuron disease that appeared to be PLS. Dad hung onto that diagnosis like a life raft, even as the disease progressed and began showing lower motor neuron involvement. His disease progression was quite slow, and Baclofen probably helped the most at keeping symptoms controlled.
I work in health care, and 'rule-in' / 'rule out' diagnosis can be crazy-making. You have distinct symptoms, and with a good provider you will be able to determine what drugs/therapies/interventions work best to control those at any given time. What prompted my post above, is that inconsistency is the one consistent thing about this disease. Dad would be be trucking along just fine, hit a rough patch, and find that he had permanently lost some capability in the span of a few days. This is what informs my comment about waiting to adapt before 'needing to'. Dad's brother and grandfather also had ALS, and their symptoms progressed markedly different than my father's.