Pma
Dear Lucy,
I too am in my sixth year with PMA. To date all issues have been with my legs (now using a powered wheelchair) and I truly count my blessings for the slow progress of this disease.
Most everything posted for you here is true, especially about the fact that things progress so differently for each individual. However, there seems to be a bit of confusion over what “lower motor neuron involvement” entails (or I may be reading something wrong here). Unfortunately, having PMA doesn’t let us off of the hook for eventually having loss of neurons (lower only) and muscle that covers the legs, arms, torso, and/or head (speech and swallowing), but fortunately this typically happens over a much longer course of time than ALS. The lack of upper motor neuron involvement simply means that we don’t suffer the effects of spasticity, brisk reflexes, or display the Babibski sign (there is detailed information on all of this in the PMA section of this website). Having said all of this, the real kick in the pants is that we still have at least a 50/50 chance of picking up the upper motor neuron symptoms (PMA-> ALS) in the future.
I apologize to everyone for being so technical (and anal) about this stuff, but the whole upper/lower motor neuron, upper/lower body convolution appears to happen quite often (it took me a long time to get this straight myself).
God bless!
Edwin