Tomswife- Our ALS Clinic experience has been wonderful. Calls are answered in 2 days, and emails are within hours. At all visits, we can see each specialist or decline if we don't feel the need. Our specialists are one step ahead of our questions, yet don't overwhelm us with what is to come. "It's time to consider PEG. If you opt for this, there are 3 appointments, and you may go to the first without commitment. Therefore, if you think you may be interested, I'd recommend you schedule the first appt. as they take a while to get."
If I were you, I'd start going up the chain of command to get the wheelchair order. Maybe a friend or relative could take this on? You and your PALS deserve a better experience than you are having, and you certainly don't need this added stress.