ALS Assocation

I understand TH'S frustration with the medical community on the ALS treatment front. I was diagnosed with ALS (they are almost positive) beginning of 2022. Bulbar onset was supposed to be a quick demise for me but here I am one year later. I have a science bioscience and chemistry background and at 68 have been in great health til this. I have been asking about physical activity and the limitations I should practice to keep the muscle that I have as long as possible. I get conflicting responses but all tell me that I should " know when I am doing too much" . Of course if I cannot get the muscle to respond I am doing too much. But ...how much is too much if the body is still willing and able? I lost the use of my right ankle before I realized that I could possibly keep the use longer if I insist on stretches and physical therapy. My pt says to just do what makes me happy but does not offer any therapy.
I got afo for ankles but now they are over taxing my large thigh muscles, The orthotics man I went to made sure I have the correct foot size orthotic but did not address the potential for other muscle fatigue or loss when using the afo. I think that I am going to have to make the management of my ALS symptoms a research project. Fortunately there are lots of people interested also and Google (don’t really want to go down the rabbit hole) but my medical experts are not in tune with what this disease can do and not willing to try and understand each individuals nuances in the patient’s health care. OUPS I went on too much. Thanks for those out there who care to respond.