The current state-of-the-art treatment for ALS involves multi-disciplinary clinics. In theory these are wonderful. The patient and family members meet with a team of specialists every three months - the neurologist, physical therapist, pulmonologist, social workers, etc. It is honestly a great concept. But “treatment” for ALS is very different from other diseases.
I naively expected an all-hands-on-deck approach. Where does he stand? What do the metrics tell us? What interventions does he need? Come on people, let’s get this problem solved!
Jeremy had his second clinic visit today. The emphasis is clearer now. How does he feel? What does he need? That’s pretty much it.
Metrics are not particularly helpful, though family members (especially control freaks like me) would like to have them. Therapies are apt to just exhaust the patient. Ditto for extensive testing.
The focus is on Jeremy, which is where it needs to be. He is a terrible patient in many ways - stubbornly continuing to work and refusing to use the fancy machines that will expand his lungs and suction out gunky stuff and “assist” his breathing. But if we are all on Team Jeremy, I suppose we need to let him lead the way.
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