Vince,
Once you have breathing support & a wheelchair and your tube is in, not much need to go to clinic unless it helps. We stopped going a couple of years before Larry died, but since we did our own BiPAP and he never had a tube, could've stopped easily after he got his PWC a year before that. And ours was a short walk. While I respect what clinics want/try to do, I respect P/CALS' rights more, to round the bases best they can.
As for false hopes, I can't help but think anything with five layers of cake is spinning the wheel, but that's me.
But there are clearcut healthy things to do. For example, most commercial formulas for your tube-to-be are liquid junk food. Use a real food formula or better yet real food. Stabilizing inflammation and oxidative stress seemingly has little down side as long as you take interactions into account. Optimizing vitamin D, which is often low in immobility, is desirable. Etc.
I agree with your subtext, which is that the last thing you want to do is spend your final quality years chasing hypothetical rainbows when you want to spend your time looking at the real deal. So to shake off the clinic blues, get some fresh air in a far nicer context in the near future.
--Laurie
