About my medical help

I've written about how my diagnosis was executed (interesting word) quickly and with aplomb. In a matter of days, I knew exactly what was wrong with me. No doubt. My sombrero is lifted to the efficiency of my doctors' clinical determinations.
Now, let's talk about follow up. I was diagnosed with ALS on March 15 of this year. Three weeks later I visited the Illinois Neurological Institute on Randolph in Peoria, which apparently houses the local MDA something or other. ALS sufferers number too few to have their own group, so we are lumped into the MDA under the presumed category (I'm just guessing here) of Misc. Neuro. These are good people. The staff consists of social workers, nutritionists, occupational therapists, physical therapists and a host of "ists" I can't remember. In early April, we (Amy, Nick, Gus and yours truly) participated in a "meet and greet" with most of them. They came in, explained their specialty, left some pamphlets on wheel chairs, breathing apparatus, feeding gizmos and various illuminations of defeat and despair . They upset Amy more than me because I thought they were all full of shit. I mean, all I had was a twitchy arm! Gimme a break! Not me.
Well, now, near September, things are a little less deniable. I might need advice from a physical therapist so I put in the call.
I need to emphasize that after my April get together I was set up for a visit on Aug 16 or so. That visit has been put back to mid November. I was told the doctor had over booked. Good thing I don't have a rapidly advancing, incurable neurological disorder that eats muscle tissue and destroys motor neurons!
I have had exactly 3 conversations with an INI nurse since April. One to get in contact with my staff MDA nutritionist, who is excited to have me as her first ALS patient, the second to find out my Aug. appointment had to be scrapped due to a scheduling conflict, and third to request a meeting with the staff MDA physical therapist, who probably has as much experience with ALS patients as my nutritionist. Oh boy. Can't wait. I'll probably hobble in and crawl out.
All this just to tell you what? If I had complained about every little twitch, I might've had an audience more often, but I've figured it all out on my on. They want to help, but they can't. They will address my disabilities as they manifest, but they really don't want to hear from me, they really don't want to see me and they certainly don't want to field my questions because they haven't a clue or a reply. They are only there to provide me with devices of mobility, respiration and digestion as my body weakens. That's all good and fine, but the bulk of their consolation is equivalent to a pat on the back and a sad smile.
So I take what I need and I steer clear of the INI unless I have a problem they can solve. Don't misunderstand, I think the people at the institute are great. They care about all their patients. They just can't fix them. Or me. So I fix myself, dammit!