Re: CJ & all-
I had my 3-month clinical visit today, and talked to the neuro about a trache and vent. She was very candid, I think, but I sensed that her response ... and other neuros? ... is based in part on the same thing that frightens the public about ALS: the thought of being immobile, unable to communicate ("sometimes, you even lose the ability to blink," she said), and dependent on others doing the necessary trache "housekeeping" to keep you alive. She said she has known patients who have died because a crisis happened in the venting, and the caregiver had gone out briefly.
My question was, can a patient choose to "un-vent" before they reach that final stage, and she said "yes, as long as they spell the conditions out in writing before undergoing the procedure." I still doubt that I will choose that, but I wanted more info, and was surprised at how personal the subject seemed to be to my neuro ... personal in a good way; she was warm and thoughtful, and it was not a rote dismissal.
Off topic: my visit went well. I was expecting my previous rapid decline in FVC to continue, but instead I have apparently stableized in the last three months. FVC went up from 36% to 45%. (She said, basically it's in the same range... there are always fluxuations.)
They had said they would recommend a right leg brace for me this time, but today said I don't need it yet. I can see my continuing decline, but I am so damned grateful to have not gone down more, I can't tell you. This is one of those days when you really thank your Higher Power for the capabilities and blessings you still have.
Although my FVC is in the range for hospice consideration, the neuro said I'm not physically in need of hospice care yet.
I asked about clinical trials, and there are two good ones coming up. One an antibiotic that requires daily shots starting this fall, and one of a "very promising" new drug that will start this winter. Don't know the details on either, but am on the waiting list for both. I may not qualify because of age, heart disease, or FVC, but I also agreed to donate my brain and spinal cord to ALS research (when I'm through with them), so one way or another, I hope I can contribute to a cure for this stinkin' monster.