Had my three month (or 3000 miles) appointment at the ALS Clinic at UCSF yesterday. While the one-stop shop model is super convenient for seeing the entire team of doctor and specialists, it does make for an extremely long day being cooped up in a relatively tiny examination room for three-and-a-half hours.
They came in one by one, ready willing and able to answer all of our questions. In order, we saw the respiratory therapist, the MDA representative, the social worker, the speech therapist, the nutritionist, the physical therapist, and the neurologist. The nurse and the occupational therapist were not in-clinic.
Usually we have at least one question of immensely monumental significance — as well as a series of follow-ups — to ask the team and yesterday was no exception. When should I think about getting a tracheotomy? Is it a common procedure amongst ALSers? Is this even something that I would want to get done?
Our queries were answered with the clarity of years upon years of experience and expertise. I was forced to confront my fear of using the Bi-Pap machine by my own neurologist who, along with Fehmeen, was able to spell out in terms that were abundantly clear to even a dense and stubborn emmeffer such as me that I either learn to love it or die not trying. (At least that was the message I took home).
As I headed out the door and down the freeway towards our weekend in the city of St Chuck, I am filled with a thousand thoughts of decisions that need to be made before my next 3000 mile neurological oil change.