Journal Entry Sixteen
Clinic
On Monday Julie and I went to the ALS Clinic at Providence. As we’d expected, it was not a good afternoon.
As I have mentioned before, the clinic at Providence involves meeting my neurologist, a nutritionist, physical therapist, occupational therapist, a speech therapist, respiratory technician, an augmentative communication specialist, and a social worker.
The two most important meetings are with my neurologist and with the respiratory technician.
The respiratory technician comes up with several measurements; the most important being forced vital capacity. (Other patients call the respiratory tech The Breathing Nazi because of the aggravation we go through to give lung capacity measurements.) In effect, the resulting numbers measure the progress of the disease. From December of 2006 to yesterday my forced vital capacity numbers (100 is normal) have been 105, 95, 75, 75, 63, and 24. A number as low as 24 means that I could die at any time.
Monday was our first visit with hospice, too. There’s no way to describe how we felt after that.
The neurologist had visited prior to the respiratory tech. She came in again after the end of the meetings. She told us that she did not believe that 24 was correct, as there had been some irregularities with the process used to measure my lung capacity. There are also some practical reasons to believe that the prognosis caused by the 24 is too severe: I still sleep at without discomfort and without the aid of machinery, I have no trouble swallowing, and my weight has stayed constant.
Julie and I agree in principle with neurologist but are still terribly shaken up.
We took a drive yesterday to the Siletz River. It was a beautiful day, and we enjoyed beautiful scenery.
For me, long drives together are part of saying good-bye.
