Updated: Apr 27, 2020
So, yesterday I finally made it to the ALS doctor here in San Antonio. My appointment was at 10am, it ended at 5:30pm! My first appointment was with the ALS Doc, Dr. Jackson. She did a number of physical tests and told me my right arm and leg were "slightly" compromised. More on that later. I then saw a Research nurse, Pam Kittrell. She gave me some good information on installing a port for an infusion medicine that I had rejected the first time I heard of it. I had a conception that the port could be dislodged by accident and wanted nothing to do with that as I am an active sleeper. But facts provided by Nurse Kittrell and pictures she showed me proved that my fears were groundless. I am still hoping to get in a new trial of this medicine testing a pill but agreed to sign up for the installation of port as a back up option if I don't get into the trial. Then I met with a Respirator Therapy Nurse, Rick Herrera. My lung capacity was at a 71, normal is 80 or higher. Interesting fact, once my score drops below a 50, medicare will pay for a oxygen assist device. I also saw a Psychiatrist, Dietitian, Speech Therapist, ALS Association Rep and Discharge Nurse. The only other one worth updating you on is the Physical Therapy nurses, two of them. The did a series of base line strength tests and confirmed the right side was very slightly weaker than my left side. My hand grip strength was 71.3 in my left hand and 70.0 in my right. Still normal but the decline has started. But I was told that about 20% of Bulbar onset patients with my readings can last up to ten years. So getting the baseline test yesterday will give me some idea after the next set of tests in a few months what path I am on, the long and winding road or the short cut!
Sorry for the long post!