I had my monthly drug trial follow-up this week, which ended up being a much longer appointment then normal. First, I've had issues with my voice the last couple of weeks. It's been hoarse and goes in and out like I was a teen-age boy. My doctor is almost certain that my voice is okay but it is the lack of oxygen causing the issue. He is referring me to a specialist at Banner for evaluation to confirm his diagnosis. After listening to my breath through the stethoscope, he said that my breathing was shallow and had me do the FVC test. The last time I did it I blew a 63%, which was in the Jan/Feb time frame, but I am now at 35%. So, I now have earned more bi-pap time :). He also is ordering a cough assist machine. I will also need to wear a special vest that jingles my insides in order for the cough machine to be effective. Both of these are targeted at preventing pneamonia. I also got an order for a neck brace which I have needed for some time but have been putting off.

One really interesting thing is that this has been the second month in a row that my reflexes have improved. I'm the fourth patient they've seen on this trial with this improvement. It is pretty certain that I am not a placebo group because nothing else would cause the improvement. :) I did tell my doctor that I didnt't really care about my reflexes, I want to be able to walk and breath! :) It will be exciting though if this information can end up helping better understand ALS and/or ultimately result in a cure, even if it is too late to help me.