Thursday was the first intravenous infusion of the brand new ALS drug. They are done at home and for the most part, self administered. It entails a lot of steps, needles and a lot of time but not intolerable. If this were a short term treatment, I would say that it’s not too bad. Trouble is, it is supposed to continue indefinitely. The benefit: a small sample study in Japan, pointing to a one third slowing in progression. It was fast tracked to approval because any progress for the treatment of ALS thus far has been dismal. This is the first drug showing results in over 22 years.
ALS seems to be a grasping at straws kind of disease. Grasping at straws is something I very much did not want to do. Any slowing is nice, but it is not a cure.
The treatment has just started, but my fears seem to be justified. Mary and I have been living life fully and normally. We have been trying to give as little thought to the disease as possible. Just get on with life. Work hard at it and enjoy it. Introducing a daily schedule of IV hookups, flushes and dripping bags is a rude smack in the face. One that just put fear in our hearts. Now it feels like I’m a sick man. If I were just sitting around home all day, it wouldn’t be so bad, but I’m not! I am leaving today to visit a stepdaughter at Notre Dame and see a football game in the rain. Then a trip to West Virginia for a family Thanksgiving get together. A vacation with brothers is in the works. My getting around is challenging enough, adding daily infusions and worrying about I.V. lines is a buzz kill. I’ll be damned if I’m going to sit at home by myself so that my life is extended slightly. I’m afraid that focusing on these things could make one start to give up on normal life. We’re not mental supermen.
On the other hand, There is some hope in my mind that this will be even more effective for me than it was in the study. So much guess work. So little information.