Every day, I go through so many thought cycles. I think, “Well, my speech seems a little better, and I’m choking less, so maybe it’s actually kind of working!” Then I had to start using my walker full-time because my coordination became so poor. I tell myself, “Well, I guess it isn’t working, because I am still progressing.” Then, I ask myself, “Do you think it has lessened progression, as in I might have delayed the walker by a month or two? And if I hadn’t been on the trial, maybe I would have started using the walker in November instead of January.” I have all of these thoughts, plus many more, and there’s a 50 percent chance I’m not even on the treatment! It’s emotional, to say the least.
At the end of the day, I am glad I am participating. Yes, it’s a lot. But I know that at the very least, I am providing scientists with valuable data on FA progression. I am happy to do my part as a “lab rat” in the hopes that we, as a community, are that much closer to a cure.