I remember the first thing I said when I got my ALS diagnosis. Earlier the doctor had said he would be wanting to do more tests, but after the EMG he said it wouldn't be necessary. "These readings indicate that you do have ALS." He started to say something else, but I interrupted him. I said, "Wait, you're saying I have ALS?" and he repeated, "That's what these tests indicate." So I said, as though I was pointing out a flaw in his logic, "But that's a fatal disease."
He went on to explain that there is ongoing research, there are promising studies, etc, medicine is working on this problem and we shouldn't lose hope. But that had been my first reaction. ALS is a fatal disease. That was what filled my thoughts.
It took me quite a while to get an understanding of exactly how ALS leads to death. There is so much to learn at first, plus it was all so hard to accept and take in. My wife knows more about medicine than I do, and she said that she understood that eventually the breathing fails. But I couldn't understand how that would kill you. Couldn't you use an iron lung or something? That's what I actually thought of, an iron lung. I was born before the polio vaccine and that was a common image back in those days, paralyzed polio victims in iron lungs. My wife could only say that she didn't think that was an option for ALS.
Even as I learned more and got active on the forum, I still didn't understand how Joel and some other people could say that they didn't see ALS as a fatal disease. I thought it was just positive thinking. But when I read Joel's web pages and some other material, it felt like getting my life back. ALS really does not have to be fatal. I felt for the first time that there was real hope. I had bulbar onset and you often hear that life expectancy is worse with that, but now I could imagine a possible future.
I understand that this solution may not work for everyone, and certainly there are no guarantees in life even if you do make use of all that medical technology has to offer. Survival on a trach is sometimes said to be "indefinite" but that doesn't mean infinite. Everyone's time will come, but at least you don't have that feeling of a countdown ticking away your remaining days. And of course there are major quality of life issues, but for me the mere fact of immobility isn't as horrifying as it might be for others.
My wife is totally supportive of this idea. She has seized on it even more than I have. We still have to work out the practicalities but we have some ideas and hopefully as we learn more we will be able to make a plan.
I do want to thank Joel again. Ever since I learned the (literal) "facts of life" about ALS, it has given me a new perspective on the disease. I would be the last person to tell other people what they should do, but for me and my wife, if it is at all possible, we are going to do all we can to extend my life.
