-
Do you celebrate ALS-related anniversaries?
I have several ALS dates I celebrate. I was unofficially diagnosed on December 2, 2022, through participating in research. I had a swift decline the following spring, was finally able to get into the ALS clinic, and was officially diagnosed on May 19, 2023.
I started QALSody on July 12, 2023. My breathing had declined significantly, and I likely only had a few months left. Thanks to the treatment, my breathing has improved by over 20%. (I have my next test on June 6th, and I’m hoping for more gains.)
Each year, I celebrate December 2nd because I’m still here, I’m still happy, and I’m still participating in research. It’s like a birthday to me! I know that I am fortunate to be a candidate for QALSody, and that it is having a significantly positive impact on my body. I understand most pALS aren’t a candidate for QALSody.
Are there dates related to your ALS that you embrace or celebrate? If so, what does your celebration include?
-
1 Reply
-
Actually, I don’t, now. I used to mark my date of diagnosis – in the initial years. But I’ve come to realize that it was an arbitrary date, more significant for insurance purposes than marking my health. My symptoms appeared much earlier… and who wants to celebrate that? Nowadays, I set goal dates – such as my clinic visit or a family gathering. I plan, prepare for it, and then celebrate a successful event. I look forward… not backward.
Log in to reply.