Hi, Nikki. They drew blood yesterday for the C9 gene. Thanks for the great explanation of it. So, sounds like we should be hoping for it to show up, so we can participate in a gene-blocking study? I wonder if having it would make Michael's brothers more likely to get ALS. Or their kids. Not sure. His cousin had it, but we have been told that isn't a close enough relative to be of statistical significance.
Alana, thanks so much for sharing your story and your feelings and your kindness. Michael has been telling me about someone in Long Beach he's been corresponding with on the forums who recently got diagnosed. I wonder if he meant your husband. It gives me great comfort knowing you are close. I would love to meet up at some point, if you are up for it. It is so wonderful to be around people who really, truly know how you feel. By the way, I have been to a support group a couple of times, and found it very, very helpful. It is at the Veteran's Center (near UCLA) on the second Saturday of each month. And it is just for caregiver's, so we can speak candidly. (Not that we ever say anything that our loved ones wouldn't want to hear, to be honest.) It was because of advice I got there that we switched from UCLA to Cedars. They are a very informed group.
Andrea