Submitted by Sarah Parker Foster
I am talking with you about this now because I want to be frank and open about what is going on and you are old enough to understand and think about the big picture.
This chart shows my CAG number, which is 40. It also shows the median age of onset. That’s around the time when the physical symptoms might start getting worse. If you see here, I am only three years away from the lower number in the range shown.
I want to delay that onset for as long as I can. I am doing things like taking medicine and exercising, to help possibly postpone onset.
Something else that influences my symptoms is stress. I am making an effort to reduce the stress in my life.
Here’s how you can help: You have been and will be faced with certain decisions and we will have interactions where you can opt to take the path that will be the least stressful for me.
In the process, you’re doing yourself a favor by making choices that will help support your successful transition into adulthood.
You are in no way responsible for my symptoms. They will come on eventually. But I know you may have asked yourself if there was anything you could do, given the unfortunate nature of my diagnosis. Taking care of yourself by making good decisions is the best way you can support me.
I felt that I needed to say that.
I love you.