Sheryl Marrazzo explains why tracking baseline measurements, medications, symptoms, and health trends has become an important part of managing her son’s Duchenne muscular dystrophy and advocating for his care.
Transcript
It’s really important to understand what baselines are. “What is your baseline blood pressure? What is your baseline pulse? What are some numbers that when they draw blood will be unusual, but that are normal within your disease?”
So a lot of folks that I know, they have binders and things like that, but that’s not really my jam. I kind of like to have something on my phone so that if in my doctor’s office, I can just pull it up.
So I do a couple of things. I use a Google document sheet, and what I can do with that is I’ve been tracking my son’s blood pressure for three years. Also, I do include when medications started, when medications stopped. Inevitably, if you get involved in a clinical trial or if you are going to your just normal clinic, they will ask you those questions. “When did you start this? When did you stop that?”
I also can note symptoms. So maybe the blood pressure was this today. There was some dizziness. There was some heavy chest feelings. So it just gives you a really good idea.
I’m sure I’m not the only caregiver that does this, but I also send graphs to our specialists and I say, “OK, he started this then. He started that then. We started this then.” And you could see the plots. What I’m tracking for the ejection fraction, you could see sort of where it’s going, but you can also see when a medication was added — changed, a clinical trial started. “Right?”
So I think it’s important to do that to keep everything day to day and something that’s you can easily access.
Also, if you use your healthcare organization’s MyChart system, you have everything on there as well and they can be shared among your caretakers.
