Tracy Hancock, an MG patient advocate, shares how “controlled” symptoms still shape daily limitations, from fatigue and mobility challenges to changes in eating and communication.
Transcript
I think controlled does not mean cured. So for me, I still fatigue a lot with walking. I can’t walk very far.
I got maybe a thousand steps in me a day. I can’t wash my own hair because I can’t keep my arms up for too long.
I’m talking very well today, which is great, but I lose my voice often and then I struggle to breathe. I choke a lot and I get tired chewing. OK, so I’ve kind of switched to a liquid diet.
And I’m at the moment I’m considered, like, way more controlled than I was a couple of months ago. My symptoms are “under control.” I’m not in hospital every month anymore, but I’m still, like, very much disabled. I really cannot continue living like I was before.
