the MSA page
aka: where it all began, with me caregiving for my mom, who died from MSA in 2016.
This is (technically “was,” but, really always “is”) my mom. Gorgeous, right? Yeah. I know. In 2015, when my husband and I moved back into the house where I grew up, we never imagined she would be gone in 6 months. This is from a photo shoot we did a few months after moving in.
MSA stands for multiple system atrophy, and it’s this really rare, really awful disease, kind of like Parkinson’s except it gets worse over time and most people eventually die from it.
The MSA community found my website helpful when I first created it, and I’m grateful I could share my experiences at a time when not many people were. Rare diseases can make you feel like you’re all alone, because most of your friends and family have never heard of them, and a lot of your doctors may not have either.
If you’re navigating this difficult journey, as a patient or as a loved one, I wish you so SO much love and peace, and I strongly encourage you to connect with one of the MSA groups online, or through Facebook. Those groups were essential for me in building a network of support.
Thanks for stopping by here, and I hope this site helps you feel a little less alone too.
