My mother was diagnosed with multiple system atrophy in the summer of 2017. I have really appreciated the support network MSA Coalition offers in the “onboarding phase” of MSA. I have attended the last three in-person Patient & Family Conferences in Nashville, San Francisco, and Orlando.
Given that my mother lives in Maine and I live in the DC metro area, my relationship as caregiver may be unique. My siblings and I have “spread the wealth” in taking care of the business – one takes on “moving to single level housing,” another takes on doctors’ appointments in Boston, and I took on “fun committee.” It is always important to enjoy life, but even more important to cherish the fun times once diagnosed with such a crappy disease like MSA.