Abstract
A person with primary progressive multiple sclerosis manages a complex scheme of personal assistance services to remain living at home.
Highlights
multiple sclerosis (MS) is incurable: Nothing could have prevented or slowed my progressive disability
Well-being, and even survival depend on my personal care assistants
My story here traces four major epochs of my personal care needs, with each tipping point precipitated by functional declines that gave me no choice but to adapt
Summary
I am sixty-four years old and have had primary progressive multiple sclerosis (MS) for twenty-two years—nearly a third of my life. I require personal assistance services nearly twenty-four hours a day, seven days a week. Well-being, and even survival depend on my personal care assistants (my caregivers). The hours I spend each week organizing my services are well worth it, but I’ve faced significant challenges making this work. The major care decisions I’ve had to make over the years have involved personal assistance services, and each decision has had critical consequences for my quality of life, safety, and longevity. My story here traces four major epochs of my personal care needs, with each tipping point precipitated by functional declines that gave me no choice but to adapt
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