Daughter. Spouse. Friend. Advocate. Unexpectedly retired Episcopal priest.
Living with dementia.
Years ago, at the height of a busy career when my mother, Winne,was still alive, I voiced to colleagues that in my retirement I hoped to advocate for improved quality of life for those living with dementia, not realizing how soon my "family inheritance" would unexpectedly place me at the center of this public health crisis.
On Election Day in November of 2016 I was diagnosed with early stage Frontotemporal Degeneration (FTD), a progressive disease that results in damage to the temporal and/or frontal lobes of the brain.
Am I frightened of this disease? Sure. I’m afraid of becoming a burden to my wife, Emily, and when I allow myself to go there, I’m afraid of not being able to live and die with dignity. However, my prayer right now is to have a clean heart and a right spirit so that I might live and die with grace. Interestingly, that’s been my daily morning prayer for a long time, and now it’s even more important to my well-being and to those around me.
While we acknowledge that I have dementia, Emily and I no longer consider it a terminal disease with a countdown clock. We now think of it as a chronic illness that we can and will manage to the best of our ability for as long as we are able. Moreover, we are determined to craft a rich and full life with it — all the way to the end. I am among the "lucky ones" with a strong marriage and support system, financial security, health insurance, and access to the best health care system in the world — unlike millions of other American families struggling with this disease and its devastating financial impact.
On October 13th, 2018 as the honorary chair of the Cleveland Walk to End Alzheimer's, I will be walking for my mom and for those I've loved and those I've lost. I am also walking for the other 5 million Americans who are currently living with dementia. By 2050 this number could rise as high as 16 million.
It's time to destigmatize memory impairment and speak up for early diagnosis and compassionate care, knowing that our current health care system and communities are completely unprepared for the trajectory of this disease. Thank you for joining me in making this the best walk ever!
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