Last year, I unceremoniously collided with the greatest irony of my ongoing 30-year mission as an Indigenous elder advocate.
Executive Director and Board Member, International Association for Indigenous Aging
The day before my 74th birthday, the director of a local cognitive assessment center called me into her office to explain my unexpected diagnosis of PSP — progressive supranuclear palsy. It’s a terminal neurological disease, loosely related to Parkinson’s or Huntington’s disease.
Overall, it’s kind of like winning the lottery in reverse — it affects only 5 of every 100,000 people. Causes are unknown but may include genetics, although there’s no verified link. It has to do with damaged tau proteins in the brain. A primary symptom is frequently the loss of executive function, an expression of dementia.
An ironic twist of fate
At the time of the progressive supranuclear palsy diagnosis, I felt a bit overwhelmed by the irony given my career. My doctor explained that, “Even though it’s progressive, you probably have 8 to 10 good years left.”
So here I sit, a year into this new adventure, pondering what “8-10 good years” means. Will I miss scheduled meetings? Lose my train of thought while presenting at a conference? Break my ankle while walking to the bathroom? Get lost while driving to an appointment? Become wheelchair dependent?
The doubts are constant and troubling. They’ve led me to take closer control of my options — refinancing my house; exploring in-home care, should it become necessary; and updating my will and advanced directives.
An important mission
Interestingly, my personal circumstances haven’t seemed to affect my work with Alzheimer’s disease and related dementias. I’m very appreciative for being able to continue to contribute to our ongoing efforts to help American Indians and Alaska Natives address Alzheimer’s disease and related dementias within their communities and families. The issue is top-of-the-ladder for many of my generation, and it will become even more central as time progresses.
The International Association for Indigenous Aging (IA2) is among the first Native organizations to engage in national work to recognize and cope with Alzheimer’s disease and related dementias (AD/ADRD) and has earned a Centers for Disease Control grant that now brings our prestigious advisory group together.
Our mission is important. I’m keenly aware that many of you — my colleagues and friends — have experienced and will continue to experience far greater health issues and difficulties than I. I admire your courage and dedication to our work together, and I’m constantly reminded that many of the folks we serve — Indigenous elders — face far greater obstacles than most of us ever have.
I’m convinced that the best solution for me — perhaps for all of us — is actually pretty simple: stay positive and keep trying. So, I’ll offer up my best to you, and to Indigenous elders, as we continue our important work together.