Voices From The Community: Winning the Lottery in Reverse
by Dave Baldridge
Last year, I unceremoniously collided with the greatest irony of my ongoing 30-year career/mission as an Indian elder advocate. The day before my 74th birthday, the director of a local cognitive assessment center called me into her office to explain her unexpected diagnosis of PSP—progressive nuclear palsy. It’s a terminal neurological disease, loosely related to Parkinson’s or Huntington disease.
Overall, it's kind of like winning the lottery in reverse—it affects only five out 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 (Ruh Roh!). At the time of the diagnosis, I felt a bit overwhelmed by the irony. IA2 is among the first Native organizations to engage in national work to recognize and cope with ADRD, and then earned the CDC grant that now brings our prestigious Advisory Group together.
Symptoms also include imbalance (I was/am having plenty of that). This has been a long time in the making--a formerly-avid bicyclist, l remember, on a guided mountain bike adventure in Nepal 18 years ago, inexplicably losing my balance and falling off of a steep cliffside trail. There were other incidents.
“Even though it’s progressive,” she explained, “you’ve probably got 8-10 good years left.” So here I sit, a year into this new adventure, internally questioning 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? Jeez!
The doubts are constant and troubling. They’ve led me to take closer control of my options—re-financing my house, exploring in-home care, should it become necessary, and updating my will and advance directives.
Interestingly, my personal circumstances haven’t seemingly affected my work with ADRD. I’m very appreciative for being able to continue to contribute to our ongoing efforts to help American Indians and Alaska Natives to address ADRD within their communities and families. The issue is top-of-the-ladder for many of my generation and will become even more central as time progresses. Our mission is important.
I’m keenly aware that many of you—my colleagues and friends—have and continue to experience far greater health issues and difficulties than me. I admire your courage and dedication to our work together.
And I’m constantly reminded that many of the folks we serve—Indian elders—face far greater obstacles than I ever have.
I’m convinced that the best solution for me—perhaps for all of us—is actually pretty simple--to stay positive and to keep trying. So, I’ll offer up my best to you, and to Indian elders, as we continue our important work together.
Advisory Group Feature
For our inaugural E-news issue, we are honored to feature, a member of the Navajo Nation and part of our Executive Committee and national Advisory Group on Brain Health, Larry Curley.
Larry has over 40 years of experience working in the aging and healthcare fields, most recently as the Executive Director for the National Indian Council on Aging. He has worked with Congress, other branches of government, and national organizations on aging to develop support for programs affecting elder American Indians.
We asked Larry what inspired him to join the Advisory Committee and devote his time and energy to support the American Indian and Alaska Native Resource Center for Brain Health, and he said:
"Having worked for tribal governments (big and small), I have seen the conditions that exist in Indian communities. In juxtaposition to these conditions, I have seen the data on the impact of Alzheimer's Disease and related dementias on Indian tribes, communities, and families as they deal with this disease. But, there are ways that we can lessen the impact and even delay the onset ...click to read the full article
Each month, our newsletter highlights one of the American Indian and Alaska Native Resource Center for Brain Health's Advisory Group members.
Dementia Capability in Indian Country—Current Efforts and a NEW Funding Opportunity for Tribes
Amber Hoon, the Tribal Dementia Program Director at Great Lakes Inter-Tribal Council, talks about her efforts to improve dementia capability working with six tribal communities with funding from the Administration for Community Living's (ACL's) Alzheimer's Disease Program Initiative tribal grant program.
Hoon’s project plan includes training, education, and support for five tribal dementia capability specialists (DCS) and other tribal aging service staff to provide direct services including implementation of Savvy Caregiver for Indian Country.
Each month, the Resource Center highlights a promising practice on brain health from Indian country and Alaska Native communities. Michael Splaine, Executive Committee and Advisory Group Member, is lead contributor
This E-news is supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $348,711 with 95 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an an endorsement, by CDC/HHS, or the U.S. Government.