Like most of you, I have some special people in my life who have been diagnosed in recent years with Alzheimer’s Disease, a form of dementia. The disease progresses relentlessly, forcing significant life changes upon patients and family members struggling to care for their loved ones. As I walk with them in their journeys, I have often been reminded of the melancholy and dreadfully apt title of Nancy Reagan’s book, “The Long Goodbye”, a tribute she wrote about the gradual loss of her husband, President Reagan, to Alzheimer’s.
To date there is no known cure; medications are few but research is ongoing. I attended one of the most optimistic Alzheimer’s conferences here in Indy in May that described hundreds of ongoing research studies that underline the promise that a day will come when there will be an Alzheimer’s survivor. I took a great deal of hope away from that conference and it affirmed my commitment to continue donating time, talent and treasure to that cause.
But I wanted to do more; to do something concrete and useful that would have a measurable impact. I recalled that when my Dad was diagnosed with Parkinson’s Disease 30 years ago, he was offered the chance to take part in clinical trial of L-Dopa, a new drug that looked promising in those days. He readily volunteered, but, sadly, the trial proved that the drug had only limited effectiveness. Still, he was content that he had contributed to that conclusion, regardless of the outcome.
That memory likely contributed to my decision to subscribe to an online newsletter called the Brain Health Registry (www.brainhealthregistry.org). Late last year, I read with great interest the following announcement: “The Alzheimer’s Disease Neuroimaging Initiative (ADNI) is the long-running, National Institutes of Health-supported study investigating brain and fluid biomarkers of the disease. It has entered a new phase of discovery with the launch of ADNI3.
This historic study of brain aging provides researchers throughout the world access to ADNI data with the belief that open source research is the best way to approach Alzheimer’s. We need everyone working together. Researchers can only do this with the help of volunteers. ADNI is seeking people over age 55, who are healthy, as well as those with mild memory problems and those who have been diagnosed with mild dementia due to Alzheimer’s disease. No experimental medication will be involved. Contact your local study site, Indiana University.”
I followed that suggestion, made that contact, and was accepted into the study! I have been placed in a cohort group referred to as “High functioning.” I have already had my first series of memory tests, some initial blood tests, and I anticipate this week having a PET scan for Tau, one of the proteins that is a biomarker of the disease. Next week, I will have a second PET scan for Amyloid, another protein of the known biomarkers, and a spinal fluid analysis. (They take out 1.5 tablespoons of fluid which is replaced by the body within 2 hours.)
It feels great to be doing something positive and meaningful. I feel like I am part of a unique community of people committed to a research effort that will help build greater understanding of the disease, and perhaps lead to finding a way to prevent it, or treat it. One of the outcomes for me already is an end of life decision to donate my brain, after I die, to I.U. I have always planned to be cremated and I have been an organ donor for years, so it felt natural to give my brain to them. Besides, I am confident that they will have already gotten to know it pretty well during the study!
When I go to my appointments, I think of my Dad, and of my friend’s spouse who was diagnosed a few years ago, and of another family member whose father has dementia. When I pull into the parking garage next to the Neuroscience Building, I offer up an intention that the greatest good will be served that day, and I say silently to them, “I love you; this is for you.”
Footnote: If you have an interest in getting involved, the ADNI3 study team is seeking more volunteer study participants. Here’s the contact information: Christina Brown at 317-963-7426 and her email is firstname.lastname@example.org.
If you want to learn more about the wide range of ongoing general brain research studies, go here: www.brainhealthregistry.org