So says Dr. David Compton. But he didn’t always feel that way. In 2015 David was diagnosed with mild cognitive impairment (MCI), and he had to retire from his family practice because of an inability to keep up. His days then were too often filled with frustration, panic attacks, and depression. (MCI is an early form of dementia that carries the risk of turning into Alzheimer’s.) When we first began talking in February 2016, David was still trying to adjust to this diagnosis; his volatile moods swung from depression to hope to denial and back.

He has since evolved into a confident, outspoken advocate. At this stage David, now 65, is what I would call a ‘soft-hearted curmudgeon.’ He describes himself differently: “I don’t have time for BS, and neither do the people in my support group.”

“I’m not depressed today. I’m just mad. I’m mad at the disease. I’m mad at the stigma surrounding it. And I’m mad at how many physicians disregard the disease’s impact on the patient and their family!”

“No longer do I buy into the word ‘dementia,’ he flatly states. “Other doctors and researchers still may, but I don’t. It means ‘going mad’ in Latin…and that’s just too much to lay on a person.” (To honor David and his position, I’ll avoid this word where possible in the rest of this post.)

After our first conversation, David’s been willing to update his status every year since that time (in April 2017 and May 2018 and now). I’ve done this for two reasons: First, he’s the only doctor I know living with a cognitive impairment who’s capable of observing himself, his condition, and his environment with a clinical mindset, and who’s open to talking about it publicly. Secondly, we grew up in the same small town of Cookeville, TN, though nine years apart. His older sister Susan and my younger sister Alice were good friends.

Just Do It
Another of David’s mantras is, “Don’t just talk about it. Do it!” And doing it he is. In earlier posts we discussed his personal regimen for trying to keep at bay the onset of symptoms associated with MCI. If curious, you can find his regimen and the reasoning behind it in this post. He’s retained much of it, yet some has changed; more on that later.

In the past 18 months, David has expanded his fight from primarily helping himself to also helping others with cognitive impairments. He’s helping personally and politically.

Last spring, for example, he traveled four times from Knoxville to lobby legislators in Nashville to establish what’s now called ‘The Tennessee Alzheimer’s and Related Dementias Advisory Council.’ David was selected as one of 13 persons to sit on this board. He’s the sole individual designated with a cognitive impairment; being a doctor is an added plus for the board. The council has until this January to develop a plan that (1) identifies barriers to the care of Alzheimer’s disease; (2) analyzes the effectiveness of services; and (3) includes recommendations, metrics, and best practices to address gaps in service.

*The Advocate with Tennessee Lt. Gov. Randy McNally*

Tennessee is a bit late to the task at hand. It suffers the country’s fourth highest annual death rate from Alzheimer’s—52.4 persons per 100,000, or 3,522 deaths, according to the Alzheimer’s Association 2019 Facts and Figures document. It trails only Vermont (59.3 deaths per 100,000), Mississippi (54.5 deaths), and Alabama (52.6 deaths).

“It’s important to be passionate about what you’re doing,” says David. “It helps me to stay focused. A commitment to something greater than myself is energizing.”

“But I really have to watch myself and not over-do it. I can’t do multiple things any more, and that still frustrates me. I must stay within my schedule’s structure. Otherwise, stress really messes up my thinking.”

While searching for a way to open our conversation, David’s voice was halting as though he were looking for the right words. But as soon as we landed on his passions, his voice changed dramatically. He became confident, clear, and emphatic.

Gathering Support
Close to David’s heart is the support group he and an elder care attorney started last year for themselves, and then subsequently opened to others living with early-stage cognitive issues. “It just began with Monica Franklin and me talking over coffee and bagels.”

But the group quickly grew to 25 people who are living with mild or early stage cognitive impairment. “We meet weekly in three different locations in greater Knoxville,” Monica Franklin says. “Ours is a diverse group of people who share their experiences and insights about living with cognitive impairment. And as we share with each other, we feel understood, accepted, and ‘normal.’” Their group is called “Sharing Experiences Together,” or S.E.T. for short.

S.E.T. is based on a model designed by Dementia Alliance International, according to Monica. “David and I are the guiding force and we provide oversight for the groups. We maintain control of who facilitates the group, where they meet, and the day and time. And we provide training for newer facilitators.”

Caregivers are not included in these meetings except for an occasional invitation, and each group is limited to nine or so to permit full participation by all.

“This is an organization now,” Monica says, “and while we think and hope this concept will spread, we want to develop processes and procedures to ensure that when a group calls itself a ‘S.E.T. group’, we know that they are operating with the compassion and skill necessary for everyone to have a positive experience.”

“Stimulation from this support group is dramatic,” says David. “Some folks have joined us who were just sitting at home worrying and withering away. Now they are getting re-engaged as they talk and listen to others with comparable problems and potential solutions.”

More than one care partner has told David and Monica something to this effect: This group is the best thing to happen to my husband or wife.

PLEASE NOTE: While S.E.T is limited to East Tennessee, if you reside elsewhere and have a neurocognitive impairment, David and Monica say you may reach out to them by email if you’re interested in learning more: info@SharingExperiencesTogether.org.

What I hear David getting at today is this: He is determined not to buy into the fatalistic outlook so often associated with Alzheimer’s and other cognitive diseases. He would like to see a cocktail of cures yesterday but the physician in him knows that may be a while yet. However, the stigmas associated with such cognitive impairments are another matter. They need to be abolished immediately, he says—from those attitudes held by the most highly trained professional to the friend and neighbor next door.

“I push back hard if anyone tells me I’m going to get worse. I call BS.”

David pushes back not only for himself but for all those tagged with the disease. These stigmas are hurtful emotionally, yet equally important, he says, they have delayed the pace of research.

This conversation is the most emphatic I’ve ever heard David.

“The clock is ticking. There needs to be a national sense of utmost urgency. We need to diagnose these diseases much earlier and treat them with the same intensity that we do cancer, diabetes, and heart disease.”

David continues to relish two favorite hobbies…photography and cooking.

On a different front, I asked David what his weekly routine looks like now. Here’s his quick rundown:

Monday is his Alzheimer’s day. “Our weekly S.E.T. group meets.”
Tuesday is usually open. “But I’ve been surprised—I’m suddenly getting asked to speak to groups.”
“Wednesday I go to a S.E.T. group in nearby Oak Ridge to help it get underway. I also attend an Al-Anon group for help with cognitive issues.”
Thursday he attends a lecture with the Oak Ridge Institute of Continued Learning. The current lecture is on racism. “These are the smartest people I’ve ever met.” (Many are active or retired scientists and engineers, nuclear or otherwise.)
“Friday varies; it’s often personal time.”

David also works out 5-6 days a week for an hour or more. That’s replaced his hiking, which arthritis brought to a halt. “I also stopped going to the urban kitchen a day a week—I can’t do everything.”

David continues to see his gerontologist twice a year and his clinical therapist every four to six weeks. His wife Andrea, a practicing nurse, and the therapist help David set up his regimen, and then they help him stick to it.

Ever defiant, David leaves with this parting shot: “This disease has picked the wrong person. I do not plan on getting worse!”

Thank you, David. Your story and life continue to be inspirational and instructive for many, not only for those living with a cognitive impairment but also their caregivers and friends. And thank you, too, Monica, for your insights.

Until next time,
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1 As usual, feel free to forward this post to your friends and family. They might appreciate it. Dr. David Compton and Monica Franklin are sharing a lot of good insights and information here.
PS2 September is World Alzheimer’s Month. Why not commemorate it by buying a sheet of the Alzheimer’s first-class stamps at 65 cents a stamp? The net proceeds go to the National Institutes of Health for Alzheimer’s research. As of August, 7.3-million stamps have been sold, raising $971,000. Join me and thousands of others to Help Stamp Out Alzheimer’s.

PS3 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with this disease. My high-energy wife Martha was 50 when diagnosed; I was 52. Our children were still in high school and college. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.