Jason Karlawish, MD, director of the University of Pennsylvania’s Neurodegenerative Disease Ethics and Policy Program and associate director of the Penn Memory Center, speaks with Toni Hamilton about her diagnosis of Mild Cognitive Impairment and what it means to her.
Editor’s Note: Antonia Hamilton, 74, died in February 2015, “having determined not to see her advancing Alzheimer’s through to its end,” per her obituary. “She ended her life with the same grace and courage by which she lived.”
Toni Hamilton was diagnosed with Mild Cognitive Impairment in 2010.
“I would sit out there for long periods and look for miles over the marshlands which stretched to the horizon … I often wonder if I would be dealing with this the way I do if I hadn’t had that experience.”
As we exited her Philadelphia townhouse to take pictures, Toni Hamilton closed the door behind her. With a click, the latch engaged and off we walked.
I snapped a few pictures of Toni tending to her window boxes and walking along the leafy urban street, just a few blocks from the Schuylkill River trail where she often walks 15 miles a week. Photo shoot over, we climbed the steps to her front door and said our goodbyes. She reached to open the door. It was locked. She had forgotten to take her keys.
Toni Hamilton, 73, visited the Penn Memory Center (PMC) in Philadelphia in 2010 with the idea of being a Normal Control in the PMC National Alzheimer’s Coordinating Center (NACC) study. Upon exam, however, she was found to have impaired performance in some of her memory scores. Soon after, she was diagnosed with Mild Cognitive Impairment (MCI).
Forgetting to take your keys when you leave the house, not remembering the names of friends or children, losing your train of thought while speaking, searching for a word – these are some of the symptoms associated with the diagnosis of Mild Cognitive Impairment. And these are some of the daily occurrences that Toni has contended with as a person living with MCI.
MCI describes a noticeable change in cognitive functioning that is not severe enough to impair day-to-day function. A person with MCI is at an increased risk of developing dementia due to Alzheimer’s disease or another form of dementia, but some people with MCI never get worse. Some even get better.
Patients like Toni have found ways to cope with the anxiety of knowing they are experiencing memory loss. Having a positive outlook, joining a support group, exercising regularly, challenging your brain – all can be helpful tools for dealing with the symptoms and stressors of MCI.
Using the past to make sense of the present
Toni’s life has been a rich amalgam of experiences, and as she says, a thread of good fortune weaves through it all. A graduate of Smith College with a degree in art history, she received a master’s degree in library science from the University of Michigan, with a focus on early and rare books. She has held a variety of jobs through the years, everything from selling real estate, to writing a column for an Iowa newspaper, to being director of corporate and foundation development for the University of Iowa.
But a defining experience in her life, and one that she finds has helped her maintain her positive outlook through divorce, relocation and now, memory loss, was the month she spent living in a tree when she turned 40.
Off the coast of Savannah, Georgia is Ossabaw Island, a forested home to a variety of wildlife including wild pigs, snakes and alligators, and at one time, an artist’s retreat where Toni spent one month in 1980, living in a tree.
The tree house, with a creek running under it, had a balcony made of three boards. “I would sit out there for long periods and look for miles over the marshlands which stretched to the horizon. Looking back, I was, informally, meditating. It was fabulous, and I think it changed me. I often wonder if I would be dealing with this stuff the way I do if I hadn’t had that experience.”
Later, Toni would take a Mindfulness Meditation course at the University of Pennsylvania, and now she meditates daily.
“A very good friend of mine says ‘Don’t run uphill to meet the rain.’ And that’s a very good thing for me to remember.” – Toni Hamilton
Knowing the truth and being set free
Toni notes the irony in how she has reacted to the realization of cognitive impairment. “I am fairly constantly aware of it (the memory impairment). My husband says I have many multiple degrees in worrying – I’m good at worrying – I was born worried,” she says with a touch of humor.
“But what astounds me is … I don’t worry (about this). I don’t really fret about it. How can I be content with being cognitively impaired?” she asks. “If I didn’t have the support of family, friends, and the PMC, I don’t think I could live with this challenge.”
Learning to “live with it” to Toni means no sugarcoating of the facts. “The truth is very important to me. I really want to know what’s going on, what’s right and what’s wrong, and not be patted on the back by someone saying to me ‘you seem perfectly normal.’ Because no matter how I seem, I’m not (normal).”
She is anxious about one thing. “I’m terrified of not knowing when changes occur. I asked Dr. Arnold, ‘If I inevitably slip into Alzheimer’s disease, will I know that?’ He told me some people do, some people don’t. I didn’t like the answer, but at least I know.
A very good friend of mine says, ‘Don’t run uphill to meet the rain.’ And that’s a very good thing for me to remember.”