Bill Lyon has Alzheimer’s disease. I ought to know. I’m the guy in the white coat.
Three and a half years ago, Lyon, his wife and his daughter-in-law came to see me at the Penn Memory Center in Philadelphia. For about a year, he’d been frustrated finding words, could become easily confused and had gotten lost while driving familiar routes. Once, he mixed up the remote control with the portable telephone.
Over the last five weeks, this Philadelphia Inquirer sports columnist emeritus has written about his diagnosis. Some readers may wonder, “Does this guy really have Alzheimer’s?” Someone with this disease isn’t supposed to be able to write a column using complicated technologies like a computer, teach a creative-writing class and carry on vividly aware of his condition – aware of not just his cognitive and functional problems, but also what lies ahead.
Yes, some patients with mild-stage Alzheimer’s dementia do have impairments in their abilities to remember new information and make plans that are so intense that they can’t do what Lyon is doing. His cognitive problems are different, but let me assure you, he has Alzheimer’s disease.
His greatest problem is making sense of a visual image, what he calls depth perception and what I call “visual spatial function”. He also has problems taking in new information, organising it and planning, or what I call “executive function”.
His scores on memory tests? They’re pretty good.
But don’t ask him to draw the face of a clock to show it’s 10 of 2. He’ll hand the clipboard to you, frown at his messy image and shake his head. “Not gonna happen, Doc.”
These cognitive impairments, as well as the results of neuro-imaging and a history of troubles with activities like working through a mortgage refinance and driving, are why I diagnosed him with Alzheimer’s disease.
He has what my colleagues and I call one of the “atypical forms” of Alzheimer’s. I put this in quotes because the more we study patients with Alzheimer’s, the more we find it’s not one but many diseases.
As Lyon would say, Al is having fun with us.
The job for my colleagues and me is to discover the tests and drugs that will diagnose and treat these many diseases. Lyon’s job is to live well in Al’s house, knowing that he’s unlikely to benefit from one of these discoveries.
No disease is pleasant. That’s the nature of disease. To be a patient is to suffer. And Alzheimer’s is uniquely unpleasant because it relentlessly chips away at a person’s capacities to live according to a cherished ethic – the freedom to choose. In other words, to live autonomously.
So how does he do it? Here’s my take:
What makes the answer to this question so compelling is that he’s doing this even as he’s entirely aware of his symptoms. Some would rather die than live that way. Lyon shows it’s possible to be aware and to live well.
Many patients don’t perceive that they have significant cognitive problems or know what lies ahead. Some observers think this ignorance is a form of bliss, though family members will tell you it usually adds to the strain of coming up with a plan to live well. They even have to practice “loving deceptions”.
“I feel like a child,” he once told me. “Stigma,” I thought, and I prescribed sertraline to treat this anxiety and frustration with his symptoms.
Technology has helped, too. His cellphone has an app that shows his family where he is.
Even more effective than the drugs and the apps is the world he made for himself.
All brains live in a world. My philosophy colleagues call the brain-world connection the mind.
I first met Lyon’s world at his new patient assessment. The whole family includes not only his wife, but his children, their partners, grandchildren, a great-grandson and a dog. They all live close by. Next door, even. But of course, a sportswriter knows it takes a team to win.
That team decided to face up to the problem and take action.
They came to a memory centre, a place that has the time, space and expertise to talk to him and his family, test his cognition and order and interpret brain imaging. After I made the diagnosis, he and his family met with a health educator who taught them how to manage his cognitive and functional problems, how to plan for the future, what to watch out for. That last part of the world he made – meeting with the health educator – has been shown to delay the time to moving to a nursing home by as long as one year, and yet, Medicare doesn’t pay for it.
In March, when I last saw him and his family at the Penn Memory Center, he told me: “I’m taking a philosophical approach to this disease. I know it can’t be beat, but we can try.”
It makes sense that a sportswriter understands this disease. Life gives us a set of rules, you choose your team, you play the game and, as you do, even after a few championship seasons, you know sometime it’ll be time to hang it up.
But along the way you have a heck of a lot of fun. Or as he told me: “I’ve had a pretty good run.”
Bill Lyon is my patient. Bill Lyon is my hero.
*Jason Karlawish is a professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania and co-director of the Penn Memory Center
Dr Jason Karlawish, left, co-director of the Hospital of the University of Pennsylvania’s Memory Center, talking to Philadelphia Inquirer sports columnist Bill Lyon.