My battle with Alzheimer's: Finding my way back

Bill Lyon and his doctor Jason Karlawish, codirector of the Penn Memory Center. Lyon shows “it’s possible to be aware and to live well,” his doctor says.

Fifth in a series.

When I was younger and insufferably full of myself, I got a kick out of watching old folks walk. I called it the Geezer Shuffle. It was like ice skating without the skates. Locomotion six tentative inches at a time, the speed limit of no concern.

And then one day I awoke to find myself in the throes of bladder urgency, propelling myself like a man trying to step safely through a minefield. And I swear I heard a familiar taunting voice: "Well, well, smart-ass, look who's doing the Geezer Shuffle now."

Al, of course. My nemesis, Alzheimer's

Remember: Resist. Persist. Never give in.

Watch your step

Before you can commence the Geezer Shuffle, you must get upright. My preferred method is grasping each armrest and rocking back and forth, flexing my knees, and after three or four accelerated rocking passes, preparing for launch and then catapulting myself. And if I've gained takeoff altitude, well done. If not, clear the runway and regroup. (Caution: Sudden bursts of exertion may result in the passing of gas.)

Once upright, the prudent move is to s-l-o-w-l-y gather yourself, survey what is in front of you, and straighten up, which leads us to perhaps the most important element of them all:

Balance.

For me, this is crucial because it involves all of the dangers for which we must be ever vigilant, namely:

Stairs.

Steps.

Rugs.

Escalators.

Anything else lying in ambush that can trip you up and send you sprawling. (See pets, toys, walkers, etc.)

I've taken three tumbles since Al first got his hooks in me. Once was getting out of the car. I pitched forward and braced myself for a jarring hands-first landing. Better the hands being scraped than coming in headfirst.

The other times I was careless and not concentrating while going down stairs. First the left knee and then, a year later, the right knee. Both are scarred still. But, again, better the knees than the head.

Where am I? Part 1

I've gotten lost, seriously lost, twice.

The first time I was still driving and had not been tested for Al. From a distance I realize now that it was a preamble of Alzheimer's and that awful feeling of being utterly disoriented.

I was in my SUV, it was nearing twilight, the road was dry, and it was rush-hour traffic. I was going on an errand over a route I had driven often . . . and then, quite without warning, I blanked out. I froze.

What had been a simple task I've done a million times suddenly became a confusing jumble. I missed my turn and had to backtrack. But I didn't recognize where that led me, and I slowed to a crawl, peering and squinting, looking for something familiar. The farther I went, the more confused I became.

I read the road signs out loud but had no idea what they meant. Should I get off at the next exit? Or the one after that? Or just keep on going?

Panic enveloped me. Al had me by the throat. My breathing was harsh and laboring. Look, over there, a filling station. I'll ask for directions. Someone will know where I want to go. Right?

Except I couldn't talk. I stuttered and stammered and the more agitated I became the more gibberish came out of my mouth. And I forgot . . . I forgot where I wanted to go.

I gave up trying, got back in the SUV, and drove off.

Directly into oncoming traffic.

I was going the wrong way on a one-way express. Horns blared, frenzied headlights signaled me, and I frantically jerked my way through a maze of thundering metal and I heard someone screaming - it was me.

No way I was getting out of this alive.

And I wouldn't have, but for the grace of God.

Eventually my pulse subsided and I called home and, with the aid of ground-control computers ("Recalculating"), I found safe harbor.

Where am I? Part 2

It was July, sweltering, sticky, suffocating. You know that saying "Only mad dogs and Englishmen venture out in the noonday sun"? Add to that list an idiot in his late 70s with Alzheimer's who knows better but is anal-retentive obsessive and determined to get in his daily walk come hell or high water. (You can hear Al laughing.)

For variety's sake I made a turn at an intersection I normally plowed on through. And then when I decided to get back on familiar turf I blanked out and had that queasy, ominous feeling I remembered from my SUV horror. I walked faster. As if that will get you to where you're going - and, by the way, where is it you're going again?

Of course, going faster only dehydrated me. If that wasn't bad enough there came a sudden, urgent message from my bladder. I was, you'll pardon the expression, hung out to dry.

So I wet myself.

I was wearing black shorts, thankfully. They were welcome camouflage. I confess to feeling shame and guilt and embarrassment . . . and, yes, immense relief.

I walked on, panic-stricken, past banks and funeral parlors and schools, and looked up to find myself standing in the middle of a median strip on West Chester Pike with traffic roaring past on both sides. I had no idea how I got there. It was as though I had been sleepwalking.

But, glory be, there was a familiar landmark. A Wawa. From here I could cruise home, after 90 minutes in the broiling noonday sun, with mad dogs, Englishmen, and Al.

Time-out

To the nurses and the podiatrist and the acupuncturist who have written to me since this series began June 5. To the therapists and the biochemists and the herbalists, to the pastor and the teachers and the care givers, to the thoughtful donors who offered me vitamins and Depends and Indian spices and crossword puzzles and free MRIs . . . and a brain scan . . . and especially to those who have lost loved ones to this insidious disease . . .

And to the other 2,000 emailers with their kind and generous sentiments, my eternal gratitude. I have been overwhelmed by your response to my journal these past five Sundays detailing my fight against that gutless little weasel, Al.

But this is not goodbye. It is only time-out. It is my intent to continue the journal from time to time. Having you with me is at once humbling and uplifting.

This was only Round 1.

And we're still here, Al. We're still here.

Bill Lyon is a retired Inquirer sports columnist. lyon1964@comcast.net


INSIDE

Bill Lyon's doctor answers: "So how does he do it?" A16.

Readers pay tribute to Bill Lyon and his battle. Currents, C5.