PALM SPRINGS, Calif. — When he whispered "PSP" I thought he was referring to this town's airport code. But no. He couldn't remember what this PSP thing stood for, but he knew what it was doing to our friend. Which is when I learned that a long-planned reunion wasn't going to go exactly as planned. And that her life was not to play out as she and her longtime companion had planned.
PALM SPRINGS, Calif. — When he whispered “PSP” I thought he was referring to this town’s airport code. But no. He couldn’t remember what this PSP thing stood for, but he knew what it was doing to our friend. Which is when I learned that a long-planned reunion wasn’t going to go exactly as planned. And that her life was not to play out as she and her longtime companion had planned.
PSP, in the instant case, is shorthand for progressive supranuclear palsy. The abbreviation is quicker, of course, and much quicker than the disease’s other name, which is Steele-Richardson-Olszewski syndrome, said handle bestowed on the Canadian physicians who isolated it from a host of other brain disorders almost a half-century ago. However the reference, it does its work quickly enough. In this case, one year.
“You’ll see the difference,” our mutual friend told me. “You can’t miss it. Her weight is the first thing you’ll notice.”
Indeed. At our first encounter her loss was striking. (Her boyfriend, and let’s refer to him here as her LTC, would tell me, away from her hearing, that it was 43 pounds). She (and we’ll call her Rose) was hardly skeletal, and she had never been remotely obese, but her 5’4” frame had been sturdy. It seemed frail against my last image of her.
It had begun in what I would later read was the classic PSP pathology: an abrupt onset of loss of balance, especially when sitting or standing, with consequent falling and the resulting bruising; difficulty in judging distance, notably when walking; a propensity for leaning forward once standing; gait reduced from its normal stride to much shorter steps, at times to a shuffle.
Later comes diminished speech and vision and, quite possibly, diminished behavioral inhibition. A grab-bag, then, of the sort of discomfits that accompany so many other degenerative diseases of the brain, notably Parkinson’s, which PSP in its early stages mimics, thus its not infrequent misdiagnosis. The National Institute says Rose is among 20,000 Americans with PSP, whereas Parkinson’s strikes 50 times that number.
LTC, as absolutely devoted to Rose as the day, a dozen years ago, they began sharing their lives, he a widower and she a never-married, is a shrewd fellow. He wonders if he noticed the symptoms before she did. Everybody stumbles every now and then, everybody falls every now and then. Not everybody stumbles and falls with the sudden frequency as Rose exhibited. Rose, with the busy agenda of a retiree who likes a busy agenda, dismissed it as being busy.
Having noticed symptoms, then recognized symptoms (there is a difference), LTC soon enough refused to dismiss them and gathered up Rose and made off with her for nearby Los Angeles. Two doctors there, then to the Mayo Clinic in Arizona for a second (or third) opinion, which was the dismaying concurrence. And then the short flight back to PSP, and the long days ahead of PSP.
How long the days, meaning, how many? Difficult to say with certainty, the doctors agreed. The average mortality is seven years from the onset of symptoms, but Rose could have twice that many years, though they won’t be the ones she and LTC anticipated. Already there is the cane; though she is annoyed with it, perhaps for what it represents, what it portends, and doesn’t rely on it, her doctors and LTC insist that it accompany her everywhere. Just to be on the safe side.
Rose has no safe side. (Do any of us?). Not does she yet acknowledge a down side: she keeps her calendar crammed with friends and charity benefits and gardening, and movies and craft shows and gallery openings, new restaurants and old favorites, shopping and volunteering and cooking and scrapbooking.
But just ahead are the autumn and winter months, the seasons when she and LTC love to travel. For years they’ve traversed the Republic seeing family and circumnavigated the globe seeing those few parts they’ve never seen, but now, for the first time, they are compelled to weigh their possibilities on the scale of PSP’s probabilities. PSP shares with its cousins the absence of a cure, and treatment is as yet restricted to amelioration of symptoms — a few pharmaceuticals, some physical therapy, that annoying cane.
The world will spend less in a year searching for a clinical solution than the U.S. will spend in a week in Iraq.
“What can you do?” sighs LTC.
More than we’re doing.
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Steve Barnes is host of Arkansas Week on AETN.