Augie In Action! Augie In Action! - Ihrsa

younger brother Dave accompanied Augie and Lynne on
this second trip. Doctors subjected Augie to an increasingly
invasive series of neurological tests throughout the day.
These culminated in an EMG, a procedure Augie never
speaks of without wincing.
Electromyography, a nerve induction velocity test, requires the insertion of needle
electrodes through the skin and into the muscles. The patient contracts and relaxes his
muscles by turn, and the resulting electrical impulses register on an oscilloscope to be
weighed against a known healthy standard. The disorders that can cause abnormal EMG
results run into the dozens and include, in addition to ALS, Guillain-Barré syndrome and
muscular dystrophy.
Most literature on the procedure includes language to the effect that the patient “may feel
some pain or discomfort when the electrodes are inserted.” Augie’s description is a bit more
incisive: “It hurt like hell.”
Stretched out on the examination table, his body bristling with needles, Augie could see
little of what was going on around him beyond the face of the neurologist conducting the
test, who was monitoring the screen of the oscilloscope. “I was looking at the expression on
his face,” Augie said, “and it wasn’t good.”
By Monday evening, Augie still had no definitive diagnosis, though the inquiry was clearly
moving into an area where none of the answers would be welcome. There is no affirmative
test for ALS. The diagnosis is one of exclusion, and early Tuesday afternoon, Augie and
Lynne entered neurologist Ben Smith’s office and were confronted by some stark news.
Augie’s team of physicians had succeeded in eliminating all possibilities but two, multiple
sclerosis and amyotrophic lateral sclerosis—MS and ALS.
A definitive test for MS requires a spinal tap—one more needle buried deep—which Augie
submitted to later that afternoon. Then he, Lynne, and Dave awaited the results, passing
several hours strolling through the Mayo Clinic’s renowned cactus garden and indulging
in what Augie and Lynne describe today as a perfectly surreal driving tour past Phoenix
hotels for the benefit of Augie’s brother, who was visiting the area for the first time. All the
while, Augie and Lynne shared one wish.
“Can you even imagine,” Augie asks today, “hoping to have MS?”
By midafternoon on Tuesday, March 29, the spinal tap results were in, and Augie and
Lynne sat together on Dr. Smith’s office sofa awaiting Augie’s diagnosis. Dr. Smith delivered
the baleful news as delicately and empathetically as circumstances would allow. “I almost
felt sorry for him,” Lynne said, remembering that afternoon. “He was a very nice man,
and very uncomfortable. I think I had tears running down my face. Augie was stunned.
He didn’t say a word.”
Even after four rigorous days of testing at one of the premier medical facilities on the
planet, Dr. Smith could only allow that Augie had an 80 percent chance of having ALS, a
testament to the mysterious and elusive nature of the disease.
When Augie and Lynne asked about potential therapy and treatment, they got more
bad news. There was only one FDA-approved drug specifically for ALS: riluzole, a glutamate
blocker that can extend the life of an ALS sufferer by sixty to ninety days, though even
those modest figures are in some doubt. “You’d best,” Dr. Smith advised Augie, “get your
affairs in order.” —|
Reprinted by permission of Bloomsbury USA. Copyright © 2007 by T.R. Pearson and Augie Nieto
You’d best,”
Dr. Smith advised Augie,
“get your affairs in order.
“
”
www.ihrsa.org | MARCH 2008 | Club Business International 61