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JOURNEY OUT OF HOPELESSNESS
 
GREENFIELD WOMAN THANKS READERS WHOSE DONATIONS RESTORED HER HUMANITY
 
THE MAGIC of a certain smile is a common theme of song and poetry. But I
don't think I've ever seen a more meaningful or beautiful smile than those
being summoned by Connie Sainz. Entombed in a body as rigid as wood for a
dozen years, her limbs gnarled and useless, Connie, 37, received a highly
experimental brain cell transplant a year ago.
 
On a day last week, on a routine visit by her physical therapist at her
parents' home in the little agricultural town of Greenfield, in south
Monterey County, she was doing exercises.
 
She smiled. She brushed her hair. She stood and walked by herself.
 
I honestly felt as if I were witnessing a miracle.
 
And, oh yes, Connie had some words for you, the Mercury News readers who
donated most of the $50,000 to pay for the trip to the University of Lund,
Sweden, where her operation took place.
 
''Thank you,'' she said, in halting but clear enough words.
 
I asked her how she had felt about that amazing journey, after so many years
of hopelessness.
 
''Very scary,'' she said, with another wonderful smile.
 
DR. BILL Langston, Connie's advocate and physician, watched with delighted
eyes as Connie went through her physical therapy. ''This is inspiring,'' he
said. ''It is much more than I had hoped for.''
 
Langston, the renowned Parkinson's disease scientist, described the essence
of Connie's improvement this way: ''What makes you human is the ability to
interact with other humans. If you lose that, and Connie had, you lose the
essence of life. It takes away what makes you a person. Connie is still very
disabled, but she has regained her humanity. She is no longer a statue in the
corner.''
 
He cautioned against predictions for Connie's future, saying that her
parkinsonism had advanced well beyond the point at which many people die of
the disease. But a recent PET scan, in which a radioactive substance is
injected into the brain and then photographed, demonstrated that the neural
cells that were transplanted are thriving. Her improvement is real.
 
''I feel hope -- 100 percent hope,'' said Connie's mother, Nellie. ''It has
all been worth it. Now, when she can walk outdoors by herself and talk
clearly, that's what I want.''
 
AS THOSE of you familiar with this story may recall, Connie was 25 years old
in the summer of 1982, when a decision to join her boyfriend in injecting
street drugs proved disastrous.
 
Of the 500 or so people believed to have taken what was purported to be
synthetic heroin and sold on the streets of San Jose, a half-dozen, including
Connie, were extremely damaged. They began being delivered to Bay Area and
central coast emergency rooms. They were unable to communicate what had
happened to them. Their bodies were frozen.
 
Through amazing medical detective work, Langston and his team determined that
the garage chemist had not made synthetic heroin at all, but rather a
chemical known as MPTP, which, in the human body, metabolizes into a
substance almost identical to a toxic pesticide.
 
MPTP destroys the part of the brain that produces dopamine, and as a result
mirrors the advanced stages of Parkinson's disease, one of the most prevalent
of the degenerative brain disorders.
 
Langston's MPTP discoveries led to an explosion of Parkinson's research
worldwide, including the multifaceted assault against the disease taking
place at the institute he leads in Sunnyvale.
 
Doctors in Sweden gave the neural cell transplant operation to two of the San
Jose street drug users. In the procedure, fetal brain cells are grafted into
the damaged portion of the brain. The cells mature and fulfill their normal
function, the production of dopamine.
 
The Swedish team promised Langston that they would take Connie, whose
condition was much more severe, if the operation proved successful with the
first two patients. It did. And last spring, it was Connie's turn.
 
ALL OF this is now depicted in a new book by Langston and public television
producer Jon Palfreman titled, ''The Case of the Frozen Addicts.''
 
The book is a fascinating combination of medical mystery, cutting-edge
science, and a tragedy among heroin users that stretched from Salinas to San
Jose. It also tells how this saga offers hope to millions who suffer from
Parkinson's, Alzheimer's, and other degenerative diseases.
 
As ironic as it seems all this time later, Connie and others are benefiting
from the science that originated in their own personal disasters.
 
Two years ago, when I drove down with Langston from the Parkinson's Institute
to visit Connie in Greenfield, the scene was far different. Sophisticated
computer testing indicated that she was still cognitive, that her brain
comprehended, beyond the frozen mask. But even with the aid of elaborate
computer switches, she couldn't communicate.
 
Now she is a smiling human being who can walk a bit and respond to questions.
Surgery to reattach her ankle ligaments will greatly enhance her mobility.
But Langston said overcoming language ''ignition failure'' -- the inability
to talk spontaneously in expressing one's thoughts -- will take more time.
 
''But when that happens, she will really be back,'' he said.
 
I could not resist sitting down next to Connie and telling her how much I
admired her courage. She turned her eyes and said, ''Thank you.''
 
Don't give up, I said.
 
Painstakingly, but clearly, she responded.
 
''I won't.''
 
Write Jim Trotter at the Mercury News, 750 Ridder Park Drive, San Jose,
Calif. 95190; phone (408) 920-5024; or fax (408) 288-8060. Send Mercury
Center e-mail to TrotterJim.
 
MERCURY CENTER ID: me57349t
 
 
Transmitted:  95-05-28 05:54:54 EDT
 
Note:
 
Dr. J. William Langston will be on ABC Prime Time Live, Wednesday May 31st to
talk about Parkinson's and the book he just wrote.  He is also said to be
scheduled for ABC Good Morning America.  I would guess this could be May 30,
31 or June1.
 
Regards,
Alan Bonander ([log in to unmask])