For Chocolic: Story of the "Frozen Addicts" (Drug-induced Parkinson's)
Patty
Turns out there is a book that was written in 1995 or 1996 on the case, as well as
a PBS documentary. The story of the woman who I gave money to have the
implant (but it didn't work) is at the bottom of the page. She wasn't initially included
because she was too far gone. I believe money for the other two came from a
government grant. Dr. William Langston, founder and CEO of The Parkinson's Institute in
Sunnyvale CA,
is also the current Director of the Michael J. Fox Foundation Medical Research Committee.
From an earlier Boston Globe article:
The Swedish researchers, led by Drs. Hakan Widner, Olle Lindvall and Anders Bjorklund,
agreed to perform implants on the two severely affected "frozen addicts" in part for
compassionate reasons. But their case was scientifically important, because effects of the
implants on the chemically induced Parkinson's disease were more easily evaluated than in
patients with ordinary Parkinson's, in which the symptoms change as the disease worsens.
`Frozen addicts' yield neural disorder clues
Richard Saltus,
Boston Globe
Nov. 30, 1992
It was far more than a humane act when Swedish researchers agreed several years ago to
give two precious slots in their experimental brain implant program to a pair of severely
disabled drug addicts from California.
In attempting to reverse the symptoms of drug-caused Parkinson's disease in the two
so-called "frozen addicts," the Swedish physicians would also be carrying out the most
critical test yet of brain tissue transplants.
At stake in the 1989 operations was the very future of the transplants, an ambitious new
strategy for treating degenerative brain diseases. By transplanting bits of healthy nerve
tissue from aborted fetuses into key brain centers, researchers hope ultimately to restore
deficient chemicals and repair damaged brain cells in devastating ailments such as
Parkinson's disease, spinal cord injuries and Alzheimer's.
The addicts were a handful of drug users from the San Jose area who had become paralyzed
and afflicted with tremors in 1982 after shooting up heroin contaminated with a toxic
byproduct, MPTP. By an unlikely coincidence of chemistry, the botched heroin sample burned
out precisely the same brain circuits in the addicts -- in a matter of hours -- that die
over a period of years in typical Parkinson's patients.
The addicts' highly unusual form of Parkinson's, because it was so specific and
unchanging, would provide an ideal opportunity to determine whether brain transplants had
a future. If they didn't work in these patients, their chances of ever being successful
would be greatly reduced.
"This was an experiment that had to work, in order to go ahead" with the research, said
Dr. Stanley Fahn, a Parkinson's specialist at the Columbia University College of
Physicians and Surgeons.
"It did work," he said. "The patients are better than they have ever been."
That was the good news contained in a dramatic report last week in the New England Journal
of Medicine. The neuroscientists from the University of Lund, along with their US
colleagues in San Jose, said the implants brought substantial and long-lasting relief of
Parkinson's symptoms in George Carillo, 52, and Juanita Lopez, 40.
As hoped, the implants had alleviated many of their Parkinson's symptoms and boosted the
drastically deficient levels of dopamine in their brains. Dopamine is a nerve cell
chemical that is crucial for controlling the body and extremities. Though they were by no
means cured of Parkinson's, a movement disorder that in this country affects up to 1
million people, Carillo and Lopez made impressive gains after surgery.
Before the operations, their movements were slowed, their extremities were stiff, their
walking and speech were impaired and they went through frequent "freezing" episodes when
they couldn't will their bodies to move. They were seized with violent tremors.
Slowly, over a year, Carillo and Lopez regained much mobility. They could dress, feed and
otherwise take care of themselves, though Lopez continued to need some help.
When evaluated at the California Parkinson's Foundation research center in San Jose, they
were found to walk more easily and steadily. They could perform hand and finger movements
more quickly, and Lopez had no trouble rising from a chair, something she had trouble
doing before. Carillo even mounted a bicycle and rode off smoothly -- the first time he'd
done that in 10 years.
"We knew George was better when he got arrested for shoplifting," said Dr. J. William
Langston, director of the Parkinson's foundation, which is collaborating with the Swedish
team. "But we knew he wasn't totally improved, or he wouldn't have been caught."
Dr. Ole Isaacson of McLean's Hospital in Belmont, a neuroscientist who also does research
on brain grafts, is heartened by the success. "I am very encouraged by the results on the
MPTP patients," he said. "It proves the idea that neural replacement will become the
therapy of the future."
The results did indeed spur optimism for continued research, but scientists caution that
the addicts were far from cured. "They've gone from being extremely severe Parkinson's
patients to moderate Parkinson's patients," said Dr. Hakan Widner, a physician with the
research team at the University of Lund.
But for an individual suffering from the slowly progressive disease, that would be like
turning back the clock by a number of years, other scientists point out.
The addicts and their unique form of Parkinson's represented a perfect opportunity to test
the implants, but the bizarre coincidence is not likely to occur again. The result of an
illicit drug-maker's error, the tainted heroin contained a toxin that damaged -- of all
the millions of cells in the brain -- just those in the center that controls movement. The
knot of dark-pigmented nerve cells, called the substantia nigra, manufactures dopamine, a
chemical necessary for the movement-governing nerves to work properly. And it is this
center that, for unknown reasons, suffers nerve death in regular Parkinson's.
"They are the perfect bridge between the animal experiments" in which brain implants had
first been shown effective "and the idiopathic human patients," in whom the effects of the
grafts are more difficult to assess, Widner said of the addicts.
Because the addicts' Parkinson's symptoms were stable, unlike the constant worsening of
the typical form, the effects of the grafts would stand out more clearly. And because
normal Parkinson's disease does progress over time, scientists speculate that whatever
causes it may still be at work in the brain, and that it might attack implanted tissue,
clouding the effect of the implants. In the addicts, the contaminated heroin they took in
1982 was like a hit-and-run driver. The MPTP that killed off brain cells had long since
vanished.
Along with the Swedes' work, the New England Journal contained reports on the work of two
other teams with 10 patients with so-called "idiopathic" Parkinson's, that is, the usual
form of the disease, whose cause is unknown. Some of these patients experienced virtually
no improvement, others modest relief of symptoms.
Taken together, the encouraging research has led to renewed calls for an end to the 4
1/2-year-old moratorium on federal funding of fetal tissue transplant research in this
country.
Still, Langston, who led the effort that uncovered the MPTP-Parkinson's link, cautions
that the results are not yet good enough to merit widespread use of implant therapy. He
also opposes the notion of collaborate clinical trials involving several research centers
until many questions have been studied.
For example, the two addicts received more fetal tissue in their implants than any of the
other patients reported on last week. Is that the reason for their greater success?
Another crucial question is whether implants will be as successful in normal Parkinson's
patients: Could the agent that causes the progressive brain damage, whether it's an
environmental toxin, a genetic flaw, or some factor related to aging, attack the implanted
tissue?
Langston is the person who has held together the odd alliance between the addicts, who are
social misfits unused to cooperating with institutions, and the researchers. The two
groups, in fact, have developed a wary friendship.
In addition to Carillo and Lopez, five other addicts took the most potent version of the
bad street drug, and they, too, were fast-forwarded into advanced Parkinson's disease.
Langston's group is keeping tabs on more than 100 other addicts who apparently took more
dilute forms of the drug, to see if they will develop Parkinson's as the years pass.
The complicated joint project has also been an exercise in cross-culturalism. Widner has
spent many months in San Jose as the Swedish team's liaison with the Americans. He has
befriended Carillo, driving him to back and forth for medical evaluations and taking him
to a nearby flea market. When Carillo and Lopez were in Sweden for the implants, it was he
who, along with hospital nurses, got them American videos and hamburgers and took them on
excursions outside the hospital in an effort to ease the strangeness.
Certainly the addicts, whose lives had revolved around drugs and petty crime (some had
spent considerable time in jail), may not evoke as much sympathy as most Parkinson's
patients.
However, says Widner, "No matter what these people have done, they are paying for it with
life imprisonment in their own bodies."
Few would not be moved by the plight of Connie Saenz, 35, the most severely affected of
the MPTP cases. She had just begun using drugs, influenced by her boyfriend, when she got
the tainted heroin. Today she lives with her 12-year-old son and her mother in a small
town in the Salinas Valley, south of San Francisco. The MPTP destroyed so many of the
dopamine-making cells in Saenz' brain that she virtually cannot move. She sits as
motionless as a wax figure in her living room.
Widner said it's clear her brain is still is able to process information normally. But one
can only guess at the emotional damage. For a time, Saenz took L-dopa, the standard
Parkinson's drug, which supplies dopamine and improves mobility, but it caused such
frightening hallucinations she has abandoned it.
"She was always a very happy little girl," her mother said in an interview earlier this
year. "There are so many things she wants to say, so many things she wants to tell her
son," she adds, evidently inferring this from the faint moans and mumbling that are
unintelligble to anyone who doesn't spend a lot of time with Saenz.
Langston is worried that she is worsening, and he would like to send her to Sweden for the
implant surgery. She was considered too severely affected to be included in the group. But
now that President-elect Bill Clinton has indicated he will lift the funding moratorium on
research, perhaps Saenz has a better chance for an implant in this country.
Patty
(Contributor), J. William Langston :
http://www.parkinson.org/pdclusters.htm
Department of Psychiatry, Stanford University Medical
Center, California, July 5, 1982
Connie Sainz was in pain. Unable to move, she just lay in the bed surrounded by doctors
and nurses. They asked her questions, she tried to answer them, but no words emerged from
her lips. Connie's nightmare had begun a month before, when she was resting in her
apartment in San Jose. First Connie had felt tired, then stiff, then rigid. It was as if
some evil spell were slowly encaging her in her body. By the time her sister Stella
returned from work, Connie was lying completely immobile with her eyes wide open; unable
to respond or talk. At first, Stella thought that it was the effects of heroin withdrawal.
That summer, much to the consternation and shame of her family, Connie had started using
heroin. After lots of family arguments, she had agreed to try and kick the habit, Perhaps
this was the gruesome first effect of withdrawal.
After three days, Connie was worse. Her face lost all expression and now looked like a
mask, Her body became twisted and contorted and underwent sudden jerks. By the tenth day,
she looked more like a marble sculpture than a living woman. Stella had no idea what to
do. In desperation she lifted Connie-into the backseat of her car and drove north on Route
101. She had heard that Stanford had some of the best doctors in the world. That was where
she would take Connie. Surely they would be able to cure her.
The emergency room doctors at Stanford had seen nothing like this and carried out a series
of tests. Unable to discover a physical reason for Connie's condition, they focused on a
detail in her medical history that Stella had provided. Apparently Connie's problems had
begun after word reached her that her boyfriend Toby, a Salinas drug dealer, had become
paralyzed. Perhaps this was a case of sympathetic paralysis- Connie had been so affected
by the news of Toby's paralysis that she had undergone a hysterical conversion reaction,
developing paralysis in sympathy. The problem was, as they put it, "all in her mind." This
line of reasoning led them to admit Connie to the psychiatric ward, where she was
subjected to a number of tests, including sodium amobarbitol (truth serum), to try to get
to the bottom of her hysterical paralysis and what they saw as her "deeply rooted
psychological problems."
To Connie, trapped inside her body listening to all this earnest theorizing, it was living
a nightmare. She knew what she felt, but she couldn't communicate with the doctors. There
was absolutely nothing wrong with her mind, the problem was that her body no longer did
what her mind wanted. To make things worse, she was in terrible pain. She had been stuck
in a frozen position so long that one of the nerves in her right leg had, been crushed.
After two weeks of frustration, the psychiatrists finally gave up in their therapeutic
attempts and sent her home with a diagnosis of "functional paralysis." Her mother was told
that Connie would eventually get better; the problem was all in her mind.
Comment Connie's paralysis was not "functional" or hysterical. She was later shown to have
PD caused by injecting herself with heroin contaminated with MPTP.
===================
Two more stories about drug induced Parkinson's at
http://www.parkinson.org/pdclusters.htm
Chocolic
"Patty" <eartha...@yahoo.com> wrote in message
news:eb6897a4056ba7bf...@news.teranews.com...
> Chocolic, thanks for asking for more on the story or I might not have
researched it.
> Turns out there is a book that was written in 1995 or 1996 on the case,
as well as
> a PBS documentary. The story of the woman who I gave money to have the
> implant (but it didn't work) is at the bottom of the page. She wasn't
initially included
> because she was too far gone. I believe money for the other two came
from a
> government grant. Dr. William Langston, founder and CEO of The
Parkinson's Institute in
> Sunnyvale CA,
> is also the current Director of the Michael J. Fox Foundation Medical
Research Committee.
>
>
Thanks for the interesting articles, Patty. I've done some googling to
see any recent updates on Saenz's condition but haven't found anything.
Chocolic
lettyg...@gmail.com
brad...@gmail.com
> hi patty this is connie Sainz's niece and well to be quite honest their hasn't been much of a change watching the video and the way she is now is still pretty much the same