An edited version of the following article appeared in the London Free
Press this morning with this wishy-washy headline: Give Parkinson's
Researchers a chance.
Here's the original...
The actor Michael J. Fox said recently he doesn’t think he’ll
still
have Parkinsons when he reaches 50 years of age. He’s 37 now. Everyone
hopes he’s right, but there are many tears to be shed before a cure
becomes a fact.
Our friend Joe had Parkinsons too. He was hoping for a cure, or
at
least some relief, but he died a couple of weeks ago (Jan. 19), strapped
to a bed in a psychiatric ward. He was only 57.
He was in that bed because of drug-induced psychosis, and the
drugs he
had been taking were those Parkinsonians need to prevent them from
becoming immobile.
Now Joe’s family, and other people with Parkinsons, want to know
why he
died. The drugs are suspected, but nobody knows for sure.
Joe was co-leader of the Young Onset Connection, a Parkinsons
support
group, and had worked at GM Diesel in the design and manufacture of
armored vehicles, until his Parkinsons forced him to leave a year or so
ago. He was a bright, intelligent individual who loved to show his
mint-condition Mustang convertible at car shows.
A couple of years ago, Joe volunteered to take part in a test of
one of
three new Parkinsons drugs then in research stages, and which have since
become available for treatment of the neurological disorder. He took the
drug Mirapex, under the supervision of a neurologist at University
Hospital in London.
When the other new drugs became available, he asked about them
too, and
his neurologist prescribed Tasmar, the latest and most promising.
Joe didn’t like having Parkinsons, and wanted to get rid of its
distressing symptoms — such things as shuffling gait, stiffness of
movement and slurred speech. Tasmar seemed to work.
But then the manufacturer of the drug was forced to withdraw it
from
the market. Health Canada said, “Three deaths from irreversible liver
damage associated with the use of Tasmar have been reported from around
the world. As of Nov. 23, 1998, some 100,000 patients have been
prescribed Tasmar; of these, 1,500 are Canadian.”
Joe was taken off Tasmar over a period of nine days, and put on
Requip,
another of the new drugs. It is known that withdrawal from some powerful
drugs can cause serious reactions. Other Parkinsonians who had been
taking Tasmar reported some “freezing” of their limbs and cramping in
muscles as they came off the drug, but none as severe as Joe. His body
became so stiff that his wife had to call an ambulance to take him to
hospital. Even his swallowing mechanism had stopped working.
Requip didn’t stop the freezing problems, and Joe was taken off
it too.
Three weeks later he was released, with everything except his
swallowing apparently working properly. He had to go home with a feeding
tube in his stomach.
During his stay in hospital, another drug had been added — an
older
drug called Amantadine.
Within two days, Joe was back in the emergency department. He
had
become psychotic during the night.
The doctors reduced his medication and sent him home.
The same horrors happened the next night, and at 3 a.m. he was
rushed
to Emergency again. After a wait of nearly 12 hours, during which
hallucinations and waking nightmares attacked him over and over, he was
admitted, and given anti-psychotic medication.
But it happened again. During the night he became psychotic and
started
shouting at imaginary people, so he was sedated and strapped into his
bed. Nurses watched him throughout the night. They checked on him at
7:20 a.m. and he was restless. At 7:40 he was dead.
Joe’s doctors are at a loss to explain why Joe died. His
neurologist
could only attribute it to “sudden death,” which sometimes happens to
people who have taken large doses of drugs. But none of his patients had
ever died in such a way before.
So what killed Joe?
Was it the ill-fated Tasmar or one of the other new drugs?
Was it the cumulative effect of all three new drugs along with
the
Sinemet (levodopa) nearly all Parkinsons patients take?
Or was it the shock of being held down in a psychiatric bed? Joe
had a
fear of such places.
Joe’s tragic story illustrates the fact that while scientists
are
coming up with great new drugs for such illnesses as Parkinsons, these
same powerful drugs may do unknown damage.
Perhaps when tissue samples sent to the Centre for Forensic
Sciences in
Toronto are analysed — and that may take months, because of a huge
backlog at the centre — the doctors will know what killed Joe, and if it
was drugs, they will be able to prevent other Parkinsonians from
suffering the same fate.
In the meantime, People With Parkinsons must take their pills
several
times a day and hope they aren’t killing themselves in the process.
But what alternatives are there to drugs to treat Parkinsons?
Fetal cell transplantation holds great promise, but ethical
issues make
it unlikely the technique will become widely used. Even pig cell
transplantation, which has proven safe and effective in tests, has been
given a major setback by a moratorium in Europe on testing such research
on humans.
Brain surgery is risky and not always effective, but it remains
the
best hope for people for whom drugs are no longer working properly.
Miracle drugs and therapies are within grasp of researchers, but
how
much more suffering must take place before the cure for Michael J. Fox
and the rest of the world's Parkinsonians is found?
Alan Richards is a former Free Press senior copy editor and a member of
Parkinsons support groups in London.
--
Judith Richards, London, Ontario, Canada
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