hi all
At 10:16 1999/02/27 -0500, judith wrote:
>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
><[log in to unmask]>
> ^^^
> \ /
> \ | / Today’s Research
> \\ | // ...Tomorrow’s Cure
> \ | /
> \|/
> ```````
>
thank you alan
thank you judith
this needs to be plastered on every pd medico's office door
as well as on every parkie's own heart and brain
imho
to every parkie reading this
i strongly recommend researching in our pd list archives at:
<http://james.parkinsons.org.uk/>
under:
DRUG-INDUCED PSYCHOSIS
we have to be our own best advocates
and the most knowledgeable pd experts we know
janet
janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
<http://www.newcountry.nu/pd/members/janet/index.htm>
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