In 1985, science journalist Jon Palfreman investigated a group
of drug addicts who were struck with Parkinson’s-like symptoms after taking
tainted heroin.
Thirty years later, Palfreman was diagnosed with Parkinson’s
disease himself. His book, “Brain Storms,” describes his journey with the
disease and new treatments for patients.
“Initially I denied [my diagnosis] and sought second opinions. I
got pretty angry. I tried to keep it secret for a while, just like Michael J.
Fox did,” Palfreman says, “It took me, I’d say, about a year before I really
processed it properly and then I realized that I had a destiny to use my
training as a science journalist and my insights as a patient to explore this
malady, which was now going to be part of my life.”About 60,000 people each
year in the US alone are diagnosed with Parkinson’s disease. Palfreman says the
malady means many things that he used to do automatically, now come with
much more difficulty.
“It is very much like getting on a plane and going to London and
renting a car. You can drive on the left-hand side of the road, but you have to
use your conscious brain to pay attention. Everything’s a bit harder. When I
walk, I have to sort of consciously move my arms back and forth. Whereas, when
a healthy person does it, it’s automatic. And so a lot of things that you got
for free you have to work at,” Palfreman says.
The disease has three stages. The first noticeable symptoms are
subtle, such as a loss of smell, constipation and possible sleeping
disorders. After that, the disease attacks a person’s ability to move. The
third stage produces cognitive impairment and hallucinations.
“What we classically think of Parkinson’s — the tremor, the
slowness, the rigidity, the stooped gait — is really the middle act of a
three-act play and that, basically, the diseases present maybe 10 or 15 years
before a person gets diagnosed,” Palfreman says. “It’s a much more
systemic disease than it was once thought to be.”There are several new
treatments for the disease Palfreman has been watching. One of them is based on
the theory that the disease is caused by a protein, alpha-synuclein, going
rogue, forming clumps called amyloids, and jumping from cell to cell, killing
cells in their wake.
“If alpha-synuclein is causing all the problems, then trying to
reduce the levels of it makes perfect sense, and in the next year or two, going
into clinical trials, there are a number of products which are designed to sort
of dissolve alpha-synuclein,” Palfreman says. “If they work, I mean
the prospects are amazing. Somebody who didn’t have the disease, if you
can get in early enough, would never develop the motor symptoms. And
somebody like me who had the motor symptoms could possibly be stabilized so it
didn’t get any worse. So there’s a lot of excitement at the moment around
this.”
Palfreman says there are other things people with Parkinson’s
can do to control the disease.
“The one thing which really everybody should do is regular
exercise because people who do exercise and stay mobile, they do much,
much, much better than people who withdraw or give up,” Palfreman
says. “Because you’ve still got the conscious part of your brain, you can
still drive like you’re driving into London on the wrong side of the road. It
just takes a bit more energy and effort, but it still works.”
In the future, Palfreman predicts medical specialists will
develop more advanced ways to control the disease.
“Just like we have very sophisticated heart pacemakers,
we might get a situation where I might get an electrode in my brain and,
just before my my left hand wants to set off a tremor it sets off a pulse
and reboots that part of the brain. And I think these things are pretty
promising so that even if you haven’t got a total cure, the management thing
will become much better and we’ll be able to live pretty much essentially
normal lives.”
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