By ELIZABETH SHOCKMAN, ALEXA LIM • OCT 6, 2015
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| Jon Palfreman |
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.”
http://kgou.org/post/what-it-feels-have-parkinson-s-disease#stream/0
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