What happens when an award-winning science writer is struck by a disease he would ordinarily be writing about? Jon Palfreman’s Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease is the answer.
Diagnosed with Parkinson’s in 2011, Palfreman set out to learn all he could about this mysterious ailment that defies simple description.
His one-paragraph attempt comes close:
“... people with Parkinson’s progressively lose core pieces of themselves. We forget how to walk. Our arm muscles grow weaker. Our movements slow down. Our hands fumble. Simple fine-motor tasks like buttoning a shirt or balancing spaghetti on a fork become a challenge. Our faces no longer express emotions. Our voices lose volume and clarity. Our minds, in time, may lose their sharpness . . . and more.”
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The “more” varies widely from patient to patient. Some lose the sense of smell. Some shuffle instead of stride, freeze in place as they try passing through a doorway. Some drool. Some have all the symptoms, others just a few. Some are dramatically helped by the drug regimen prescribed, others continue to struggle as the regimen gets tweaked.
Parkinson’s affects 1 million Americans, 7 million worldwide. It is a disease that disproportionately strikes older people, so it is projected to touch even more as the population ages. For reasons unclear, the brain’s natural production of dopamine — a neurotransmitter that sends signals to other nerve cells — comes under attack and Parkinson’s symptoms are set in motion.
Palfreman treats his readers to a complex but cogent explanation of how the process works — or, more accurately in PD — doesn’t.
Like many PD sufferers — actor Michael J. Fox once among them — Palfreman wouldn’t, at first, disclose his ailment. He soon overcame that reluctance and plunged into his research. What resulted is a deftly crafted and authoritative literary journey that takes his reader from James Parkinson’s 1817 discovery of the “shaking palsy” to a worldwide Parkinson’s symposium nearly 200 years later — with many stops between.
Among them dancer Pamela Quinn, NBA player Brian Grant, cardiologist Thomas Graboys, each a PD sufferer, each a profile in courage and optimism. They share billing with an array of biologists, clinicians, researchers and doctors whose work he introduces a chapter at a time.
Parkinson’s is a neurodegenerative disease that so far has proved to be irreversible. Because the disease is slow to develop, its diagnosis often comes years after onset. Early signs are loss of smell, REM sleep disorder and constipation, all easy to overlook in older people. By the time tremors start— if they start at all — the disease may have progressed into its third or fourth stage.
Palfreman does a superb job of describing the torturous search for a cure or, at a minimum, an effective treatment to arrest PD’s progress or diminish its symptoms. Research is slow by its nature, but regulatory obstacles and drug company profit concerns slow it further.
For example L-dopa, the drug used in PD treatment since the late ’60s is marginally effective because so little of it gets to the brain, 5 to 10 percent, Palfreman says. Some current research suggests that rate could be substantially improved if research money were available to develop new drugs. That’s not likely, given the cost and slowness of research and urgency of need to combat more immediately lethal diseases.
Brain Storms is alternately optimistic and unapologetically realistic; PD is irreversible. The best hope is early detection and treatment, but early detection is rare and treatment seems to be marching in place. Still, exercise seems to help. A positive attitude goes far. Researchers are toiling harder than ever. And giving up just deepens despair.
As a PD sufferer myself, I found Brain Storms both uplifting and deeply informative. But if at bottom, what you want out of a science book is clean prose, clear thought and fascinating stories, Palfreman delivers.
Doug Clifton is the former executive editor of the Miami Herald, and former editor of the Cleveland Plain-Dealer.