I knew this book would be good but not as good as it turned out to be. When you combine the skills of a trained reporter with that of a skilled documentary dramatist, then add the powerful ingredient that this person suffers from Parkinson’s disease, you get a powerful read.
Jon Palfreman has the right skills and experience to write the best book I’ve encountered on the current state of knowledge about Parkinson’s Disease. Palfreman is an experienced journalist and educator who was diagnosed in 2011. He is best known for his documentary work on Frontline and Nova.
His book Brain Storms: The Race To Unlock The Mysteries of Parkinson’s Disease (Macmillan) is the most thorough and compelling medical book I’ve read since The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee, an Indian-born American physician and oncologist.
The book’s scope extends from the discovery and naming of Parkinson’s disease by the English physician James Parkinson to the state of knowledge today about probable causes and the potential of exciting treatments to come. Throughout, he intersperses the stories of brilliant scientists who often uncovered clues by dogged laboratory work and sometimes by inspiration.
You will meet the Israeli researcher Beka Solomon, who discovered a virus that can potentially dissolve the brain lesions called Lewy bodies. You will also meet her son Jonathan Solomon, who started a small business to commercialize the use of this virus.
From the Solomon story and others like it in the book, I draw the clear inference that the big drug manufacturers are not trying very hard in the Parkinson’s arena. It appears that the cost-benefit ratio for Big Pharma favors other diseases. There are bigger profits in drugs for younger people than for the usually elderly PD population.
You will also meet a skilled dancer, Pamela Quinn, who after contracting PD found ways to retrain her brain functions so that she could still dance gracefully.
Writes Palfreman: “Quinn is certainly an outlier, with a slowly progressing form of the disease. But we can all learn from her. Her wisdom exhorts Parkies to keep active, to mindfully circumvent gait and balance issues. As she puts it, ‘“We must treat the mind as a muscle; it needs to be strengthened and made flexible just as much as our legs and core.”’
Palfreman traces the parallel research efforts in Alzheimer’s Disease and Parkinson’s Disease and the possible use of Alzheimer’s knowledge in finding so-called biomarkers in PD that have been developed for Alzheimer’s.
Palfreman writes vividly about the evolution of deep brain stimulation surgery and the hits and misses that have occurred as the surgery becomes more and more precise and effective.
Palfreman argues persuasively that the classic symptoms of PD, rigidity slowness and balance problems may be what he calls “the tip of a clinical iceberg. It now seems that Parkinson’s disease takes hold of an individual decades before any tremors appear and continues wreaking damage throughout the brain until the end of life..”
A patient’s symptoms can be far ranging, well beyond the classic neuromuscular ones. Palfreman writes:
“… in light of this evidence, many neuroscientists are lobbying to rebrand Parkinson’s disease from a motor disorder to a whole-body condition, involving an enormous number of signs, symptoms, and complaints. These include not only the classic features—such as bradykinesia, tremor, rigidity, postural instability, stooped posture, shuffling gait, freezing of gait, dystonia, facial masking, small handwriting, dysarthria (problems with articulation), dysphagia (trouble swallowing), oily skin, bladder problems, pain, constipation, and loss of smell—but a growing list of other problems as well.
People with Parkinson’s experience neuropsychiatric symptoms such as depression, anxiety, hallucinations, cognitive impairment, and impulse control disorder (the last caused by dopamine agonists). They suffer from a whole host of sleep-related disorders—including REM sleep behavior disorder, excessive daytime sleepiness, restless legs syndrome, insomnia, and disordered breathing while sleeping.”
Palfreman fingers the familiar alpha-synuclein protein as the major culprit, writing: “I find the notion that the disabling symptoms of Parkinson’s disease that I and other Parkies experience are caused by toxic species of alpha-synuclein spreading prion-like throughout the brain to be a very powerful one indeed. In a story with many setbacks, this body of research gives me genuine hope, for it suggests that in theory chemical interventions to break up and destroy the misfolded protein aggregates might help slow, stop, or reverse Parkinson’s. If given early enough, such treatment might even prevent the disease from ever reaching clinical significance.” (See my September 8 post to learn more about alpha-synuclein.)
Writing in the New York Times, Palfreman said:
“Here’s the theory scientists have come up with: Sometimes good proteins go bad. For multiple reasons (like genes, environment and age) proteins can “misfold” and stick to other proteins. When proteins do this, they can become toxic, capable of jumping from cell to cell, causing other alpha-synuclein proteins to do the same and potentially killing neurons (especially dopamine-producing ones) in their wake. This process is not confined to Parkinson’s disease.”
An intriguing hypothesis Palfreman offers is that until recently human beings rarely lived beyond their middle years. Could it be, he asks, that aging cells lose their ability to prove to produce healthy alpha-synuclein?
Cambridge University protein chemist Christopher Dobson says nature requires “that we live long enough to pass on our genes to our offspring, but it doesn’t really care after that. And so it’s evolved proteins that are stable enough and protected well enough by cellular defense mechanisms to last forty, fifty, or sixty years, but there’s not much margin of safety.”
Palfreman concludes by saying that he thinks four issues in particular are important for the Parkinson’s community. The first is improved delivery of l-dopa to the brain. Less than 10% of a typical dosage now reaches the brain due to the competition with other proteins to cross the blood-brain barrier.
The second is the placebo effect. The placebo effect is where a patient is given a dummy medication in a clinical trial of some other medication yet feels symptomatic relief.
Medicine Net defines the placebo response this way: “ A remarkable phenomenon in which a placebo — a fake treatment, an inactive substance like sugar, distilled water, or saline solution — can sometimes improve a patient’s condition simply because the person has the expectation that it will be helpful.”
The placebo effect could explain why exercise is such an important factor in Parkies having the feeling of well being after regular exercise sessions
The third is recognizing the importance of non-motor symptoms such as cognition.
The fourth is the need to develop personalized medicine. Palfreman defines this as a
“Collaborative culture of care where specialized professionals and engaged patients work together to try to achieve optimal outcomes”
Personalized medicine particularly intrigues me and has been something I have focused my recent efforts around. An example would be Parkinson’s Place in Sarasota, FL. It is an integrated facility with education, social activity, exercise and counseling for people in different stages of their disease. It involves teams of providers such as a neurologist, therapist, psychologist and legal experts.
See my August 27 post for more on this integrated approach versus the piecemeal efforts so common today in Parkinson’s treatment. The integrated will also be tested in Denver and two other cities with a government grant. I will write more about this effort in October.
Brain Storm is a compelling book. It is a must read for Parkinson’s sufferers.