I have been listening to books on Audible for a while now, usually when I am walking or driving. Few have kept my interest like Jon Palfreman’s new book Brain Storms, The Race to Unlock the Mysteries of Parkinson’s Disease. Unlike other audiobooks, I rarely had to back track to find out what I missed while distracted by something else. The book was engaging, informative and written in language that a reader with no medical background could understand.
Palferman was diagnosed with Parkinson’s at about the same time that I was and at about the same age. He also seems to have had a similar trajectory in the progress of the disease. He is a medical science journalist, and in that role, he oftened covered scientific discoveries leading to treatments and cures of chronic diseases. Thirty years ago he produced a documentary film for Nova, The Case of the Frozen Addict, about drug addicts who had developed Parkinson’s like symptoms as a result of bad street drugs. He is also a professor of journalism at the University of Oregon. His diagnosis, like mine, initially led to denial, secrecy, depression and isolation. He was determined to hide the disease for as long as possible. I can’t imagine anyone shouting to the world that he has just had been diagnosed with Parkinson’s Disease. After all, the image of Parkinson’s conjurs up an elderly person, shuffling with a stooped back, dementia and an obvious tremor. This is not a disease anyone looks forward to having since we can only treat the symptoms. There is not yet a cure or even a guaranteed treatment to slow down the progression of the disease.
Through the book, Palfreman confronts that image and turns it upside down. He discusses the sea change that occurred when Michael J Fox set up his foundation to find a cure now. He interviews Parkies who have made it theirs life’s mission to confront the disease and live with it on their terms. One example includes dancer Patricia Quinn, who developed a dance program to counteract her symptoms and continues to live well many years later. He has also interviewed others who have deteriorated rapidly and even goes so far as to project what his future will bring as a result.
Palferman also talks abut the fascinating history of the disease, beginning with descriptions from the ancient Greeks, leading up to James Parkinson’s famous essay on the Shaking Palsy nearly 200 years ago. He talks about how treatments were developed, and even chronicles the descendents of a family in a small village in Italy who were essential in helping to discover genetic markers for PD. Because the book was just published, he goes into great detail on the latest research about repurposing drugs for other diseases that have been somewhat successful in reversing PD in limited trials. This is exciting news that has been talked about all summer. Because these drugs have already been FDA approved for other diseases, the approval process is shortened significantly, if researchers can get enough patients to conduct Phase III trials.
He ends the book with a bright future for those of us with PD as a result of the flurry of discoveries made in the last few years about PD and treatments for slowing down and ultimately reversing the disease.
And finally, this is a very personal story about living with Parkinson’s disease and how a chronic disease will change a person’s life forever. That change can be positive, which is something I have heard from so many people with Parkinson’s. Once we get throught the denial, we can move forward and live our lives fully.