Parkinson's disease: waiting for the hope to cure a life sentence

My life changed on a cold, dark, rainy January morning in 2011. Worried about a modest tremor in my left hand, my doctor had referred me to a neurologist.

At the appointment, I was asked to perform various motor tasks such as rotating my hands back and forth. After 20 minutes of tests, the neurologist told me I had Parkinson’s disease. My symptoms were mild and confined to the left side of my body, but the malady would inevitably progress, and, in time, I would need treatment with drugs.

I left the hospital in a state of shock. The irony was that this wasn’t my first brush with Parkinson’s. Decades before, I had reported on the condition as a science journalist, generating two BBC Horizon documentaries and a book on the subject.

But to be frank, my journalistic familiarity with Parkinson’s disease did not initially help me to cope with the news that I actually had it. It took me more than a year to process my diagnosis – a year in which I engaged in a series of adaptive strategies.

There was secrecy: the only people I told during the first three months after my diagnosis were my wife and three children. There was denial. I questioned the diagnosis and consulted other neurologists. They confirmed I had Parkinson’s disease. There was self-pity.

And there was isolation. I didn’t reach out to other Parkinson’s sufferers. To the contrary, I wanted nothing to do with them. The fragile, bent, trembling figures I observed in neurologists’ waiting rooms saddened and angered me. Was this really who I would become?

A change of heart

But by the summer of 2012, I was thinking more clearly. Because there was no denying my condition, it made sense to embrace it. I threw myself into reading everything I could about Parkinson’s disease and speaking to neuroscientists and clinicians so that I could understand my predicament.

As a lifelong science journalist who had reported on this disease, I was better placed than most to figure out the state of Parkinson’s research and ascertain what kind of future I faced. In a profound sense, understanding Parkinson’s disease and finding a cure are now my journalistic beat.

I also finally reached out to people with Parkinson’s and discovered a community of courageous individuals with some truly inspiring stories. These include the former NASA astronaut Rich Clifford and Canadian Tim Hague Senior, who despite his illness won the reality show The Amazing Race Canada, a competition where pairs of contestants race across Canada.

A particularly inspiring “Parkie” that I was fortunate enough to meet is Tom Isaacs, a British surveyor who walked the 4500-mile coastline of Great Britain to raise money to start a major new charity – Cure Parkinson’s Trust, an organisation that today he runs.

There’s also former modern dancer and choreographer Pamela Quinn, who developed Parkinson’s disease at age 40. As she wrote in an article for Dance Magazine:

For anyone, learning that you have a serious illness is a shock. But for a dancer, having a condition that directly affects your ability to move is profoundly shattering.

But, in time, she came to realise that she could use her dancer’s wisdom to help herself and others.

If my left hand was in tremor, I learned to calm it by shaking it vigorously. If my left foot dragged, I practised kicking a soccer ball in a string bag to help it come forward. If my left arm didn’t want to move in a full range of motion, I swung my purse from arm to arm to wake it up.

Today, Quinn teaches these and many other tricks to Parkinson’s sufferers.

Hope for the future

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Can Parkinson’s be slowed, stopped, or even reversed? Can the disease be prevented before it starts, like polio and smallpox? Perhaps. As I write in my new book Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, this age of neuroscience offers hope for developing new treatments. Many scientists studying the human brain view Parkinson’s as a pathfinder disease – one that may be key to understanding the organ’s complexity.

The bad actor causing Parkinson’s, many researchers argue, is a common protein called alpha-synuclein, which goes rogue, forming sticky toxic aggregates that jump from cell to cell inside the brain, killing neurons as they go. New anti-Parkinson’s therapies targeting alpha-synuclein are about to enter clinical trials and I will be volunteering to participate in these crucial evaluations.

My diagnosis has forced me to explore the tension between my professional and personal lives. Journalists seek truths about the current state of scientific knowledge. But patients thrive on hope about advances on the horizon. So, whether or not this current round of trials turns out to benefit me, I find comfort in the belief that this disease will be vanquished one day in the not too distant future.

It’s sometimes said that a diagnosis of Parkinson’s is not so much a death sentence as a life sentence. The issue for the millions of people with Parkinson’s around the world is what we make of that life sentence.

Five years since my diagnosis, I am grateful that my impairments are still relatively mild. But increasingly I entertain dark thoughts about the future. While I can expect to live for a decade or more, it is virtually certain that my quality of life will diminish.

Like many, I will likely end up in a wheelchair, or, worse, suffer from hallucinations and dementia. We must all try and find the courage to live out our life sentences with as much joy and dignity as we can muster.

This article is adapted from Palfreman’s second and most recent book, Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease. He has also authored another book, Parkinson’s Disease: The Case of the Frozen Addicts.

Jon Palfreman does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond the academic appointment above.

Jon Palfreman, Professor Emeritus of Journalism, University of Oregon

This article was originally published on The Conversation. Read the original article.