This is the way it is, for me, to have Parkinson’s in the early 21st century.

It’s morning and the night has passed. Inch by inch, centimetre by centimetre, my life force, my self, is being eroded and then, presto, the heavy veil covering my face slowly lifts. I know that I am slowly disappearing. The Brian Sherman you all once knew will be no more.

This cry from the heart was written some three years ago. It is the aftermath of a nightmare, literally and figuratively, and a low point in my battle with Parkinson’s disease, which has now extended over ten or more years. Remarkably for a progressive illness, I have improved, but the war goes on.

I can’t say exactly how it began. It’s not one of those clear-cut things, where you feel unwell, notice a lump or some other symptom, go to hospital for a scan and receive a definitive diagnosis. This condition – my companion, my shadow, the self I have become – crept up on me in subtle ways, masking itself under various guises, psychological and physical. It took its time, revealing itself slowly and in fits and starts.

It inhabits me now. My days and nights are shaped by my invisible adversary, which fills my life with its presence. It is all consuming. It is what nightmares are made of.

In my search for a diagnosis and treatment, I have left no stone unturned. The road I have been on, and continue to walk, is long, winding – looping back and forth – and challenging.

PD can be perplexing. Its manifestations may vary widely from individual to individual. Then there is ‘Parkinsonism’ and a number of Par- kinsonian ‘syndromes’ that share some of the symptoms, such as tremor and rigidity. Further complicating things, not everyone with Parkinson’s, myself included, has the classic tremor as a predominant symptom.

The holy grail of a test to settle the diagnosis – a brain scan or pathology test, for example – is yet to be found. Misdiagnosis or late diagnosis is common. It is only possible to confirm with certainty postmortem, by observing the substantia nigra – the ‘black substance’. This region, located deep in the brain, contains neurons that produce dopamine. In people with PD, the substantia nigra is depleted, and along with it, the dopamine that controls movement. I have read that by the time PD is recognised, the dopamine level in those affected has diminished by some 70–80 per cent. The disease, by some estimates, is thought to afflict some two or three per cent of the population and many millions of people worldwide.

Another aspect of my symptoms confounds the situation. Depression and anxiety, which I suffer, go hand in hand with PD. But these can also create PD-like symptoms in those who are free of the disorder. It’s a case of chicken and egg, and that perennial puzzle remains unsolved.

Adding to the complication, the course of the condition is variable and can be very different from person to person. While the destination is known, the precise details of the journey there, and its duration, are not.

This project, documenting my life with Parkinson’s, gives some comfort or solace. It will be a permanent record that bears witness to my experience. The story is one I feel somehow compelled to tell. It’s a very human thing to want to share. I feel it’s my civic duty to be open about my experience of this difficult journey in the hope that it may assist others with theirs. While the news from the frontline is not good, perhaps, it may create a sense of community with other sufferers. It might also give medical professionals an insight into the day to day lived experience of what it is to grapple with Parkinson’s, at least from my own personal perspective.

My account of PD follows on from my memoir, mapping out in much closer detail how I came to be where I am with my Parkinson’s, and tracing the ebb and flow of my days as I live them.

Like my experience, what I present here is somewhat fragmentary, a dossier of observations that I hope will build a collective picture of my life with PD. I have reconstructed as best I can my symptoms, how they appeared, and the long quest for diagnosis and treatment. During the process of writing, I have kept a diary of my days, which forms a running thread in this work, bringing the story into the present. Thoughts from family form a key part of the book, and their reflections appear at the end of each chapter. I think there is a value in openness, in showing frankly the impact of this disease on those close to me.

I reflect, too, on whether there is an emotional dimension to my physical malaise, and the fact that I now have this disorder. We all know the body and mind are connected. Did, perhaps, my past, and elements of grief and trauma in distant and more recent years, play a part in my PD?

My story is not one of redemption and deliverance from the all-encompassing clutches of my illness. It cannot be – unless there is some sudden miraculous breakthrough in treatment, which, to my knowledge, is not imminent. Clinical trials of various medical, pharma- ceutical, and surgical treatments are ongoing, but there is no cure on the horizon, as far as I know.

In the end, we each bear our battles alone, and this one does not end in victory.

Despite it all, I am aware of my great good fortune in life. I acknowl- edge I have the resources to temper the ravages of PD. And the fact remains that I am surrounded by love, from my close family and friends.

I imagine my grandchildren reading this account of my later life, perhaps decades from now, as they are in middle age or older age themselves. It will likely be a time when degenerative diseases are a thing of the long-gone past, like some medieval scourge that modern science has banished to the history books.

Through it, they will come to know the reality of their grandfather’s experience, for better or for worse. I can’t be anything but authentic. I offer them, and my other readers, my truth. There are moments of light, but the cold, hard reality prevails. This is the way it is, for me, to have Parkinson’s in the early 21st century.

––Brian Sherman, 2019