Early onset Parkinson’s disease can not only be a disaster for mobility and movement control; it can also be a part of progressive cognitive decline. The Lewy-body dementia experienced by some people with Parkinson’s is a heart-rending progressive loss of cognitive abilities, akin to Alzheimer’s disease, although due to a different protein pathology. For many people with Parkinson’s this cognitive loss threatens a greater loss of control than their loss of movement. In Life in the Balance cardiologist Thomas Graboys expresses his fear about such loss of control with an arresting honesty. For him, ‘dementia is by far the most difficult of my clinical problems’. And he describes in his memoir how his dementia has affected all his relationships, from his professional role with patients, to his friendships, his family ties, and his relationship with his wife, whom he had just married at the time of his first symptoms.
The penultimate chapter of Life in the Balance is called ‘End Game’. It is one of the best discussions that I have read, of a person with dementia’s thoughts about euthanasia. Tom Graboys expresses the common unwillingness to be a burden, but also the terror of causing a load of guilt for friends and family that have helped him to die. There is the realisation that in his case his mind may give up long before his body is ready to. There is the fear that he will not recognise the moment to act until it is too late and he is no longer able to take decisions. And there is that fear of losing control. It is a brutally honest chapter which repays rereading.
Life in the Balance is a memorable addition to the library of illness narratives. The very act of writing this book, with long-time journalist friend Peter Zheutlin, was a laborious attempt to continue the professional contributions as a doctor which Parkinson’s had forced Tom to forego. His life as a doctor enables him to make some pertinent comments about what he expects and prefers in his clinicians – time, hope, understanding, and empathy. These come together as one of the thematic chapters. Other chapters are also focussed on particular themes: his difficulties in daily functioning, his relationships with family, the nature of friendships for people with progressive neurological disease, and the effects on his marriage.
The chapter on family is fortified by short contributions by each of his two daughters, their husbands, his step-children, and his older brother. It becomes clear how Parkinson’s and dementia affects all relationships, with closest kin no longer able to be completely honest, or struggling to avoid taking over physical activities or decision-making. Tom Graboys says that reading these contributions from his family was upsetting, since he came to realise how much his Parkinson’s affects everyone around him, like ripples travelling outwards from the entry point of the stone into a pond. His ability to participate fully in communication and conversation is profoundly changed, a loss which was obvious in someone who was previously so present. In particular, his dementia causes not just word-finding problems, but difficulties in concentrating on the current task, and even to follow the sense of an interchange.
This memoir must have been painful to write, both for Tom, and his contributing family and friends. Loss and shrinkage is present throughout. And although there are practical hints on how to manage this condition, like strategic napping, the overwhelming mood is one of sadness, summed up by Tom finding his wife Vicki standing at the kitchen sink, crying silently.
A moving and invaluable addition to the literature.
Graboys, Thomas with Zheutlin, Peter (2008) Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia, New York, Union Square Press
An audiobook is available for Life in the Balance, at: https://learningally.org/BookDetails/BookID/JH920
An interview with Tom Graboys in 2011 is published in the Memory Bulletin, and available here: http://www.tomgraboys.com/Graboys%20Interview_JHMD%20Spring%202011.pdf
He also published an essay for the Lewy Body Dementia Association, entitled ‘Finding Hope in the Midst of Despair’ (2012), available here: https://www.lbda.org/go/finding-hope-midst-despair-my-decade-parkinson%E2%80%99s-disease-and-lewy-body-dementia-thomas-b-graboys And at the Wiley Online Library, www.wileyonlinelibrary.com DOI: 10.1002/mds.25117
Tom Graboys died in 2015, aged 70.