Ahead of a conference on Parkinson’s disease, Dr Sean O’Sullivan emphasises the key role that support groups can play in the battle against the illness
In 1817, a 62-year-old London surgeon wrote a treatise that would become a medical classic: An Essay on the Shaking Palsy.
James Parkinson was the first to give a complete description of the condition that would later become known as Parkinson’s disease (PD).
About six decades passed before the great French neurologist Jean-Martin Charcot spoke of the ‘maladie de Parkinson’ as a name for the disorder characterised by tremor at rest, rigidity, characteristic facial immobility and particular disturbances of gait and posture. (J R Coll Physicians Edinb 2015).
Towards the end of the 19th century, PD had more or less reached its modern state of clinical recognition.
Two centuries later, as we mark the 200th anniversary of the publication of Parkinson’s essay, the cure for PD remains elusive.
Despite our progress in understanding its underlying chemical and pathological abnormalitie, this knowledge, unfortunately, has not yet led to a convincing treatment that can delay or halt the progression of the disorder.
Parkinson’s disease is a progressive neurological disorder caused by a degeneration of brain cells responsible for the production of the chemical dopamine, which is involved in controlling movement. Approximately 12,000 people in Ireland have PD, and because the disease becomes more frequent as we age, the prevalence is expected to double in the next 20 years as our population gets older.
The most common signs of Parkinson’s disease are tremors (involuntary shaking), usually initially seen in one hand, associated with stiffness and a slowness in movement.
Whilst it was these physical symptoms and signs that largely occupied James Parkinson’s earliest descriptions of the disorder, he also acknowledged the importance of “non-motor” symptoms in PD, with references to sleep disturbance, urinary incontinence, constipation, speech and swallowing problems.
These non-motor symptoms are increasingly recognised as major sources of disability for people with Parkinson’s (PwPs) and their families, with depression, anxiety and memory disturbances also being commonly seen.
Since 1817, there have been huge advances in our understanding of PD, in addition to the development of medications to alleviate the symptoms. In particular, the development of L-dopa in the 1960’s remains the gold standard of symptomatic PD treatment, but has been since supported by the development of other drug types.
Surgical techniques including deep brain stimulation can provide symptom relief to some individuals who are not adequately treated using medications. However, deep brain stimulation is currently unavailable in Ireland.
For many PwPs and their carers, the 200th anniversary of the first description is a source of huge frustration, in the absence of a cure for PD.
However, a major advance in helping PwPs, in addition to advocating for research to develop a cure, has been the development of support groups such as the Parkinson’s Association of Ireland (PAI). These organisations have successfully managed to dispel any previous stigma associated with the diagnosis of PD, and allow newly-diagnosed PwPs to realise that social, occupational and family life can go on.
The PAI members are a huge source of practical knowledge, social and emotional support, in addition to keeping members involved in research that can hopefully lead to a cure. My close links with the PAI have been instrumental in guiding how I try to improve my clinical practice to better serve the needs of PwPs and their carers.
As doctors trained in pharmacology, there is a danger we can become blinkered in our management of PD, using medications primarily, to the relative exclusion of non-drug supports. The importance of the multi-disciplinary team management of PD cannot be over-emphasised, and this is an aspect that the PAI can play a key role in.
I have been fortunate to work with Mr Ted Horgan, chairman of the Cork PAI branch and other members of the committee in co-founding the Annual Munster Parkinson’s Patient Conference, now in its fifth year.
The conference takes place tomorrow from 11am to 4pm at The Kingsley Hotel, Cork. Speakers include University College London Neurologist Prof Tom Foltynie, Senior physiotherapist Trish Clifford and Neurology Nurse Specialist Anne Grover from the Bon Secours Hospital Cork.
I am confident that by working together in this way, we can continue to improve the lives of PwPs and their families and find a cure to answer James Parkinson’s challenge of 1817, when he said: “But although, at present, uninformed as to the precise nature of the disease, still it ought not to be considered as one against which there exists no countervailing remedy. On the contrary, there appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped”.
Dr Sean O’Sullivan is a consultant neurologist in the Bon Secours Hospital Cork.
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