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Wing Yee LEUNG, University College London Medical School. Apr 2009 "What are the challenges facing a new patient with Parkinson's Disease?" Diseases are loathed by mankind since the beginning of time, and for good reasons. A disease often encompasses individual sufferings, its effects on the lives of those around the sufferer and its impact, or indeed, its stigma on a larger scale. With advancing pathophysiological knowledge and medical investigations, diagnosing a disease has become easier and more uniform. However, though sometimes reassuring, the diagnosis itself can be immensely daunting, because of the individual’s expectations which are built upon current symptoms, existing knowledge regarding prognosis and the many uncertainties ahead. This essay explores the challenges a newly diagnosed Parkinson’s disease patient faces. Parkinson’s disease is a chronic, degenerative disease of the brain which manifests primarily as movement disorders. Besides motor functions, the disease also has an important impact on other neurological functions such as memory, perceptions, speech and language, as well as sleeping patterns and psychiatric functioning. It is thus not difficult to imagine the breadth and the complexity of the problems a newly diagnosed patient, or any Parkinson’s disease patient, would face. Without underestimating their complex intertwinement, but for the purpose of this discussion, these challenges are divided into three broad categories – biological, psychological and social. The cardinal clinical features of Parkinson’s disease are tremor, rigidity, bradykinesia or akinesia, and postural instability.1 A newly diagnosed patient may not have all of these symptoms simultaneously, but each individual symptom becomes a nuisance on its own to daily activities. Drinking a cup of tea, an activity which we take for granted, becomes a chore with tremors in the hands. Rigidity takes away the freedom to participate in some activities which the patient previously enjoyed. In a recent study, patients report that certain motor symptoms such as shuffling gait, festination, start hesitation and difficulty in turning have significant effects on their quality of life.2 The tendencies to falls also contribute to a relatively higher mortality rate in Parkinson’s disease patients, in particular those with a gait disorder.3 Other motor symptoms include fatigue, masked faces, micrographia and impaired coordination. Speech and swallowing may also be affected. Dysphagia can cause aspiration pneumonia, which is another cause of a relatively higher mortality rate in Parkinson’s disease patients.4 Hypophonia, monotonic speech and drooling are huge inconveniences on their own, and their impact on social activities and self-esteem will be discussed in later sections. Being a neuro-degenerative disease, individuals living with Parkinson’s disease may also suffer from executive dysfunction, memory loss, dementia, impaired senses and perception and disturbed sleeping patterns. The autonomic system may also be involved causing skin, urinary, gastrointestinal and sexual dysfunctions. Many of these significantly reduce a patient’s independence. Many features such as urinary and sexual symptoms may cause much embarrassment. In particular to newly diagnosed patients, their symptoms might have persisted for a long time and either been dismissed as the normal process of ageing or caused nonacceptance leading to marginalisation before a formal diagnosis was finally given. Alternatively, their Wing Yee LEUNG, University College London Medical School. Apr 2009 diagnosis might have been altered several times before one of Parkinson’s disease was decided. All of these add up to a huge amount of emotional stress for the patient. Depression is not an uncommon manifestation of Parkinson’s disease. It is found that at any given time, 20-40% of Parkinson’s disease patients have major depression.5 It results both directly from pathology in the dopaminergic neuropathways and indirectly from coping with the symptoms and stress of the disease. Not only is depression an important psychiatric sequelae affecting the wellbeing and treatment of the patient, a pessimistic outlook in life also greatly contributes to a reduced quality of life.6 Moreover, some symptoms of depression overlap with those of Parkinson’s disease such as bradykinesia, memory loss, impaired senses and disturbed sleep. This makes identifying depression in Parkinson’s disease patients even more difficult and in turn treatment not given early. As mentioned above, impairment in for example speech and swallowing, urinary and sexual functions can create an enormous psychosocial problem. Not being able to express ideas and indicate wants as fluently as before, not being able to control drooling in public, incontinence, persistent constipation and sexual dysfunction can be very frustrating and lower one’s self-esteem. Fatigue and the fear of falling take away the patient’s confidence in being on his own as well as in engaging in social activities. Hypomimia or masked faces can also be very debilitating and may cause misunderstanding in social situations. There may be a reduced understanding and enjoyment of life as cognition and perception become impaired. The perception of self-worth is also skewed as one loses dignity, either by aforementioned dysfunctions or by institutionalisation. It is often worsened by patient’s comparison with his or her premorbid social status and reputation. Parkinson’s disease is a chronic disease and the speed of its progression varies from patient to patient. Degeneration and progression of symptoms may take twenty years or more to be fatal. Although there is no cure for the disease, treatment regimes are aimed at symptomatic control. An important psychological aspect in this regard, especially for newly diagnosed patients, is their expectations of the years to come – the course and progression of the disease and symptoms, their management and prognosis, and making future arrangements. It is therefore important for healthcare professionals and carers to recognize that learning about and accepting an illness are difficult tasks on their own, as the patient has to be introduced to both the concepts of “chronicity” and of “degeneration” and their associated uncertainties ahead. Further psychosocial impact of the diagnosis of Parkinson’s disease is explored in this section. As mentioned at the beginning of the essay, a disease encompasses not only the individual’s sufferings, but also the effects it has on the people and environment around the sufferer. Certain symptoms such as monotonic speech, hypomimia, drooling, poor coordination, festination, incontinence, declining cognition and memory may be less accepted by others, causing isolation and affecting interpersonal relationship greatly. A newly diagnosed patient may no longer be able to work, which is both psychologically and financially very disabling. If the patient were the sole breadwinner of the family, there then involves a change of roles within the family, which would heavily affect the relationship dynamics.7 A not well-adjusted family could then develop further tension and problems within. There is additional stress and workload for the family or carers. The patient may feel like a burden to the family and Wing Yee LEUNG, University College London Medical School. Apr 2009 become withdrawn. For patients living alone, there may be anxiety about living on their own as cognition and mobility decline. Such patients may also develop a huge fear of falling because there is nobody to pick them up after. Often social services arrange independent carers for these patients, but this occasionally creates anxiety and suspicion regarding strangers entering the house, especially when there is a high turnover of carers. With regards to treatment, medications such as Levodopa together with peripheral dopamine decarboxylase inhibitors have proved to be very successful in treating symptoms of Parkinsonism since their introduction. However, no drug is a wonder drug. Besides the side-effects that come with the cocktail of medications a Parkinson’s disease patient is usually put on, such as nausea, gastrointestinal disturbances, confusion and vivid dreams, there are also some practical issues relating to taking medications. As the patient’s memory and cognition decline, taking many different tablets becomes a chore, and remembering to take the medication gets increasingly difficult. As the symptoms and disease progresses, a patient becomes more challenged in activities of daily living. He or she may also find it more difficult to make decisions – small or big – in his or her life. Hence another important challenge that a newly diagnosed Parkinson’s disease patient faces is making future arrangements and making his or her wishes known in the event that competence is lost. This can often be tricky as one can imagine. What determines a patient’s later values and decisionmaking could be his or her pre-recorded wishes now, could also be his or her expressed wants later on in the disease. There are legal and professional guidelines for healthcare professionals to follow in regards to such dilemma, but sometimes one wonders if nutritional support should really be withdrawn, as indicated in patient’s premorbid wishes, even when the patient is as happy as Larry the way he or she is. This is of course beyond the scope of this essay, but serves to remind us the difficulties a Parkinson’s disease patient faces when making such an arrangement. In conclusion, because of the nature of Parkinson’s disease – both chronic and degenerative, newly diagnosed patients have an enormous amount of anxiety. Having explored the biological, psychological and social aspects of the disease and hence the challenges of a newly diagnosed Parkinson’s disease patient, it is clear that management of the disease, and indeed the patient, requires multidisciplinary effort such as patient and family education, support group services, general wellness maintenance, physiotherapy, exercise, and nutrition.8 It is hoped that healthcare professionals would bear these in mind when delivering support to Parkinson’s disease patients, and of course, patients with other chronic conditions. (1500 words. PTO for refereces.) Wing Yee LEUNG, University College London Medical School. Apr 2009 References: 1. Parkinson's disease: clinical features and diagnosis. Journal of Neurology, Neurosurgery & Psychiatry. 2008 Apr; 79(4):368-76. 2. Quality of life in Parkinson's disease: the relative importance of the symptoms. Movement Disorders. 2008 Jul 30; 23(10):1428-34. 3. Mortality in Parkinson's disease: A 20-year follow-up study. Movement Disorders. 2009 Feb 17; 24(6):819-825. 4. Clinical course and cause of death in elderly patients with idiopathic Parkinson's disease. Chinese Medical Journal (English). 2002 Sep;115(9):1409-11 5. Depression in Parkinson's disease -- a review. Acta Neurologica Scandinavica. 2006 Jan;113(1):1-8. 6. Effects of optimism/pessimism and locus of control on disability and quality of life in Parkinson's disease. Parkinsonism Related Disorders. 2009 Apr 9. 7. Living with Parkinson’s. Parkinson’s Disease Society website. http://www.parkinsons.org.uk 2009 Apr. 8. National Institute for Clinical Excellence guidelines - Parkinson’s Disease. 2009 Apr