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Haran Sivapalan King’s College London, School of Medicine What are the challenges facing a new patient with Parkinson’s Disease? Introduction While clinically classified as a movement disorder, typified by a triad of resting tremor, bradykinesia and rigidity; Parkinson’s Disease (PD) may also cause psychiatric, cognitive, sleep, sensory and autonomic dysfunction. Indeed, it is this very multifariousness in symptom expression that presents physical, psychological and social challenges to patients in several aspects of daily life. The purported efficacy in treatment of patients by a broad multidisciplinary team, ranging from speech therapists to neurosurgeons (Trend et al 2002), also attests to the diversity of problems engendered by Parkinson’s disease. Conversely, the drugs used to give succour to these problems may themselves lead to other health difficulties. Furthermore, these are compounded by other shortfalls in the quality of healthcare provided to newly diagnosed patients. A new patient is thus not solely troubled by the motor and non-motor components inherent to Parkinson’s disease, but also by their interface with healthcare. Motor challenges The cardinal motor symptoms of PD are an intrinsic cause of profound disability. It is easy to envisage how a resting tremor may interfere with personal and instrumental activities of daily living. Yet, these motor symptoms may manifest and disconcert a patient in more subtle ways; through falls, dysphagia, dysarthria, micrographia and hypomimia amongst others. -Falls Postural instability and gait abnormalities such as ‘freezing gait’ may cause recurrent falls in PD patients. Prospective studies suggest 70% of patients experience at least one fall a year (Grimbergen et al 2004). Consequently, falls are a serious source of both physical and psychological encumbrance for PD patients. From a mechanical perspective, protective arm movements are attenuated and erroneously directed in Parkinson’s disease. Adduction, as opposed to outstretching of the arms, during falls leads to a greater incidence of trochanteric hip fractures (Grimbergen et al 2004). Therefore it is not solely the increased risk of falling, but the graver sequelae of falls that are problematic to the new PD patient. Augmenting this, psychological challenges; specifically the fear of falls, may further restrict patient mobility. - Dysarthria Communication is critical in both clinical and non-clinical contexts, but this may be compromised by speech disorders in PD. Hypokinetic dysarthria comprises reduced voice volume, quality and inflection (Sapir et al 2008), properties which will negatively affect patient interactions with family, friends and carers. In a clinical setting a new patient may suffer difficulty in volunteering information to healthcare professionals (an eventuality also worsened by micrographia). A corollary of this is that healthcare professionals may themselves alter the information they impart to patients. Sensory challenges Non-motor features are also of salience in PD, impacting both by themselves and through the complication of motor deficits. The ‘motor’ nature of the illness may mean that sensory symptoms such as pain, paraesthesia and olfactory dysfunction are often ill-addressed. Other sensory elements include the prevailing ‘inner Haran Sivapalan King’s College London, School of Medicine restlessness’ of akathisia, which; when coupled with limited ability to move, may prove particularly challenging. - Pain The unpleasantness and distress that is definitive of pain forms another obstacle in the life of a new PD patient. A recent study of 176 Norwegian PD patients revealed that 83% were in significant pain (Beiske et al 2009). Inadequacies in the provision of analgesic medication worsen this phenomenon. Pain may result from five main mechanisms, all of which severely limit the patient’s mobility, compounding existing motor problems. Primary Parkinsonian rigidity, rheumatological disease or skeletal deformity may cause musculoskeletal pain. Nerve root lesions or peripheral neuropathy lead to radicular-neuropathic pain. Dystonic, central and akathisic pain may follow anti-parkinsonian drug treatment. The latter three pain types may have added implications in terms of reduced patient drug compliance. - Anosmia The complete loss of a special sense is a debilitating event. Anosmia, or the loss of the sense of smell, is thought to eventually affect 90% of PD patients due to neuronal degeneration in the olfactory bulb and anterior olfactory nucleus (Chaudhuri et al 2006). As an early symptom of PD, the anosmic new patient will inevitably have a restricted sensory and emotional experience of their external environment. Mental (Cognitive and Psychiatric) challenges A multiplicity of neuropsychiatric disorders may affect sufferers of PD, ranging from florid psychosis to mild anxiety. The superposition of mental illness upon physical illness is testing for patients and clinicians alike. Complexities in treatment may arise, as both symptom domains stem from neurotransmitter dysregulation. For instance dopaminergic agonists used to curtail motor symptoms may also instigate visual hallucinations. - Depression While depression may be a condition reactive to physical illness; it is highly likely to be an immanent component of Parkinson’s disease. A review has found that between 20% and 40% of PD patients suffer from major depression (Lieberman, 2006). This has various ramifications upon the new patient. Firstly, at the diagnostic stage, difficulty in distinguishing depressive symptoms such as anergia, apathy and anhedonia from motor symptoms means depression is often under-diagnosed. Secondly, these depressive symptoms are themselves a burden to a patient, causing perturbations in mood, sleep and cognition. The latter; as in Beck’s cognitive triad with negative views of oneself, the world and the future, may impair a patient’s ability to cope psychologically with the new physical challenges of PD. The obverse situation, whereby motor vacillations lead to depression and anxiety is also seen in PD (Lieberman, 2006). Finally, at a therapeutic stage, drug treatment of depression with tricyclic antidepressants, SSRIs and SNRIs may exacerbate the fatigue, insomnia and possible orthostatic hypotension already established in PD. - Parkinson’s disease dementia Depression itself is a risk factor for a Parkinson’s associated dementia syndrome that afflicts 40% of PD patients (Emre, 2003). This is largely a ‘dysexecutive syndrome’ involving difficulties in attentional and memory processing and executive functions i.e. Haran Sivapalan King’s College London, School of Medicine the planning, organisation and regulation of goal-directed behaviour (Emre, 2003). Clearly such fundamental abilities are essential in personal and instrumental activities of daily living. Getting dressed, for example, requires successful planning, visuospatial memory and temporal sequencing processes. If these are defective in the new patient, substantial disability will ensue. As with depression, issues of symptomatic overlap between motor and dementia-like syndromes leads to problems in diagnosis that may delay treatment. Sleep-related and dysautonomic challenges Parkinson’s disease presents challenges to patient by both day and night. Dysregulation of brainstem and thalamocortical sleep centres may cause REM (Rapid Eye Movement) sleep behaviour disorder, characterised by abnormal movements and acting out of dreams (Chaudhuri et al 2006). This may cause harm to both patients and their partners – possibly those largely responsible for the care of the patient. Throughout the day, excessive daytime somnolence will further encumber the new patient. Sleep may also be interrupted by bladder dysfunction, an autonomic feature of PD. Other dysautonomic characteristics include constipation, orthostatic hypotension and erectile dysfunction, each with unique physical and psychological implications. Challenges related to drug and surgical treatment The requirement to take daily medication with rigid dosing schedules may itself be daunting to the new PD patient. Exacerbating these anxieties, is the potential for side effects of anti-Parkinsonian drugs. Every year, 10% of those on levodopa therapy develop dyskinesias (Davie, 2008); a cause of considerable disability. Dopamine agonists may additionally cause hallucinations, fibrotic degeneration of heart valves and even pathological gambling (Davie, 2008). It is thus apparent that the side effect profiles of the myriad of utilised drugs pose a quandary in terms of accepting and complying with treatment. This will also apply to surgical techniques used to control PD, such as deep brain stimulation (DBS). Challenges associated with access to healthcare While the unwanted effects of treatment are problematic, an earlier issue may be the ease of access to these treatments in the first place. A large-scale survey issued by the Parkinson’s Disease Society (2008) served to highlight the gravity of this healthcare deficit. It surmised that 30% of patients were not given adequate information and medication on the disorder. Lack of understanding of the symptoms that afflict them will undoubtedly distress patients. Furthermore, over 25% of patients had never met with a nurse specialist, a team member critical in aiding a patient through the multiple burdens of the disease. The same is true of occupational therapists, speech and language therapists and physiotherapists, all of whom have had sub-optimal contact with PD patients. Pharmacological therapy alone is limited in its scope to assuage the mutli-factorial challenges posed by PD; and poor access to a mutli-disciplinary team will only serve to heighten these challenges. Conclusion This essay has served to highlight the multitude of symptomatic expressions in Parkinson’s disease and their diverse repurcussions on physical, mental and social wellbeing. The ‘new patient with Parkinson’s disease,’ however, connotes a heterogenous subset of people with respect to symptomatology and socio- Haran Sivapalan King’s College London, School of Medicine demographic variables. As a study of health-related quality of life in Asians with PD has shown, the challenges facing patients are contingent upon several personal, cultural and societal factors (Zhao et al 2008). Therefore, in concordance with a Health-Belief model of illness, the challenges faced by new patients differ significantly from person to person. References Beiske, A.G., Loge, J.H., Ronningen, A. & Svensson, E. (2009). Pain in Parkinson’s Disease: prevalence and characteristics. Pain; 141: 173 – 177. Chaudhuri, K.R., Healy, D.G. & Schapira, A.H.V. (2006). Non-motor symptoms of Parkinson’s disease: diagnosis and management. Lancet Neurology; 5: 235 – 245. Davie, C.A. (2008). A review of Parkinson’s disease. British Medical Bulletin; 86: 109-127. Emre, M. (2003). Dementia associated with Parkinson’s disease. Lancet Neurology; 2(4): 229 – 237. Grimbergen, Y.A.M., Munneke, M. & Bloem, B.R. (2004). Falls in Parkinson’s disease. Current Opinion in Neurology; 17: 405 – 415. Lieberman, A. (2006). Depression in Parkinson’s disease – a review. Acta Neurologica Scandinavica; 113: 1 – 8. Parkinson’s Disease Society (2008). Life with Parkinson’s today – room for improvement. Available at http://www.parkinsons.org.uk/pdf/memberssurvey_ fullreport.pdf. Accessed 24th April 2009. Sapir, S., Ramig, L. & Fox, C. (2008). Speech and swallowing disorders in Parkinson’s disease. Current Opinion in Otolaryngology & Head and Neck Surgery; 16: 205 – 210. Trend, P., Kaye, J., Gage, H., Owen, C. & Wade, D. (2002). Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers. Clinical Rehabilitation; 16: 717 – 725. Zhao, Y.J., Tan, L.C.S., Lau, P.N., Au, W.L., Li, S.C. & Luo, N. (2008). Factors affecting health-related quality of life amongst Asian patients with Parkinson’s disease. European Journal of Neurology; 15: 737 – 742.