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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
EPDA - European Parkinsons Disease Association
LIFE WITH PARKINSON'S
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Executive summary

Parkinson's disease

Parkinson’s is the second most common degenerative disorder of the central nervous system.

Parkinson’s disease is a progressive neurological condition occurring as a result of a loss of neurons in the brain. It was named after Dr James Parkinson, the London physician who first described the condition in his essay entitled The Shaking Palsy in 1817.1

Parkinson’s is the second most common degenerative disorder of the central nervous system. It has been estimated that, across Western Europe’s five most and the world’s ten most populous nations, there were between 4.1 and 4.6 million people over 50 years of age with Parkinson’s in 2005. This total is expected to double to between 8.7 and 9.3 million by 2030.2

The mean age of onset of Parkinson’s is approximately 60 years. It usually occurs in people over the age of 50 years, but can sometimes present in younger adults in their 30s to 50s (and rarely even younger).3

Parkinson’s is often associated with movement problems, known as ‘motor symptoms’. The four cardinal motor symptoms of Parkinson’s are tremor at rest, rigidity, bradykinesia (slowness of movement) and postural instability. In addition, flexed posture and freezing (motor blocks) have been included among classic features of Parkinsonism.4  Diagnosis of Parkinson’s is made by clinical evaluation of the presence of a combination of the four main features.4

Parkinson’s is also associated with symptoms that are not directly related to movement.4 These are known as ‘non-motor symptoms’ and will be the focus of this booklet.

Parkinson’s can affect many aspects of daily living and may have a profound impact on quality of life.

Parkinson’s is life-altering, but it is not life-threatening.

Non-motor symptoms

While the motor symptoms have long been thought of as the fundamental symptoms of Parkinson’s, the non-motor symptoms, that are not related to difficulty with movement, are now increasingly recognised as common and important components of the condition.4,5

The non-motor symptoms are highly varied. They include neuropsychiatric problems (e.g. depression, dementia and repetitive or obsessional behaviour such as gambling), sleep disorders (e.g. insomnia and vivid dreaming), autonomic symptoms (e.g. bladder disturbances, sweating and erectile impotence), gastrointestinal symptoms (e.g. constipation, faecal incontinence and nausea) and sensory symptoms (e.g. pain and olfactory dysfunction affecting the senses of taste and smell), as well as fatigue, weight gain or loss and blurred vision. See pages 14–15 for a comprehensive overview of non-motor symptoms in Parkinson’s.5

Non-motor symptoms can occur at any stage of Parkinson’s. Some, including olfactory dysfunction, constipation and depression, can precede the motor symptoms by more than a decade.5,6 While it is not possible currently to establish a diagnosis of Parkinson’s based solely on non-motor symptoms, it is hoped that a better understanding of these disparate early symptoms might in the future lead to earlier diagnosis and treatment.7

Other non-motor symptoms, such as Parkinson’s dementia, occur more commonly in the later stages of the disease.8 Non-motor symptoms can come to dominate the more advanced stages of Parkinson’s and may indicate drug-related complications such as end-of-dose “wearing off” phenomena.9,10 They contribute significantly to disability and the associated costs of care, and have a severe impact of quality on life.5

Non-motor symptoms can impact the lives of people with Parkinson’s to the same or greater extent as motor symptoms, especially during the later stages of the disease. Unlike motor symptoms, for which there are treatments available, non-motor symptoms are often poorly recognised and treated, although effective treatments do exist.5,11 Recognising and treating these symptoms earlier and understanding their impact on daily routines can help to improve quality of life.

Communication between people with Parkinson’s and their physicians is essential to improving quality of life. Studies have shown that the two groups may not have a shared view of which are the most troublesome symptoms and that these discrepancies may hamper effective management.12

This booklet aims to raise awareness of non-motor symptoms amongst healthcare professionals, healthcare providers and those who influence how healthcare is delivered, as well as people with Parkinson’s and their families and carers. It uses clinical case studies from experts in the treatment of Parkinson’s, together with testimonials from people with the disease, to provide insights to treatment and how therapy may need to be adapted to reduce the impact of non-motor symptoms.

The case studies, based on the experience of people with Parkinson’s and their physicians, are complemented by two review articles. The first gives a comprehensive review of non-motor symptoms in Parkinson’s, while the second highlights how a multidisciplinary approach to Parkinson’s care – involving allied healthcare techniques such as physiotherapy, occupational therapy and speech and language therapy – can help provide coping mechanisms and physical therapy to reduce the impact of Parkinson’s symptoms.

 

References


  1. Parkinson J. An essay on the shaking palsy. Published by Sherwood, Neely, and Jones. London, 1817
  2. Dorsey ER, Constantinescu R, Thompson JP et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology 2007;68:334-386
  3. Tanner CM, Goldman SM, Ross GW. Etiology of Parkinson’s disease. In: Jankovic JJ, Tolosa E (eds). (2002) Parkinson’s Disease and Movement Disorders, fourth edition, Lippincott, Williams and Wilkins, Philadelphia, USA
  4. Jankovic J. Parkinson’s disease: clinical features and diagnosis. J Neurol Neurosurg Psychiatry 2008;79:368-376
  5. Chaudhuri K, Healy D, Schapira A. Non-motor symptoms of Parkinson’s disease: diagnosis and management. Lancet Neurol 2006;5(3):235-245
  6. Tolosa E, Gaig C, Santamaría J, Compta Y. Diagnosis and the premotor phase of Parkinson disease. Neurology 2009;72:S12-S20
  7. Chaudhuri KR, Yates L, Martinez-Martin P. The non-motor symptom complex of Parkinson’s disease: a comprehensive assessment is essential. Curr Neurol Neurosci Rep 2005;5:275-83
  8. Antonini A. Non-motor symptoms in Parkinson’s disease. Eur Neurol Rev 2009;4(2):25-27
  9. Stacy M, Bowron A, Guttman M et al. Identification of motor and non-motor wearing-off in Parkinson’s disease: comparison of a patient questionnaire versus a clinician assessment. Mov Disord 2005;20:726-33
  10. Stacy M, Hauser R, Oertel W et al. End-of-dose wearing off in Parkinson disease: a 9-question survey assessment. Clinical Neuropharmacol 2006;29:312-21
  11. Poewe W, Hauser R, Lang A for the ADAGIO investigators. Rasagiline 1 mg/day provides benefits for non-motor symptoms in patients with early Parkinson’s disease. Neurology 2009;72(11 Suppl 3):A321 (P154)
  12. Politis MD, Wu K, Molloy S et al. Parkinson’s disease symptoms: the patient’s perspective. Mov Disord 2010. DOI:10.1002/mds.33135