Katie Honney
University College London Medical School (UCL)
What are the challenges facing a new patient with Parkinson’s Disease?
"Dealing with it is the operative word. I found myself at seven years not battling it. Not struggling
with it. Not suffering from it. Not breaking under the burden of it, but dealing with it."
- Michael J. Fox referring to his Parkinson's disease
Parkinson’s disease (PD) is a common neurodegenerative disorder characterised by bradykinesia,
rigidity and a resting tremor, as first described by James Parkinson in 1817. Although Parkinson
stated in An Essay on the Shaking Palsy that the intellect was “uninjured”, he himself noted that, “at
the very last, constant sleepiness, with slight delirium, and other marks of extreme exhaustion,
announce the wished-for release.”1 Although autonomic dysfunction, sleep disturbance, depression
and dementia are recognised symptoms of PD, their impact upon the patient has been relatively
neglected. Having discussed the challenges and concerns of patients with PD in numerous hospital
settings, this paper is founded upon patient views and concerns about their diagnosis. Therefore,
this essay will not only include the classical motor symptoms and treatment side effects but also,
and with perhaps greater meaning and recognition for the patient, the non-motor symptoms which
can challenge a newly diagnosed PD patient.
PD is caused by the loss of dopaminergic neurons in the midbrain, which results in a dysfunction of
the nigrostriatal system, producing alterations in movement such as tremor, rigidity, bradykinesia
and postural abnormalities. As these symptoms become more pronounced, patients experience
difficulty in walking, talking, or completing other simple tasks. PD is chronic and progressive, and
there is no cure. People with PD almost always show an excellent initial response to treatment with
levodopa, the dopamine precursor that has been the mainstay of therapy for 40 years, but this initial
response is typically complicated by the eventual development of side effects such as ‘on-off’ motor
fluctuations and dyskinesias.
Perhaps one of the most challenging motor symptoms of Parkinson’s is the associated “expressive
mask” (hypomimea). The reduced spontaneity, intensity, and fluidity of facial, bodily and vocal
expression jeopardises interpersonal interaction and quality of life for the patient.2 Tickle-Degnen
and Lyons examined novice and expert practitioners’ impressions of the personality of patient’s
with PD using video recordings of healthcare interviews. It was found that practitioners, especially
novices, had difficulty perceiving the ‘real’ person behind the mask, leading to failed
communication and misunderstanding. Such symptoms will inevitably create anxiety for newly
diagnosed patients as they face the challenges of living with the disease, and the subsequent ways in
which this may affect interpersonal relationships.
Whilst a decline in motor function will highlight new challenges for PD patients in their activities of
daily living, functional decline is also inextricably linked to the non-motor symptoms of PD.
Evidence suggests that over 70% of PD patients report symptoms consistent with one or more
neuropsychiatric problems. Low mood, depression, anxiety and the presence of hallucinations tend
to predict poorer quality of life after controlling for motor symptoms, for both the patient and their
caregivers.3 The identification of neuropsychiatric problems in patients with PD, and particularly in
new patients, is important because these problems are amenable to treatment, and a lack of timely
intervention may needlessly reduce quality of life.
Dementia and cognitive impairment are common in PD and have important clinical consequences.
In a prospective, community-based study, Hobson et al. found that the relative risk of developing
dementia in PD was five times that of controls4. The close relationship between extrapyramidal and
cognitive disturbances was further demonstrated in another prospective community-based study.
1
Katie Honney
University College London Medical School (UCL)
1028 elderly subjects without PD or dementia, but with mild Parkinsonian signs, had a higher risk
of developing dementia than those without such signs.
The prevalence of dementia ranges from 10-80% of patients with PD5. Its perceived “inevitability”
in the progression of PD causes the most concern for the patient and their caregivers as the disease
advances. A 20-year follow up study of 136 newly diagnosed patients with Parkinson’s showed
dementia to be present in almost every patient, even in those with a younger onset who did not
succumb to intercurrent disease.5 The consequences of dementia include associations with drug and
procedure induced hallucinations and psychoses; excessive day time sleepiness; loss of insight; poor
judgement; impairment of driving skills and visiospatial problems that contribute to an increased
risk of falls and fractures. Dementia adds substantially to the burden of disease for the patient,
caregiver and the community. The patient is not only challenged by the diagnosis of PD but also
with the potential for additional diseases to be incurred as PD progresses.
Cognitive impairment occurs even in non-demented early-stage patients with PD. Foltynie and
colleagues6 reported changes in patient’s cognitive profile already at this early stage of disease: one
subgroup had an amnestic type, another a fronto-striatal deficit and a third group had more global
cognitive impairment. This will inevitably affect the patient’s mood and attitudes, but relatives and
carers are also likely to note the dramatic changes in the abilities of their loved ones and this may
well have a negative impact on relationships.
Depression is also linked to reduced independence and quality of life for PD patients; it is an
important predictor of caregiver distress which may result in early institutionalisation. Depression
may be an understandable response to having to cope with a chronic debilitating disease, however,
it affects an estimated 30-40% of people with PD and is associated with reduced cognitive
performance and quality of life. In a convenience sample of 90 PD patients Nuti et al. reported
major depression in 21%, anxiety in 11% and panic disorder in 30%7. They also found generalized
comorbid anxiety and an affective disorder in 19% of this group. Treatment of depression in PD is
vital but challenging given that shared pathophysiology makes treatment of mood without
influencing motor or cognitive symptoms difficult.
Psychosis, characterized by the presence of visual hallucinations, which may be accompanied by
illusions and paranoid delusions, is a well-recognised disabling complication of treated PD.
Delusional disorders lead to hospitalisation and even suicide attempts and psychosis occurs in
approximately one third of PD patients. The possibility of experiencing such symptoms will be of
great concern to newly diagnosed PD patients and dopaminergic treatment is thought to contribute
to visual hallucinations, adding to the problem. Treatment options can become rather complex,
requiring careful titration of anti-depressants and the use of anti-psychotics with the least
extrapyramidal side effects.
Lower urinary tract symptoms and incontinence are prevalent in PD. Results from early studies
suggested that urinary dysfunction affects between 37% and 70% of patients8. This may arise from
the direct effects of the disease, a result of impaired mobility and manual dexterity or secondary to
the neurogenic degeneration. The most common form of incontinence in this group is detrusor over
activity, which is predominantly treated with anti-muscarinic agents. Several of these drugs have
been shown to be efficacious in ameliorating the symptoms of an overactive bladder; however,
given that the cholinergic system in the central nervous system exerts a major influence on
cognitive processes, in particular memory, cognitive dysfunction during treatment with nonselective anti-muscarinic agents is of growing concern9. Not only do urinary symptoms,
particularly urinary incontinence, bring about loss of dignity for the newly diagnosed PD patient,
but more pragmatic challenges can also arise. Those with non-obstructive, overflow incontinence
may require intermittent self-catheterisation. Furthermore, disturbance to the patient and their
2
Katie Honney
University College London Medical School (UCL)
carer’s daily routines are encountered through the use of bedside commodes and scheduled voiding
programmes in patients with significant immobility.
Sexual dysfunction is a frequent cause of dissatisfaction in patients with PD and has a multifactorial
aetiology; central and autonomic dysfunction, defective motor skills, reduced self-esteem and
comorbid psychiatric states. Human sexual function is complex and intertwined in every aspect of
life. Sexual activity is an important part of maintaining most relationships yet is also very personal
and intimate. Many patients are afraid to discuss such issues with their physicians (and vice versa),
and tend to accept them as inevitable accompaniments of their condition or as a natural result of
ageing. Such problems not only challenge fundamental human values but can also potentiate the
associated neuropsychiatric problems.
To receive a diagnosis of a chronic neurological illness is the beginning of a long journey into the
unknown—a journey that may begin in hope, pass through periods of elation and frustration, and
finally end in acceptance and resignation10 - “The worst day of this disease was the day I was
diagnosed. The best day was when I understood what it would mean for me. It gave me back a
sense of control in my life, and some power.” (Patient X) The challenges facing a new patient with
PD are widespread, ranging from disturbance in completing activities of daily living to some of the
more neglected non-motor symptoms which can result in poor quality of life and increased carer
distress. The importance of explaining the challenges of Parkinson’s disease to newly diagnosed
patients cannot be underestimated. Timely patient education and support will, at the very least, offer
some sense of control to someone facing the potentially devastating consequences of a body
unresponsive to one’s intent and inexpressive of one’s character.3
Reference:
1
Parkinson J. An essay on the shaking palsy. Sherwood, Neely, Jones, London 1817. Reprinted in Journal of
Neuropsychiatry Clinical Neurosci 2002;14:223-236
2
Tickle-Degnen L, Lyons K. Practitioner’s impressions of patients with Parkinson’s disease: the social ecology of the
expressive mask. Social Science & Medicine 2004; 58:603-614
3
McKinlay A, Grace R, Dalrymple-Alford J, Anderson T, Fink J, Roger D. A profile of neuropsychiatric problems and
their relationship to quality of life for Parkinson’s disease patients without dementia. Parkinsonism and Related
Disorders 2008;14:37-42
4
Hobson P, Meara J. Risk and incidence of dementia in a cohort of older subjects with Parkinson's disease in the United
Kingdom. Mov Disord 2004; 19:1043–1049.
5
Hely M, Reid W, Adena M, Halliday G and Morris J. The Sydney Multicenter Study of Parkinson’s Disease: The
Inevitability of Dementia at 20 years. Movement Disorders 2008; 23(6):837-844
6
Foltynie T, Brayne CE, Robbins TW, Barker RA. The cognitive ability of an incident cohort of Parkinson's patients in
the UK. The CamPaIGN study. Brain 2004; 127:550–560
7
Nuti A, Ceravolo R, Piccinni A, et al. Psychiatric comorbidity in a population of Parkinson's disease patients. Eur J
Neurol 2004; 11:315–320
8
Blackett H, Walker R and Wood B. Urinary dysfunction in Parkinson’s disease: A review. Parkinsonism & Related
Disorders 2009; 15:81-87
9
Kay G, Abou-Donia M, Messer W, Murphy D, Tsao J and Ouslander J. Antimuscarinic drugs for overactive bladder
and their potential effects on cognitive function in older patients. Journal of the American Geriatric Society 2005;
53(12): 2195-2201
10
Baker M, Graham L. The journey: Parkinson’s disease. British Medical Journal 2004; 329:611-614
3