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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