JAN
ORIGINAL RESEARCH
Living with advanced Parkinson’s disease: a constant struggle with
unpredictability
Anita Haahr, Marit Kirkevold, Elisabeth O.C. Hall & Karen Østergaard
Accepted for publication 13 August 2010
Correspondence to A. Haahr:
e-mail: AHAA@nursingscience.au.dk
Anita Haahr MScN RN
PhD Student
Department of Nursing Science, School of
Public Health, Aarhus University,
Denmark, and
Department of Neurology, Aarhus University
Hospital, Denmark
Marit Kirkevold Dr. Ed. RN
Professor
Department of Nursing Science, School of
Public Health, Aarhus University,
Denmark, and
Institute of Nursing and Health Sciences,
University of Oslo, Norway
Elisabeth O. C. Hall MScN PhD RN
Professor Emeritus
Department of Nursing Science, School of
Public Health, Aarhus University, Denmark
Karen Østergaard DrMSc MD
Professor, Consultant
Department of Neurology, Aarhus University
Hospital, Denmark
Introduction
Parkinson’s disease (PD) is the second most common neuro-
degenerative disease worldwide (Collins et al. 2010). Its main
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JOURNAL OF ADVANCED NURSING
H A A H R A . , K I R K E V O L D M . , H A L L E . O . C . & Ø S T E R G A A R D K . ( 2 0 1 1 ) Living
with advanced Parkinson’s disease: a constant struggle with unpredictability. Journal
of Advanced Nursing 67(2), 408–417. doi: 10.1111/j.1365-2648.2010.05459.x
Abstract
Aim. This paper is a report of an exploration of patients’ lifeworld and way of
managing life with advanced Parkinson’s disease prior to Deep Brain Stimulation and
what they expect from life following this treatment.
Background. Parkinson’s disease is a progressive neurodegenerative disease, which
is initially well-treated with L-dopa. Living with Parkinson’s disease means living
with the experience of continuous loss of independence and self-esteem and unpre-
dictable ON/OFF phenomena. Thus, in the advanced stage of the disease, treatment
with Deep Brain Stimulation may become relevant.
Method. Eleven patients eligible for Deep Brain Stimulation were interviewed prior
to treatment. Data were collected in 2007 and analysed according to the hermeneutic
phenomenological methodology of van Manen, using the four existentials as analytic
tools.
Findings. Living with advanced Parkinson’s disease can be described as the experi-
ence of living with and managing unpredictability. The disease gradually took over,
and participants had to struggle with unpredictability on a daily basis. Themes in
relation to this were: The body – setting the agenda, Always a struggle to be on time,
Living in dependence and compromise – being a burden, and Living with restrained
space and changes in social life.
Conclusion. Parkinson’s disease leads to profound bodily restrictions. Living with
an unpredictable body affects all aspects of life, and nurses need to be aware of the
impact the disease has on the entire lifeworld, and how this may affect the way
treatment is perceived.
Keywords: Deep Brain Stimulation, hermeneutic phenomenology, interviews, lived
experience, long-term illness, nursing, Parkinson’s disease
features are tremor, bradykinesia, rigidity and postural
instability (Litvan et al. 2003). As the disease progresses,
motor fluctuations and L-dopa-induced involuntary move-
ments have a large negative impact on the daily life of
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patients. They often develop neuropsychiatric and other non-
motor symptoms, such as depression, anxiety, reduced
cognitive function, sleep disturbances, fatigue and autonomic
disruptions (Poewe 2008).
Initially, patients are well-treated with L-dopa, but after
5–7 years the effect wears off and they experience episodes of
ON-OFF phenomena, dyskinesia and involuntary movements
(Ostergaard et al. 2002, Thanvi & Lo 2004, Poewe 2006).
Since the late 1990s, an increasing number of patients have
received Deep Brain Stimulation of the subthalamic nucleus
(DBS) (Weaver et al. 2009). This is acknowledged as an
important treatment for advanced PD and is offered to
patients, who despite optimized medication, suffer from
L-dopa-induced dyskinesia and severe motor fluctuations
(Ostergaard & Sunde 2006, Voges et al. 2007).
The effect of DBS on motor symptoms is well-documented
(Krack et al. 2003, Schupbach et al. 2005, Deuschl et al.
2006, Ostergaard & Sunde 2006, Wider et al. 2007, Weaver
et al. 2009). These studies have shown a clinically significant
improvement in motor function and a profound reduction in
ON-OFF phenomena and dyskinesia, both initially and long-
term. Further, a number of researchers report improvement in
Quality of life (QoL) related to motor function (Just &
Ostergaard 2002, Lagrange et al. 2002, Troster et al. 2003,
Lezcano et al. 2004, Erola et al. 2005, Smeding et al. 2006,
Volkmann et al. 2009).
Patients may, however, experience neuropsychiatric symp-
toms, apathy and social maladjustment or altered body image
following DBS (Drapier et al. 2005, Schupbach et al. 2006,
Smeding et al. 2006). This could be a reaction to the sudden
improvement in motor disability (Berney et al. 2002) or a
side-effect of DBS, and there is a need to explore this issue
from a patient perspective.
Background
Living with Parkinson’s disease
The existing literature shows that living with advanced PD
strongly affects everyday life. A recurring theme is the
experience of loss, such as loss of independence and self-
esteem (Caap-Ahlgren & Lannerheim 2002), loss of control
(Van Der Bruggen & Widdershoven 2004, Bramley &
Eatough 2005), of movement (Habermann 1996) and loss
of future (Charlton & Barrow 2002). Another recurring
theme is unpredictability relating to shifting ON/OFF and
consequent difficulties in planning everyday matters (Caap-
Ahlgren & Lannerheim 2002, Van Der Bruggen & Widder-
shoven 2004, Bramley & Eatough 2005, Wressle et al. 2007).
In studies of QoL, the determinants of poor QoL have been
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Living with advanced Parkinson’s disease
found to be postural instability and gait difficulty, along with
mood symptoms, loss of independence, fear of falling,
unpredictable ON/OFF and dyskinesia (Schrag et al. 2000,
Muslimovic et al. 2008, Rahman et al. 2008, Montel et al.
2009).
Living with advanced Parkinson’s disease – a lifeworld
perspective
Living with advanced PD is likely to affect the entire
lifeworld. The four lifeworld existentials – lived body, lived
time, lived space and lived other – are part of every person’s
lifeworld, forming a unity and affecting each other (Van
Manen 1990).
The existential of the Lived body is linked to the fact that
we are always in the world through our bodies. We meet
people first and foremost through our bodies, and being
looked at often causes a reaction. This means that living with
bodily symptoms, ON/OFF phenomena and unpredictability
may have a profound impact on perception of the lived body.
Lived time is subjective time and refers to the individual
temporality of existence. We are temporarily situated in the
world, and the past, present and anticipated future are part of
how we perceive our being in the present. Thus, the
experience of loss of future and inability to plan things due
to ON/OFF phenomena will affect lived time.
Lived space is felt space. It is closely related to our
everyday existence – where we go and where we feel safe.
The atmosphere of a certain space can evoke different
senses and feelings, and distance can be felt differently
from the objective measure of space. Living with PD has an
effect on felt space. Insecurity, fear of falling or loss of
movement are issues that may have an impact on how
people with PD perceive space and the things and people
surrounding them. Therefore the existential of the Lived
other is affected.
Lived other is the lived relation, occurring as we meet other
people. We meet the other through our bodies and form our
impression of the other through their appearance. The
relation can be of different character, depending on the
situation in which we meet (Van Manen 1990), and for a
person with PD, bodily awareness and bodily restrictions may
alter relations with other people.
Knowing the profound impact PD may have on the
lifeworld makes it important to be aware of how DBS may
affect patients’ bodily experience and challenge the lifeworld
perspective as they know it. Insight into how life with
advanced PD is experienced prior to DBS, therefore, is an
important basis for understanding a patient’s precondition
for and reactions to treatment.
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A. Haahr et al.
The study
Aim
This paper is a report of part of a comprehensive study
investigating the experience of life among people with PD and
their spouses before and after treatment with DBS. The aim
of this study is to explore patients’ lifeworld and way of
managing life with advanced PD prior to DBS and to
illuminate what they expect from life following DBS.
Methodology
The study was designed as a hermeneutic phenomenological
study, influenced by the methodology of Van Manen (1990).
Hermeneutic phenomenological research is the study of the
lifeworld, that is, the lived experience as immediately
experienced and the meaning given to it.
Participants
Participants were recruited from the two hospitals in Denmark
that perform DBS. Patients eligible for DBS should have a
positive response to L-dopa and no signs of neuropsychiatric
disorders or dementia. All patients who were offered treatment
with DBS during the inclusion period was asked to participate
and all accepted. This gave us 11 participants – three women
and eight men. As this was part of a comprehensive study
describing the experience of life from a family perspective as
well, all participants were living with a partner. Mean age at
time of DBS was 60 years (range 47–67). Mean age at disease
onset was 46 years (range 30–55), and mean disease duration
was 15 years (range 7–29). Thus, the demographic data of the
participants were comparable to and representative of the
group of people with PD being treated with DBS, as presented
in other studies (Just & Ostergaard 2002, Lagrange et al.
2002, Ostergaard et al. 2002, Lezcano et al. 2004, Drapier
et al. 2005, Erola et al. 2005, Deuschl et al. 2006, Montel
et al. 2009).
Data collection
Data were collected through in-depth, audiotaped interviews
with participants, approximately 2 weeks prior to treatment
with DBS, in their homes and at a time of their choice.
Interviews were conducted between January and December
2007. An interview guide helped the researcher (AH) to
explore the four dimensions of the lifeworld (Van Manen
1990). The opening prompt was: ‘Please tell me in detail how
living with PD is affecting and has affected your life until
410
now’. This was followed by questions exploring aspects of
the lifeworld with regard to the lived body, lived time, lived
space and lived other. Throughout the interview, participants
were repeatedly encouraged to go into more detail in
describing their experiences.
Ethical considerations
The study was approved by the appropriate ethics committee.
A nurse who was known to the patients, but not related to the
study, asked to participate and gave oral and written
information about the study. They were given time to
consider participation before they gave consent. The first
author then contacted them.
Data analysis
Data were transcribed verbatim and analysed following the
three analytic steps described by Van Manen (1990) and
illustrated in Table 1. Initially, a holistic approach meant
looking at each interview as a whole, expressing the meaning
of living with PD in one sentence. In the following selective
approach, the aim was to highlight meaning units that
illustrated the meaning of being and living with PD. Accord-
ing to Van Manen (1990, p. 93): ‘In the selective reading
approach we listen to or read a text several times and ask
what statements or phrases seem particularly essential or
revealing about the phenomenon or experience being
described’. Finally, in a detailed approach, we aimed to
capture the meaning of the experiences as seen from a caring
perspective.
Rigour
Before and during data collection and analysis, we
consciously sought to hold our pre-understandings at bay
by making it explicit and being open to what the text revealed
(Van Manen 1990). We read the interview texts as a team,
and pre-understandings were challenged as findings were
repeatedly discussed throughout the analytic process. Simi-
larities and differences between participants’ descriptions
were systematically explored and included in the data
analysis and final development of findings.
Findings
Living with PD can be described as a journey in four phases
(Figure 1). Phases 1 to 3 represent the participants’ experi-
ence of living with PD over time and are presented in one.
Phase 4 describes life at present, living with advanced PD.
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JAN: ORIGINAL RESEARCH Living with advanced Parkinson’s disease

Table 1 Illustrations of the process of analysis

Citation Selective approach Detailed approach Theme

‘I go bowling two or three
times a week, and when I
come home at noon, we might
go shopping. That is if I am
not OFF. If I am OFF I will
not go shopping, but I will sit
down and be passive in front
of the telly or the computer.
Because I cannot move and
I have annoying cramps and
pains in my legs’
‘The night before... I have
poured a glass of water, found
a banana and my medication
and put it by the door, ready
to take. Usually I wake up at
7 and straight away I take my
medication and in within a
certain time it will work’
Living with PD is living with
the uncertainty of whether the
body will function or not
Living with PD is experiencing
having to wait for OFF
episodes to pass
Living with PD is experiencing
pains related to OFF episodes
Living with PD is being deeply
dependent on medication
Participants do anticipate that The body – setting the agenda
unpredictable OFF episodes
may hamper plans
Despite living regularly there is
no guarantee that plans will
succeed.
Participants have certain
routines or ways of enduring
OFF episodes and pain related
to being OFF
Certain routines around Always a struggle to be ‘on
medication is important to time’
have to make sure medication Medication time – living a fixed
is taken ‘on time’ schedule

PD, Parkinson’s disease.

The body is Perceiving Getting on Struggling with

acting funny a new life with life unpredictability

Seeking help, Learning to live Medication fails PD is controlling life

Figure 1 The phases of life with investigating with PD The body is The everyday is
Parkinson’s disease (PD). DBS, Deep Brain symptoms unpredictable unpredictable
Stimulation. Restrictions in life DBS is a last resort

This phase is presented in more detail to illustrate how the
disease has evolved through time, and is related to the four
lifeworld existentials. The themes represent experiences
common for the participants.
Parkinson’s disease becoming a part of life: learning from
and adjusting to a changing body
Participants had a long illness history of between 7 and
29 years and had gone through a dynamic process from the
onset of symptoms, through diagnosis and medical treat-
ment, to living a life where the disease gradually took
control of life, adjusting to an ever-changing body, and
aiming at maintaining meaning, independence and control
in everyday life.
The body is acting funny
In the beginning there was confusion. Something was wrong,
an arm that would not work, there would be a sore shoulder,
a feeling of tiredness or headaches. This was recalled as a
time of testing and trying different treatments, with a focus
on symptoms and the annoying fact that the body did not
work as usual. When asked to describe the experience of
getting the disease, several participants commented: ‘Do you
mean from onset of symptoms or from when I was diag-
nosed?’, showing that time from onset of symptoms until
diagnosis could last years.
Perceiving a new life
Getting a diagnosis was experienced as a relief. Symptoms
could finally be explained and treated, and the medication

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A. Haahr et al.
had an instant effect. On the other hand, the diagnosis caused
speculation about what the future would bring. Being posi-
tive became a way to deal with the situation, hoping and
anticipating for the best: ‘‘I sat down on a bench and thought:
‘this is shit’… then I agreed with myself that I had to be
positive. I am not dead, I have only got Parkinson’s’’.
Participants realized that they had to take the disease with
them for the rest of their lives. Some quickly joined the
patient association and felt comfortable with others in the
same life situation. Others focused on living life as usual, and
not doing too many activities related to having the disease.
When evolving in to the next phase, they were well-treated
and experienced a good period.
Getting on with life
Following diagnosis was a time where things went fairly well,
and PD did not require much attention as long as medication
was taken as prescribed. Participants went on working and
doing usual daily activities. In time, however, PD came on
‘stronger’. Participants became slower in their movements,
found it harder to concentrate, and were more tired after a
day’s work. Some maintained full-time jobs but others
worked fewer hours. All placed importance on presenting a
good piece of work: ‘I worked till I turned 60. So I stopped
working in a nice way… worked for 10 years [whilst having
PD]… there was nothing to say about my work. If I wasn’t
finished, I brought work home. You do that today, but it
wasn’t as common then… so I probably did some extra hours
to get things ready, because maybe you worked a little
slower’. The need for frequent medication and increased
dosage became evident, and it became more and more
important to get medication on time: ‘As I have to take
medication seven times a day, you need to keep certain times,
and then you come to accept that you have to stick to those
times within a margin of 10 minutes. You can almost set your
clock by it’.
Finally, the ‘taken-for-granted’ body ceased to be and in
the transition to the present condition, the disease made a
major impact on the body and all other aspects of the
lifeworld. Life was increasingly controlled by the disease, and
the medication was continuously adjusted. The decision to
accept DBS seemed easy to make. Several participants talked
of DBS as a ‘last resort’ and saw it as a turning point in life.
Struggling with unpredictability: aiming to stay in control
In the end, living with advanced PD was characterized by one
major concern: the challenge of controlling an unpredictable
body. Participants’ decision to make the most of their
situation, where unpredictability had to be dealt with on a
412
daily basis, was dominant. Three ongoing strategies were
identified as a way of managing life with the disease: being
positive was a way of keeping the motivation for sustaining
as normal a life as possible, being in control served the
purpose of minimizing the need for help for as long as
possible, and living according to a routine was both necessary
and a choice made for the purpose of managing the disease
and staying in control. However, PD gradually affected the
whole lifeworld and thus had an impact on all four lifeworld
existentials.
The body – setting the agenda
The disabling ON and OFF phenomenon was a major
problem. Not knowing how the body would act and react
hampered planning and preparation. Most participants felt
uncomfortable when they had profound symptoms in public
places, and the unpredictability was setting the agenda,
to various degrees, not only on the body but in everyday life.
When we go shopping downtown, locally… I say to my husband, I
don’t want to go at noon, because it is medication-time, and it takes
some time before it works … I will stand there like a statue unable
to move anywhere. People are looking strangely, they really are, and
I don’t like it. Even if people in town know that I am slow …you
really don’t feel good… I simply don’t want to advertise for the
disease.
The OFF episodes caused pain and muscle cramps, leaving
participants uncomfortable in social settings and making it
hard to engage in conversation:
When I go OFF….. Then my face ‘dies’. My mimic is gone and I am
kind of gone too, because I use so much energy standing the pain. The
pain attracts my attention so I am not that sociable when I am OFF.
An alien body. Loss of strength was experienced by most
participants and resulted in a changed body sensation that
affected both self-esteem and perception of identity. It seemed
strange that the body could function so differently during the
day and react so unexpectedly in various situations. Some
participants explained it as a ‘missing link’ between mind and
body: ‘It seems odd … when I go bowling, I can lift a bowling
ball that weighs about 16 pounds. I can easily hold that with
my fingers but I cannot, when I am worst, pull a 1000 g duvet
into place. That’s just the way it is’. Another person said: ‘I
must be dragged like an old moped…it seems so strange that
you cannot do anything … and then sometimes you can’.
Controlled by or controlling the body? The unpredictable
body had a great impact on social life. Participants dealt with
this in two opposite ways. One way was by having strong
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reservations about where and how far they would go, as they
were concerned about their physical ability. This resulted in
never knowing for sure if they could accept an invitation.
Another strategy was to refuse to let the disease control life,
and to aim to participate regardless of the body’s functioning.
When restrictions were profound this also affected spouses,
and participants were very aware of the strain they put on
their partners:
A lot of people, crowded places, noise and not knowing the
surroundings such as access to toilets, really make me anxious. Not
knowing if you need your wheelchair to get around… things like that
really makes you not want to go… and again that affects the family.
To some extent all participants lacked the ability to get
around, and no matter how little they wanted to, they had to
rely on help to go places.
Always a struggle to be on time
Participants experienced time as fragile as they never knew
when and how long they would be in control. By contrast,
things also had to be done at the right time, and this made
timing crucial. Time was both uncertain and unpredictable,
but yet so important to keep track of.
Medication time – living a fixed schedule. Each day began by
taking medication on a fixed schedule, and the whole day
depended on medication-time: ‘Today I live on pills. All our
life depends on it. What time of day is it, and what pills do I
need…all day, I need to think of when to take my medica-
tion’. Forgetting medication-time meant instant pay-back in
terms of immobility. Yet participants expressed the need to
engage in the now, and had to navigate between the need to
keep track of time and the need to enjoy the moment. Some
enjoyed the forgetfulness of being preoccupied doing the
gardening or being sociable, having a feeling of being able,
but the consequences could be serious:
I like to go to the seaside every day. I am never there for more than
half an hour from when I leave the house. And I could live with that,
if I only knew that I could trust time. Then it is no trouble. But I get
talking to people and forget everything about those rotten pills. And
suddenly… I am stuck.
Stuck in time – between rigidity and instability. Loss of
spontaneity, feelings of boredom and monotonous living
were also dominant. Due to muscle stiffness, activities took
longer: ‘Such a thing as being in a hurry does not exist. It has
to take the time it needs’. An aggravating slowness, combined
with the need for rest and time lost during OFF periods, made
participants feel stuck between the need to live in the present
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Living with advanced Parkinson’s disease
and the need for planning and handling life with a disease
that ‘lives a life of its own’: ‘It is awkward. And you cannot
plan that in 1½ hour you will be doing this and this, because
if the medication doesn’t work, whether it is too little or too
much, then you are not well. Everything falls apart. You get
an invitation – yes, I might come…right?’
Living in dependence and compromise – being a burden
Participants struggled to stay as independent as possible and
tried to minimize the strain on their spouses, friends and
families. The spouse was an important co-player in living
with the disease and patients made routines for when and
how the partner should help: ‘We have an agreement that
says that if I want help then I ask for it. But I will not get any
help fussing’. Another person said: ‘My wife loves to watch
films in the evening, so she wheels me into the bathroom. I
could do it myself, but it takes me some time, as I don’t have
a lot of strength in my arms. So we have made the compro-
mise that she wheels me out and then I do the rest myself,
even if it takes some time’.
Participants were aware that their spouses were limited
socially due to the PD. If going anywhere together, spouses
had to meet participants’ needs: ‘It hurts that it always affects
my wife, when she must go on her own, and really would
have liked me to come with her… sometimes I have felt it
wasn’t good, but went along anyway, and sometimes we have
had to go home again within an hour’.
Living with restrained space and changes in social life
As all participants in some sense felt restricted due to the lack
of physical ability and being dependent on help to go out, the
close physical surroundings became very important. The home
had the significance of being a safe place, yet it was difficult to
make use of the house because of inability to do things in the
house and garden. Having to move because of disease severity
was a frightening thought affecting their existential space: ‘My
home is an important place. I would not like to move. The only
thing that can be a problem is that we have stairs to the
basement…but I hope to live here for a long time’.
In a broader sense, the restricted space implied limited or
changed social relations and social life, such as loss of
holidays, having a selective social circle consisting of close
family, neighbours and old friendships, or making a shift to
spending more time with others in the same situation as
themselves. Participants seemed to divide into two groups,
one finding their existential space either by sticking to former
activities and interests, whilst others found their space in
being with others in the same situation as themselves.
All but three participants felt hampered by the fact that
their illness was visible to others, and this affected both their
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physical and psychological space. They stayed indoors more
due to feelings of insecurity.
Deep Brain Stimulation – what to expect?
It was evident that participants were uncertain of what life
with DBS would bring and what to expect: ‘Nobody knows
what happens after the operation, right? It is easier to relate
to taking tablets and then you can go on again, but we don’t
know after the operation… It is like a new day 1. Like when I
got ill – then life starts from there... so this will happen again
on the 19th, then life starts all over again…[laughs]’.
Participants expressed hope for a better and more stable life
which was not so dependent on medication. The wish to be
able to walk was very profound, and was seen as a way to
achieve other things in life: ‘I expect to be more mobile. To
be able to live easier…getting a higher quality of life. Then I
will be well off’. Another person said: ‘I think it will be
easier... that is the impression I get... I think so… some talk
of it as getting a new life.[laughing]… I don’t need a new life,
but an easier life wouldn’t be so bad’. Generally there was a
wish to be able to be more active. Travelling and going on
holiday abroad were things most participants wished for, and
quite a few hoped that they would come to play a more
active part in the life of their children and grandchildren. All
but one had heard of others having had the treatment, and
they all related to good examples when expressing their
expectations: ‘They [the doctors] say not to expect too much,
but I don’t know. I think it will be good. I know somebody
who has had it done and they are very satisfied, so why
shouldn’t I be?’
Discussion
Study limitations
Participants in this study were a selected group of patients
with advanced PD. They had had disease onset at an early age
and therefore co-morbidity might not have been an issue to
the same extent as in older patients with advanced PD
(Muslimovic et al. 2008). All participants qualified for
treatment with DBS, meaning that they did not suffer from
severe neuropsychiatric disorders or dementia, which may
have had an impact on findings. All were living with a
partner, and thus this study does not illuminate living with
PD from the perspective of being/living as a single person.
Finally, all participants had been offered treatment with DBS
when the interview took place, and the new prospects and
hopes for the future could have had an effect on how their
experiences were described.
414
As this was a hermeneutic phenomenological study, our
pre-understandings might have affected the findings. This
issue was carefully considered throughout the study through
ongoing open dialogue between us, in which our diverse pre-
understandings were challenged and gradually changed.
Living with Parkinson’s disease
The main finding in this study was the ongoing, never-ending
and increasing struggle with an unpredictable body which
invades all aspects of everyday life. Unpredictability was
found as a major issue in PD in several studies (Caap-Ahlgren
& Lannerheim 2002, Van Der Bruggen & Widdershoven
2004, Bramley & Eatough 2005, Wressle et al. 2007).
Unpredictability means loss of control and by that, loss of
independence. The body can no longer be trusted. The
person’s body, the ‘taken-for-granted’ body ceases to be, and
affects the spatial, temporal and relational dimensions of the
lifeworld (Marcum 2004). Marcum uses the analogy of the
body as a ‘broken tool’ to describe a body affected by illness.
The body can be seen as both strange and hostile (Van Der
Bruggen & Widdershoven 2004). This is in line with the
finding of an alien and strange body sensation among our
participants. As found in other studies (Van Der Bruggen &
Widdershoven 2004, Bramley & Eatough 2005), the journey
with the illness is a time where loss of function and abilities
have become increasingly prominent. We identified three
strategies which participants used to overcome this unpre-
dictability. Being positive was the most dominant coping
strategy, along with living according to a routine and being in
control. These can be seen as ways of regaining meaning in a
stressful situation (Benner & Wrubel 1989). Maintaining a
high level of independence and living with the illness as a part
of life have been found to be a main goal in various kinds of
long-term illnesses (Paterson et al. 2001, Kralik 2002,
Thorne et al. 2003, Caap-Ahlgren & Dehlin 2004, Kralik
et al. 2004).
Living according to a routine seemed both to be a necessity
and a choice made by participants to control the disease. It
can be understood as a way of maintaining independence, not
only related to help, but also to acknowledging and
minimizing the dependence on medication to maintain
mobility. Medication routines are known to be an issue in
life with PD (Van Der Bruggen & Widdershoven 2004,
Bramley & Eatough 2005, Williams & Keady 2008). By
sticking to fixed medication schedules, people with PD aim to
control the disease.
For our participants, life with PD so far had been a journey
of loss, constantly requiring them to adjust to a new life
situation. No 2 days were the same when it came to mobility,
 2010 Blackwell Publishing Ltd
JAN: ORIGINAL RESEARCH
What is already known about this topic
• Living with advanced Parkinson’s disease is living with
unpredictability and disease progression.
• Parkinson’s disease implies the experience of loss and it
affects physical, psychological and psychosocial aspects
of life.
• Deep Brain Stimulation improves quality of life related
to physical aspects.
What this paper adds
• In living with advanced Parkinson’s disease, the body
sets the agenda restricting life physically and socially,
and in time and space.
• People with Parkinson’s disease use strategies such as
living according to a routine, being in control and being
positive for the purpose of managing life with the
disease.
• Treatment with Deep Brain Stimulation is seen as a last
resort, a turning point in life, and patients are uncertain
of what to expect from the treatment.
Implications for practice and/or policy
• Healthcare professionals should be aware of how living
with Parkinson’s disease and living with an
unpredictable body affects the life of the individual.
• Knowledge of the individual illness history and how the
individual perceives life with Parkinson’s disease is
crucial for providing adequate care to patients in
relation to treatment with Deep Brain Stimulation.
and the fact that the unpredictable body permeated all aspects
of life also meant that relationships with spouses and friends
were affected. The spouse was an important part of living
with the disease, and participants strove to maintain an equal
relationship with their partners. Frazier (2000) found fear of
being a burden and dependency to be the worst disease-
related stressors with regard to psychosocial aspects, which
supports the coping strategies and efforts our participants
made to stay independent and minimize strain on partners.
The participants in this study had had a long illness history.
The past and the future can be said to provide the horizons
and to be the anchor of meaning for the present (Benner &
Wrubel 1989, Toombs 1990, Brough 2001). For the partic-
ipants, the past represented a history of living with a
progressive disease, gradually restricting their lifeworld.
DBS was seen as a last resort, giving new prospects for the
future, affecting not only the future but also the present.
 2010 Blackwell Publishing Ltd
Living with advanced Parkinson’s disease
Healthcare professionals need to understand the context in
which patients give meaning to illness (Benner & Wrubel
1989), acknowledge that living with advanced PD affects the
entire lifeworld, and to beware of how the unpredictable body
hampers everyday life, changes bodily sensations, restricts
space and alters social relations. They also need to understand
how anticipation of the future is affected by the individual’s
history and how life is perceived by the individual.
Conclusion
This study contributes to a relatively limited body of
qualitative literature about the impact of a common neuro-
degenerative disorder. When living with advanced PD, the
body sets the agenda. The unpredictable body is a major
concern which is always present in the life of patients. It
invades all aspects of the lifeworld, and thus care must be
given from a lifeworld perspective being aware that living
with PD affects not only physical aspects of life, but everyday
life in general. Furthermore, each patient has an individual
illness history and thus knowledge of how life with PD is
perceived and given meaning by the specific patient is crucial
for healthcare professionals caring for people with PD.
Healthcare professionals should be aware of how living with
PD and managing living with an unpredictable and changing
body affects the experience of life, both in relation to DBS
and in general.
Acknowledgement
We thank Susan Chapman, UCL Institute of Child Health,
London, for the English revision of this manuscript.
Funding
This study was supported by the Danish Nurses Organization,
The Novo Nordisk Foundation, The Danish Parkinson’s
Disease Association, Lønborg-Madsen memorial fund, The
League of July 2nd 1984 against Parkinson’s disease, The
Lundbeck Foundation, The Danish Medical Research Council.
Conflict of interest
No conflict of interest has been declared by the authors.
Author contributions
AH, MK and EH were responsible for the study conception
and design. AH performed data collection. AH, MK and EH
performed data analysis. AH was responsible for the drafting
415
A. Haahr et al.
of the manuscript. AH, MK, EH and KØ made critical
revisions to the paper for important intellectual content. MK,
EH and KØ supervised the study.
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