I S S U E S A N D IN N O V A T I O N S I N N U R S I N G P R A C T I C E
Coping with menstruation: understanding the needs of women with
Parkinson’s disease
Debbie Tolson
BSc MSc PhD RGN
Professor of Gerontological Nursing, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University,
Glasgow, UK
Valerie Fleming
BA MA PhD RM RGN
Professor of Midwifery, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University, Glasgow, UK
and Elgin Schartau
Mlitt RGN DN RM
Senior Lecturer, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University, Glasgow, UK
Submitted for publication 17 April 2002
Accepted for publication 5 September 2002
Correspondence:
Debbie Tolson,
School of Nursing,
Midwifery and Community Health,
Glasgow Caledonian University,
Cowcaddens Road,
Glasgow G4 OBA,
UK.
E-mail: d.tolson@gcal.ac.uk
T O L S O N D ., F L E M I N G V . & S C H A R T A U E . ( 2 0 0 2 ) Journal of Advanced Nursing
40(5), 513–521
Coping with menstruation: understanding the needs of women with Parkinson’s
disease
Aims. To understand how women with Parkinson’s disease (PD) experience and
cope with menstruation and associated gynaecological problems, and adjustments to
womanhood. This paper focuses on menstruation.
Rationale. Unique hormonal fluctuations are known to affect women with idiopathic PD, however, our understanding of the impact of these changes on daily lives
and opportunities for nursing support are limited.
Methods. Descriptive multiple case study design was adopted, and data collection
involved a variety of approaches. Including semi-structured interviews, conversational interviews, group interview, reflective diaries and creative writing. A flexible
approach was encouraged whereby consenting women chose how and when they
wanted to participate.
Findings. A total of 19 women participated, 17 were experiencing naturally
occurring periods. The majority had been diagnosed around the age of 39 years,
and at the time of study participants ages ranged from 34 to 56 years. Three of the
women reported no change in the experience of their periods following diagnosis,
15 reported worsening problems which in two extreme situations led to hysterectomy. During the monthly cycle PD symptoms were often exaggerated, medication effectiveness reduced and ‘off times’ increased. The period itself involved
high levels of pain, fatigue and sometimes humiliating experiences when self-care
was impossible.
Conclusions. This study offers a unique contribution to our understanding of the needs
of young women with PD, and suggests that health professionals need to look beyond
the mask of a disease associated with old age. The nursing profession has a responsibility to develop models of best practice to enable women of any age to be themselves
and to adapt to the rhythm of their hormones as they live and grow older with PD.
Keywords: Parkinson’s disease, menstruation, women, nursing, case study
2002 Blackwell Science Ltd
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D. Tolson et al.
Introduction
Background
The syndrome of changes associated with idiopathic Parkinson’s disease (PD) (Bulpitt et al. 1985), often give rise to
major health problems, which require individuals to make
social and personal adjustments. Parkinson’s disease is
commonly associated with old age, because prevalence rates
accelerate in people aged 60 years and over (De Rijk et al.
2000). Regardless of the age of onset, it is important that
consideration is given to normal age related challenges and
experiences that coexist with chronic disease. For women,
important age related occurrences include the menstrual
cycle, which symbolizes fertility and biological youth, and the
menopause linked to maturity.
Evidence is accumulating that unique hormonal fluctuations affect both pre- and post-menopausal women with PD.
The mechanisms involved are not fully understood (Quinn &
Marsden 1986) and consequently medical management, and
in turn nursing care is informed by an incomplete knowledge
base (Saunders-Pullman et al. 1999). Although PD has
stimulated much medically and treatment focused research,
Abudi et al. (1997) remind us that we must balance medical
advances in knowledge by developing our understanding of
how people experience the impact of their symptoms on
everyday living. The importance of understanding health
related quality of life issues is recognized within the ongoing
Global Parkinson’s Disease Survey (WHO 1998).
This paper selectively reports the findings of an in-depth
exploration of the experiences of women with PD in relation
to womanhood, menstruation and related gynaecological
problems (Tolson et al. 2001). The piece focuses on the dayto-day challenges associated with menstruation, the potential
of nursing to support individuals and the need to disseminate
best practice knowledge.
The size of the problem
There are few reliable data of global prevalence or morbidity
of PD in Europe, overall prevalence is estimated to be 1Æ6 per
population (WHO 1998). The European prevalence in persons aged 65 years and above is estimated at 1Æ8 (per 100
population) rising to 2Æ6 for those aged 85–89 years (de Rijk
et al. 2000). Although it is clear the size of the affected
population escalates with advancing age Anderson et al.
(1998) remind us that comparison between studies is often
limited because of variations in diagnostic criteria. This is a
particular problem when comparing global prevalence rates
of idopathic PD among younger people between countries
(Mutch et al. 1986).
The UK figures indicate that PD affects 1 in 500 people in
the general population, rising to 1 in 100 in the population
aged over 65 years and 1 in 50 people aged over 80 years
(Parkinson’s Disease Society [PDS] 2001). Possen et al. (2001)
claim that 5–10% of the population are affected before the
age of 40 years, however, findings of a London-based survey
by Schrag et al. (2000) suggests this may be an over
estimation. In Scotland, the total population of women with
PD is currently estimated to be 105, 20 are between the ages of
25–65 years (Information Statistics Division [ISD] 2001).
Literature search methodology
The search strategy commenced with scanning the following
databases, Medline, CINAHL, Biomed, Amed, BIDS and
Cambridge Scientific Abstracts using combinations of key
words (PD, chronic disease, women, younger women,
prevalence, epidemiology, hormones, periods, menstruation,
menopause, nursing). This search yielded a large volume of
medical and pharmacological papers. Internet searches located several interesting sites including a European Drug Site
(http://www.shef.ac.uk/misc/groups/epda/aim.htm), and an
education site for United Kingdom (UK) users (http://
www.parkinson.org/pdedu.htm). Hand searchers were
undertaken of newsletters, and other Parksinon’s Disease
Society ‘grey literature’.
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The UK Services for adults people with Parkinson’s disease
The care of people with PD is recognized to be a multidisciplinary concern, although the contribution of medicine
and drug management dominates literature (Thomas &
MacMahon 1999). Primary Care Physicians are the gatekeepers to specialist neurological services, and in the UK
concerns have been raised about low rates of specialist referral
for older patients (Glasgow Herald 2001). No literature about
referral patterns for younger female patients was located. The
role of specialist nurses is increasingly recognized within the
UK (Noble 1998), and it is usual that the Physician initiates
referral. In Scotland, the number of PD Specialist Nurses is
currently 11, with a small number of these nurses working
within developed roles in which they are both able to make
and receive direct referrals for selected aspects of care without
the involvement of a physician (Tolson & West 1999).
In Scotland, young women with PD may receive support
from a variety of groups including doctors, specialist nurses,
movement disorder specialists and PDS welfare officers.
Focus on women and menstruation
Throughout history menstruation has developed its own
peculiar, culturally determined symbolism (Vollman 1977,
Coutinho & Segal 1999, Laws 1990). Although, many
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521
Menstruation: the needs of women with Parkinson’s disease
Issues and innovations in nursing practice
generalizations can be made about menstruation, it has long
been recognized that a woman’s reproductive function
responds to an individual template, embedded in an intricate
feedback system.
Research into hormonal influences on PD is inconclusive
(Quinn & Marsden 1986, Session et al. 1994, Behl &
Holsboer 1999, Kompoliti et al. 2000) and surprisingly little
work has been reported that explores the personal dimension
and care implications of the experiences of women. Factor
(1993) reported a pharmocology orientated case study of a
38-year-old woman with perimenstrual worsening of PD
symptoms who derived some benefit from treatment with
acetazolomide. A medically focused survey of 352 American
women with PD and naturally occurring cycles concluded
that hormonally mediated changes in PD are a common and
important problem (Thulin et al. 1996). Thulin et al. reports
that for a quarter of each woman’s cycle that she can expect
to experience a deterioration in PD symptoms and medication effectiveness. Perimenstrual deterioration and postmenstrual improvement is reported in an unpublished UK survey
by Roy (1999).
Although the research literature does not capture the dayto-day implications of these pathophysiological changes
anecdotal evidence does offer insight. For example, letters
published by women, descriptions of single cases (Simmons
1997) and the stories shared by counsellors convey a
distressing set of problems. More objective research concerning lower urinary tract function has incidentally identified
menstruation management to be problematic for women with
PD (Gray et al. 1995), as have studies investigating sexual
dysfunction (Brown et al. 1990).
The study
Study aim
The study aim was to understand how women with PD
experience and cope with menstruation and associated
gynaecological problems, and adjustments to womanhood.
This paper focuses on menstruation.
Methods
Design
Because of the sensitivity and personal nature of the topic,
in-depth case studies were identified to be the method of
choice. The descriptive approach to case study was selected,
as it allows data to be collected from as many sources as are
considered appropriate to provide in-depth information
(Woods & Catanzaro 1988). Yin (1994) suggests that case
studies can stand alone (e.g. a single case study) or that
multiple case studies can be examined for similarities and
differences. Both interpretations are appealing, and we
undertook a combination of cross case comparisons and
exploration of unique phenomena.
Sample recruitment
A networking approach was used to identify potential participants from four outpatient clinics and 218 General Practices located in Central Scotland. Parkinson’s Disease Nurses
and Welfare officers from the PDS were also asked to circulate information packs to contacts in Scotland and Northern
England. Snowball sampling by participants was also
encouraged because of the taboos surrounding the topic, and
this was found to be the most successful approach (Delamont
1992).
Once a potential participant was identified, further information was sent about the study. Those who felt able to
participate arranged a convenient time and venue to meet
with the female Research Assistant. A consent form was
signed, and the woman was requested to consider how she
would like to participate. Suggested approaches included
semi-structured or conversational style individual interviews,
group interviews, reflective diaries and or creative writing.
All but one of the woman chose individual interviews, nine
taking part in second interviews. Two women were interviewed in the presence of their husband, one suggested that her
PD nurse be interviewed. Two friends selected a group
interview, four provided diaries (although six had agreed to
keep them), two poems, three newsletters, two newspaper
cuttings and two books were received. One participant who
lived a distance from the study centre, and entered the study
relatively late, chose to record her story on audio-cassette tape.
Sample
A total of 20 women were identified over a period of
6 months, one woman declined, as she felt unable to undertake interview. The remaining 19 fulfilled the inclusion criteria (confirmed diagnosis of PD, current or recent experience
of naturally occurring periods) and agreed to participate. A
95% response rate was achieved, which was surprising given
the intimate nature of the topic. One woman participated by
providing a poem but requested that descriptive information
was not reported, hence unless otherwise stated the tables
include data from 18 women.
The majority of the sample women had been diagnosed
with PD around the age of 39 years. Most had lived for some
years with early signs and symptoms prior to diagnosis. The
earliest age of diagnosis was 18 years, and at the time of
interview this women had 27 years experience of the disease.
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Two women were included who had had hysterectomies,
one over 10 years prior to interview and the other within
2 years of the interview. The decision to include them was
partly taken because of a slow initial recruitment rate and
partly because it was felt that their experiences would be
illuminating. The remaining 17 women had naturally occurring periods.
The ages of the participants ranged from 34 to 56 years;
mean age 47 years.
Ethical considerations
Approval for the study was obtained from the University
Ethics Committee and relevant Acute and Primary Trust
Ethics Committees.
Potential participants were provided with written information, and invited to contact the Research Assistant by
phone, letter or e-mail. If the woman considered that she was
eligible and potentially able to participate she received further
information. All participants were requested to sign a consent
form, and reassured that they might change their minds at
any time without redress.
At the start of each interview verbal reaffirmation of
consent to the use of a tape recorder was requested.
Participants were invited to ask that the tape be switched
off if at anytime they felt uncomfortable with recording.
On completion tapes, diaries and original written submissions were returned, archived or destroyed as requested.
Consent to quotation and use of specific pieces of creative
writing during reporting and dissemination was also
obtained. The provisions of the 1998 Data Protection Act
were observed.
Data analysis strategy: focus on menstrual issues
A member of the research team read each case, particularly
looking for data related to menstruation. Relevant data were
grouped together on a grid so that patterns and contradictions could be easily seen between participants (Miles &
Huberman 1994). In keeping with Yin’s (1994) strategy each
case was then analysed separately. One member of the
research team read all data pertaining to each case, searching
for themes, patterns and contradictions within the case. Cross
case comparisons were sought and where multiple data
sources were available for individuals these to were compared
in the quest for completeness (Yin 1994).
Several strategies were employed to promote the integration and verification of data from different sources at both
the group and individual level. These included:
• the development and cross examination of findings using
case summaries and simple data matrices,
• the identification of an individual’s consistency of message,
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• mapping of the style of expression and use of metaphor
during content analysis,
• the reading and analysis of the interviews by each member
of the research team and the discussion of meanings
therein.
Findings
The major sources of information about menstrual experiences were the individual interviews and reflective diaries.
Creative writing also provided rich data, and this section
starts with consideration of a poem.
A single case: a single poem
In terms of case study design it is recognized that this case is
incomplete given that the poem is the sole data source (Yin
1994). However, this poem serves to illustrate what can be
learned about an individual through an isolated piece of
creative writing.
I am writing this poem to you today,
Because I’d like to help in any way.
I have Parkinson’s, don’t know the cause.
But sure doesn’t like my menopause.
Most of the time I manage very well,
Considering I’ve had it for a seven year spell.
Then the time of the month comes along again,
I’ve finished my period, but the feelings remain.
Sometimes I’m slow and need a push,
My tablets don’t work, and I’m rather flushed.
I can’t turn over in bed at night,
But I never lose my appetite.
I’m giving HRT a go to see,
If my hormones will settle down in me.
I’d be pleased to help in any way,
To meet with others who feel this way.
I’ll battle on, fight Parky everyday.
God give me strength till cure comes our way.
Analysis of the poem
At first sight this poem may appear to be optimistic, with a
falsely bright rhythm. However, embedded within the language is a complex message depicting a state of inner turmoil.
This distressing and sometimes contradictory presentation of
opposing emotions (e.g. coping and despair) is typical of all
of the participant’s style of expression. Knowing the cause of
PD and finding the answer to the question of ‘why me’ seems
to be important, suggesting that she is clutching on to a vague
hope that somehow this knowledge will help her.
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521
Menstruation: the needs of women with Parkinson’s disease
Issues and innovations in nursing practice
She splits and tries to distance herself from the disease.
‘Parky’ is symbolized as an object to do battle with and fight.
It is something to be rejected and pushed away, and yet she
rationalizes that without a medical breakthrough this will not
happen. Her hope and rejection of ownership of the disease
somehow shields her. Parkinson’s disease does not belong to
her, but conversely she does feel that the PD tablets are hers:
they are her weapon against the intruder.
Her poem has many features and similarities with the
descriptions shared by other women, in particular with
similarities in the use of metaphor, reveals that psychological
adjustment has not been achieved and that she copes by
splitting away from this chronic disease (Diamond 2001).
Cross case comparisons
Influence of Parkinson’s disease on menstruation
Three of 18 women reported that there had been no change in
their periods since the onset of PD. The 15 others all reported
a worsening of their menses, in two cases resulting in hysterectomy. In an attempt to locate patterns and estimate the
magnitude of worsening a judgmental scaling system of the
severity of period problems was generated from the data. It is
important to note that this scale was created to identify
patterns of reporting that relied on recall and it is not
intended to be interpreted as an absolute measure. The following scoring system was applied to descriptions of periods
before and after the onset of PD provided during interviews:
1 ¼ normal period, no problems
2 ¼ pre-menstrual tension only problem
3 ¼ period fairly heavy
4 ¼ heavy
5 ¼ very heavy
6 ¼ worse than very heavy but less than severe
7 ¼ severe problems
A score of 1 indicates that the period was perceived to be
normal and not a problem, at the other end of the scale the
period was severe and perceived to be a major problem for
the woman. Figure 1 shows a bar chart of the scores derived
for 18 participants, comparing descriptions (scores) before
PD and after onset. On average the women scored 3 points
higher on the severity scale after the onset of PD. The four
women who experienced the greatest level of change in
their periods, from normal-no problems to severe problems
(1 increasing to 7) were among the youngest at the time of
disease onset. Mindful of the potential for measurement
error, it appears that none of the women experienced a
lessening of existing period problems. This finding contrasts
with Roy’s survey response, where one or two women
indicted a positive benefit and improvement in their experience of menstruation (Roy 1999).
One woman who previously had not had problems with
her periods said
…but I dread it, I dread menstruation, I dread the week before and
the actual first day. It is really horrendous. (M/1/22)
In the next extract a woman explained how her periods had
worsened, note how she waits for the pain killers to ‘kick in’.
Well, worse, it was just you know, I’m just lying on the bed
absolutely groaning, taking a couple of pain killers and praying for
them to kick in because in the middle of the night I would be up at
least once in the night to change. I can be very heavy at the beginning
and then it just trails away as quickly as it came on heavy. (D/1/7).
The heaviness of the flow is a common complaint and the
terms of expression suggest an intensity of experience that is
difficult to endure, for example, ‘you feel as though you are
draining away’. (H/1/1)
Diaries highlighted levels of fatigue not described during
interview. Women felt unable to think beyond ‘getting
through’ their period. On the first day or two of menstruation it appears to totally dominate them, physically they
are very disabled, feel wretched and describe a total absence
of energy. Gradually they recover, but their month is
punctuated with anticipation of these few days and the
cyclical pattern.
Figure 1 Severity of problems pre- and
postonset of PD. Series 1 ¼ pre-PD; series
2 ¼ postonset (with PD). Participant 1–18,
equates to A–R as shown in quotes.
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Influence of menstruation on Parkinson’s disease
Our data supports existing evidence that certain phases of the
menstrual cycle appear to exaggerate PD related problems:
3 Pain management;
4 Night time difficulties of changing sanitary protection;
5 Loss of independence;
The problems are summarized in Table 1.
Greater insight may be gained from these personal
difficulties
Oh definitely, the week before and sometimes used to get maybe like
a, my face would go a bit numb, the left side of my face would go a
bit numb. (F/1/15)
I mean I’d maybe flood, by the time I got to a toilet I was a bit of a
I can have a couple of days in the month, usually just about a week or
mess, you know, even with, you know. I use towels and because of
so before where I feel really good, really high, my Parkinson’s doesn’t
my mobility was bad at the time, the actual effort of getting my
bother me physically as much or mentally. Then I really plunge, for
trousers down to change myself, these things take hours, they take a
you know, a week before you’ve got the menstrual symptoms that
long time, to go and the towel, to wash myself, etc., etc. (J/1/24)
accentuate what you have with the Parkinson’s, I…you get relief
when you take your period and feel tired for a few days and then go
And when I had my period, if I was having a bad day, he (husband)
back into the cycle again. (J/2/1)
had to help me and that wasn’t very nice…and sometimes I would
leave a pad behind because I’d drop it sort of thing and couldn’t get it
The day I start a period, well, I can’t do anything. I don’t go to bed
picked up. So he didn’t like that aspect, which I understood. (K/1/2)
but I might as well because I just can’t do anything. I look dreadful, I
Although K did not dwell on these difficulties the interview
with her PD nurse gave insight into the humiliating consequences of not being able to mobilize when she needed.
The desire to maintain independence was strong. Unfortunately, on some occasions there seemed to be no alternative
but to accept the help of another person, which had a
detrimental effect on intimate relations. Only one woman
had knowledge of aids to promote independence which she
had identified herself, none had requested or received advice
from health professionals on problems associated with selfcare during menstruation.
feel dreadful, my movement all but stops. (M/1/22)
Practicalities of self-care
self-care and personal hygiene issues during menstruation are
taboo subjects that few women discuss. These aspects are
intimate, personal and embarrassing (Laws 1990). The
practical problems described by our sample fall into five main
areas:
1 Problems associated with the containment of heavy blood
loss;
2 Dexterity problems and the use of sanitary protection;
Table 1 A summary of practical problems associated with menstruation
Problem
Number women
reporting problem
Containment of flow
13
Comment
Many try to use combinations of tampons and towels, or double
padding. Leakage onto chairs and other furniture was most upsetting.
Finding adequate night-time protection was particularly difficult.
Slowness of movement limits self-care.
Dexterity problems
8
Manipulation of sanitary products can be very difficult and at times
impossible. Dropping of towels and tampons, particularly used
items, is distressing. Difficulty with adjusting clothing when trying
to use protection was a source of frustration and fatigue.
Pain management
7
Painful, heavy, cramping periods were reported. Most women used
over the counter analgesics in combination with rest, one took Evening
Primrose Oil and one increased her fruit intake prior to her period.
Nigh-time difficulties
5
Difficulties in self-care were exaggerated at night as PD drugs ‘tail
off’ and mobility problems increase. Pads often required to be
changed and fear of leakage resulted in a restless night.
Loss of independence
3
Husbands assisted three women to change sanitary protection, two
others described how they struggled, appalled with the idea of their
husbands helping.
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2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521
Menstruation: the needs of women with Parkinson’s disease
Issues and innovations in nursing practice
Reactions of doctors
Five of the woman who had reported severe dysmenorrhoea,
prolonged ‘off times’ and ‘medication failure’ considered that
their doctors did not take their problems seriously. Some rationalized that doctors did not know how to help them
and responded by ignoring the problem. Most accused
male doctors of normalizing period problems as part of
womanhood:
I found that when I had my periods my pills didn’t work the same
although the neurologist said that was a load of bull, but I don’t think
it was, I think it reacted with the tablets. (K/1/6)
…because he rarely treats people that are still having periods with
Parkinson’s, he doesn’t really know very much about it. and it was
something that I was just going to have to learn to live with as part of
my disease. Not a lot of help there! (B/1/24)
One participant was receiving the support of her GP to
experiment with her medication levels in an attempt to
improve experiences during her period, this was described
positively in terms of her empowerment.
Only two women had discussed their problems with their
female PD Nurse, describing the nurse as a ‘shoulder to cry
on’ rather than as a professional who would be able to help in
more tangible ways.
Discussion
The majority (83%) of the women associated the onset of PD
with a worsening of menstrual problems. Previous studies
such as Quinn and Marsden (1986), Thulin et al. (1996) and
Kompoliti (2000), focus on the consequence of oestrogen and
progesterone changes on PD. It is understandable that the
majority of PD research adopts this disease focused gaze, as
the quest for cure is the ultimate aim. However, this stance
has distracted attention from focusing on the person and
wider aspects of their ageing and related health. The
expressive language used by many of the women in our
small study suggests that such a disease orientation misses an
essential point: that they are individual women who happen
to have PD. They have not become the disease although they
have no option but to live and age with it.
It is of concern that over half of the women (n ¼ 11)
experienced considerable worsening of their period problems,
five stating that doctors did not take their problems seriously.
There was only one example of a woman being empowered
to identify a personal and hormonally responsive treatment
regime. The remainder of the women failed to report their
problems and anticipation of a negative or non-response may
deter some women from reporting in the first place.
The perceived lack of interest among some physicians when
problems were reported is worrying and may be because of a
combination of factors. Embarrassment may lead the woman
to minimize the problems she describes; hence the doctor may
not appreciate the impact of the problem. The possibility that
some men and women in positions of authority behave
oppressively when dealing with issues of menstruation cannot
be discounted (Laws 1990). Nor can the tendency of some
practitioners to delegitimize the knowledge and experience of
people who live with chronic disease (Paterson 2001). Ignorance of care solutions and a lack of sensitivity towards the
needs of young (premenopausal) women with PD may be
contributory factors.
It was perplexing that PD nurses, all female, were not seen
as a potential source of real help but only a sympathetic ear.
Our data do not illuminate this issue other than to hint
towards the fact that possibly women sense that the nurse is
conceptualizing their care needs in the same way that they do
older people with PD. Thus the actual stage in the women’s
life course is not a central issue, and in effect the nurse
possibly and prematurely projects her into a later stage of life
normally associated with a dependent old age. If this hunch
suggesting a type of inappropriate and premature ageism or
stereotyping is correct, then it would make an interesting
investigation in its own right. Bernard (1998) explores the
relationship between women caring for other women in
respect to ageing and old age offers a useful orientation to the
debate. She contends that there is discomfort in seeing an
image of your own ageing process reflected in the face of a
patient or may be, as one woman commented, the loss of
facial muscle control gives the look and lifelessness of an old
woman. Perhaps then the PD nurse unconsciously distances
herself from women with PD who are close in chronological
age to themselves and yet restricted by a chronic disease that
the nurse associates with the mask of old age (Nijhof 1995).
Hence, menstruation which symbolizes biological youth is
not in the fore of the nurse’s mind. If the woman senses this
distancing then this may act as a deterrent to the disclosure of
an intimate and embarrassing problem (Williams 2001).
Study limitations
Our sample of women includes 16 from Scotland and three
from England. There is no reason to believe that the sample is
systematically biased, in fact for Scotland 80% of the total
premenopausal population of PD women have participated.
In the absence of comparative data we suggest that the
physical experiences reported by our participants may typify
those of younger women with PD. Indeed each participant’s
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story resonates well with existing medical and pharmacological knowledge. However, it should be noted that our
sample comprised women of only Caucasian origin and it is
recognized that the perceptions and narratives of women
from different cultures may be at variance with our data.
Because of time constraints, dictated by resources, theoretical saturation cannot be claimed, although no new data
seemed forthcoming. It is recognized that had we been able to
continue our dialogue further information might have been
uncovered. However, as Charmaz (1995) notes, many people
do not want to reveal themselves in totality, and we suspect
that in some cases the women had shared as much as they felt
able to about this personal subject.
The diaries and creative writing illuminated perspectives
that were not discovered during interview. This highlights the
merits of triangulation, flexibility and adopting strategies to
empower participants to tell their stories in their own way. In
progressing our work it may be helpful to consider additional
aesthetic approaches, such as creative arts to facilitate story
telling (Leight 2002).
Implications for nursing practice
Needs associated with menstruation should be addressed
proactively for women with PD. During the ‘diagnostic stage’
of care (MacMahon & Thomas 1998), premenopausal
women should receive literature with sensitively detailed
information about known problems and care options. The
provision of information will reassure and empower women
to make informed choices.
Medication effectiveness should be considered and monitored over the monthly cycle and women should be given
information to help them to participate in decisions concerning drug regimes. Further research is warranted in this area,
in particular we would encourage research to examine how
‘off times’ can be limited during menstruation to enable selfcare both during the day and throughout the night.
Expert assessment should be undertaken in relation to selfcare abilities, and interventions to promote independence and
dignity should be offered. In particular concerning dressing
and adjustment of clothing, use of toilets and sanitary
protection. The potential of the PD nurse to offer expert
care should be considered along with the potential contribution of other specialists.
Women who report an increase in the volume of blood loss
during their periods or prolonged menstruation should be
monitored for signs of anaemia and treated accordingly, and
given advice on management of fatigue and diet.
Strategies should be developed to promote a greater
awareness among health professionals of the difficulties faced
520
by some young women with PD. Professional networking and
strategies to enable the sharing of best practice, which reflects
the voice of women, should be encouraged. Given the
relatively low number of women across the country this
may be facilitated by adopting a similar model to that of the
Scottish Demonstration Project currently being piloted at
Glasgow Caledonian University (Schofield et al. 2002). This
work promotes the pooling of expertise to delineate evidencebased best practice statements, which are developed in
partnership with users and disseminated in a variety of paper
and internet formats for users and professionals.
Conclusion
This study offers one of the few contributions which
examines menstruation among women with PD from the
perspective of their day-to-day experiences. We have demonstrated that a worsening perception of period problems is
common and their lives are dominated by the cyclical pattern
of their hormones, emotional exhaustion, physical fatigue,
pain, difficulties in self-care during menstruation and a
worsening of PD symptoms. Difficulties associated with
menstruation are more likely to be identified through
nonageist, person- and health-centred approaches to nursing
which are informed by best practice guidance. In this way
nurses will be more likely to offer appropriate therapeutic
support to young woman with PD and continue this support
through menopause and beyond. In other words let us not
accept the status quo which prompted one women, a young
mother and a wife to write, ‘I am made to feel like an old age
pensioner in all but name.’ (Participant A. Book 1Æ7Æ7).
Instead let us strive towards an enabling model of care which
allows women of any age to be themselves as they are now,
and as they age with this debilitating chronic disease.
Acknowledgements
The Parkinson’s Disease Society funded this study and we
thank them for their financial support and advice. Our
sincere thanks are extended to each of the women who shared
their stories and to everyone who assisted us to make contact
with potential participants.
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