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Prediction and Prognosis
15
JCPSLP
Volume 18, Number 1 2016
Journal of Clinical Practice in Speech-Language Pathology
Agnes Summers
(top) and Jade
Cartwright
Thisarticle
RECEIVED
EDITORIAL
review
Keywords
personal
account
primary
progressive
aphasia
family members offering care and support. While sharing
one’s own experiences can be challenging and confronting,
such stories help to combat stigma, and demonstrate
that life goes on after diagnosis to provide inspiration and
hope. In this article, Agnes, a 58-year-old woman, shares
her personal experience with PPA. Her story identifies the
enablers and strategies that she has drawn upon to adopt
a positive outlook, to keep her mind active, to find new
purpose, and to stay connected with her family, friends, and
community following the diagnosis.
Agnes’ story
At the beginning of 2012, my husband, Ken, and I moved
to a country town, where I was appointed as assistant
principal. The job included four days of teaching and one
day of administration. Typically, those tasks needed
attention each day, interrupting my teaching.
After a few months of being very busy, I became
physically and mentally tired. Pronouncing or finding the
right words became difficult. I went to my doctor and she
organised for me to stay in hospital, with the instructions
to sleep and do nothing else. It provided me with an
opportunity to catch my breath and my speech improved.
Once back at work, the accepted and expected
workload continued and my speech problem returned.
Though I didn’t want to accept that I couldn’t successfully
work at that level, I went back to my doctor who referred
me to a neurologist. He organised a thorough investigation,
which went over five months.
Life changing experiences call for new strategies, so
our lives continue the way we want it. As one strategy to
others, I present my enablers of a positive journey with PPA.
1. Facing the diagnosis
Following the investigation, Ken and I met with my
neurologist to receive the results. The diagnosis was
primary progressive aphasia. The word progressive
shocked me. I remembered the struggles my mum had
after her diagnosis of Alzheimer’s disease.
I asked the neurologist “Is there something that I have
done to cause this?”
“No.”
I asked, “Is there something I can do to correct the
problem?”
His response was, “Nothing”. However, through a
referral to a speech pathologist, I’ve learnt to manage
my speech and to improve it.
In this article Agnes Summers provides a
personal account of living with primary
progressive aphasia (PPA). The introduction
and conclusion are written by Jade
Cartwright, a speech-language pathologist,
who worked with Agnes in a private capacity.
Agnes and Jade initially worked together to
reflect on the strategies that had enabled her
to adopt a positive outlook following her
diagnosis of PPA. Agnes then used these
initial notes to write her personal account.
The final product is a powerful piece with
significant potential to influence the practice
of speech-language pathologists, while
offering support to other people living with
PPA and their families.
P
rimary progressive aphasia (PPA) is a dementia
syndrome that results in the gradual and irreversible
decline of language function, with relative
preservation of other cognitive abilities for a period of at
least two years (Mesulam, 1982, 2001). PPA often presents
before the age of 65, during a life stage comprising active
family, vocational, social, and other community roles.
Although typically slow, different rates of progression have
been reported and the natural history of PPA has not been
well studied (Harciarek, Sitek, & Kertesz, 2014). Factors
such as a higher Mini-Mental Status Examination score,
moderate aphasia, and more fluent speech at the time
of diagnosis have been identified as possible predictors
of slower progression and independence in activities of
daily living (Le Rhun, Richard, & Pasquier, 2006). Given
the ubiquitous nature of language to everyday life, the
psychosocial impact of PPA can be significant. Withdrawal
from social interactions and avoidance of language use are
examples of coping strategies that may be drawn upon in
response to emerging symptoms (Cartwright, 2015; Medina
&Weintraub, 2007). Intervention and support services
for the individual and their family play an important role
in building resilience and helping those impacted by the
condition to respond proactively to language symptoms as
they emerge and evolve over time.
Personal accounts of living with a condition like PPA play
a vitally important role in supporting others with the same
diagnosis and providing insight to health professionals and
Enablers of a positive
journey with primary
progressive aphasia
Agnes Summers and Jade Cartwright