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JCPSLP Volume 18, Number 1 2016 18
the importance of making changes gradually over time,
maintaining faith, spending time with family and friends,
drawing upon the camaraderie of others living with the
same condition, and finding ways to minimise stress to
build resilience and find new purpose. Agnes’ story also
highlights the important role that speech-language
pathologists play in encouraging and supporting people
living with PPA to identify their own personal strengths and
enablers, to tailor strategies, to set goals, and to find new
opportunities for meaningful engagement and participation.
Speech-language pathologists are encouraged to share
Agnes’ story with other people living with PPA and their
families to provide hope and to show how much is possible
beyond diagnosis.
Acknowledgements
Agnes would like to thank her husband Ken and speech
pathologists Jade Cartwright and Ashleigh Beales for their
support in planning and editing this manuscript.
References
Cartwright, J. (2015). Primary progressive aphasia: The
potential for change (Unpublished doctoral dissertation).
University of Western Australia, Perth, Australia.
Harciarek, M., Sitek, E. J., & Kertesz, A. (2014).
The patterns of progression in primary progressive
aphasia: Implications for assessment and management.
Aphasiology, 28(8–9), 964–980.
Le Rhun, E., Richard, F., & Pasquier, F. (2006). Different
patterns of Mini Mental Status Examination responses
in primary progressive aphasia and Alzhiemer’s disease.
European Journal of Neurology, 13, 1124–1127.
Medina, J., &Weintraub, S. (2007). Depression in primary
progressive aphasia. Journal of Geriatric Psychiatry and
Neurology, 20(3), 153–160.
Mesulam, M. M. (1982). Slowly progressive aphasia
without generalized dementia. Annals of Neurology, 11(6),
592–598.
Mesulam, M. M. (2001). Primary progressive aphasia.
Annals of Neurology, 49(4), 425–432.
learn how to do the job and not hurt myself. Together, we
have renovated our rental house. Although it is hard work it
keeps me fruitful and I sleep well after a hard day.
Our children and grandchildren are all enablers. Together
we have great times with a lot of laughs. Sometimes
they are upset, which is typical of human behaviour. I am
thankful for all of them and the care they show.
The grandchildren are darlings. I have many laughs
about what they say or do. One of my grandsons gave
me a LOVE sign. Teasing a little, I said, “Oh you love
me!” Expecting he would be embarrassed. Instead, he
confidently said, “We all love you, Grandma!”
One granddaughter will help me out if I can’t find the right
word or say it correctly, she will ask, “Grandma did you
mean…” Usually she is right.
Another granddaughter, who knows my favourite fruit
is rockmelon, potted up seedlings for me to plant in my
garden. Often the grandchildren ask me to work on a jigsaw
or play a board game. I usually lose. However, I accredit
myself because it is me who taught them how to play the
games. Also the grandies give me hints about using my
iPad.
10. You choose
The process of deciding what are my enablers are has been
very beneficial. At first, I wasn’t aware of strategies that
supported me and my speech. At times you may feel there
are too many instructions given or decisions made around
you, and feel you have lost your independence. For that
reason, it is important that you choose.
Each person will see some of the strategies suitable
and others not. When I was given a large list of strategies,
I decided not to take on all of them straight up. I intend to
make the most out of my retirement by choosing strategies
that suit me, and using forward planning. Now I can say,
“No!” to events I don’t feel confident about, and “Yes!” to
other activities or requests, it’s my choice and I am grateful
for that.
Ken and I appreciate my neurologist and my speech
pathologists, for their work. We have a brighter picture of
our future because of their skills and caring. I realise that
I need to commit to using the strategies that have been
provided for me.
Conclusion
I would like to thank Agnes for sharing her story with PPA
so eloquently and so openly, providing invaluable insight
into the steps that have enabled her positive adjustment to
a challenging and uncertain prognosis. Her outlook,
strategic competence, and courage are inspiring, showing
AgnesSummersisaretiredprimaryschoolteacherlivingwith
primary progressive aphasia. Jade Cartwright is a speech
pathologist and lecturer at The University of Melbourne.
Correspondence to:
Jade Cartwright,
University of Melbourne
email: