JCPSLP Vol 18 No. 1Mar 2016

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

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.

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:


JCPSLP Volume 18, Number 1 2016

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