JCPSLP Vol 18 No. 1Mar 2016

Prediction and Prognosis

Enablers of a positive journey with primary progressive aphasia Agnes Summers and Jade Cartwright

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 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 syndrome that results in the gradual and irreversible decline of language function, with relative

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.

Thisarticle RECEIVED EDITORIAL review Keywords personal account primary progressive aphasia

Agnes Summers (top) and Jade Cartwright

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JCPSLP Volume 18, Number 1 2016

Journal of Clinical Practice in Speech-Language Pathology