We are fast approaching the 70th anniversary of the Universal Declaration of Human Rights. Thus it seems timely that one of the speech and language therapy students working on BCPPA has been considering the right to communicate for people in our study. It is good to hear from students as they describe these clinical encounters and really reminds us of the importance of communication.
So here is the blog from our next star contributor Alice Stanes describing some of her experiences @astanes
The man stands up to greet us as his partner welcomes us in, we sit at the table. Throughout the course of the conversation his speech appears halting and difficult, at times he closes his eyes to speak and touches his head as he searches for the words. He uses hand gestures and points at things inside and outside the house to aid our understanding. He is animated and excited about something, he starts to hum a tune softly and speaks using single words and short, conversational phrases; ‘you know? ‘you see?’.
This would be my very first encounter with someone with Primary Progressive Aphasia (PPA). Along with fellow student Oli, we made the journey to visit this man with PPA and his partner to conduct a series of post-intervention outcome measures as part of the BCPPA project. Each visit involves a language assessment for the individual with PPA and a series of quality of life measures in the form of questionnaires; different questionnaires are used for the individual with PPA and their respective partners or carers. These measures, albeit incredibly useful for collecting data about their lives and experiences, and in documenting the challenges faced by those living with PPA, are long and can be emotionally challenging in nature. Some of the questions aim to measure the burden that carers experience whilst living with and caring for someone with PPA. This can be a really tricky thing to talk about.
In conversation with the partners I have met so far it strikes me that they are incredibly resilient; they accept change, sometimes loss, but with no apparent regret for their new role as carers. For them, life as they know it has also changed but the relationship with their loved one remains intact, as does the identity of their partner. It has really reminded me that as in all cases of dementia, it is so important to remember the person behind the disease.
This first visit is testament to this. This man’s story wasn’t clear at first, but a second time around with repeated gesture and the help of his partner who showed us a video she has taken on his phone, suddenly it makes more sense. The tune that he is humming is the tune he played on the piano, in a small church that he and his partner came across on a recent walk in the surrounding countryside. Of course! Because he is not foremost a man with PPA, but a musician, and an incredibly talented and successful one at that. Whilst PPA has stripped him of his abilities to construct full sentences, recognise words or communicate using language in the way he once could, in his case, where words fail, music speaks. This experience was important enough for him to share, whilst his partner helped to create a supportive and facilitative space within which he could communicate and tell his story.
When people ask what brought me to speech and language therapy, my somewhat non-linear career trajectory can make it difficult to explain (at least succinctly!). However, as I progress through my training I realise that simply put my passion is for communication and for supporting those who have lost their ability to have a voice, in whatever form that takes, and in supporting those around them to become experts in listening.
Since starting the BCPPA project my passion for the field has only strengthened and I find myself feeling increasingly at home. Despite crippling self-doubt, a LOT of the time, these real-life clinical encounters amidst a sea of academic challenges remind me exactly why speech and language therapy is so important, because everyone has a right to communicate and to be understood.