Aphasia on Zoom

During lockdown, I researched, produced, presented and edited my own 30 minute audio documentary on a subject that is personal to me.

As you are probably aware if you read this website or follow me on social media, my Mum had a stroke when I was 4 and has aphasia.

During lockdown, I have seen my Mum’s speech deteriorate because of the lack of practice and interaction with the outside world. The chat with the hairdresser, the conversation with the beautician, the natter at the checkout, they are all important interactions for my Mum. Those conversation opportunities have shrunk dramatically, her language skills have declined through lack of use, and her confidence has nosedived.

Lockdown has been incredibly difficult for all of us, but for stroke survivors who have aphasia, even more so. Prior to Covid 19, stroke survivors already reported social isolation and loneliness, according to The Stroke Association, but during the pandemic, these feelings have heightened even more, with 7 out of 10 stroke survivors feeling more depressed and anxious.

I wanted to raise awareness of this issue and aphasia, as most people don’t know about this common side effect of having a stroke. Every 5 minutes, someone has a stroke and 1 in 3 of those individuals will have aphasia according to The Stroke Association, so this is an issue that effects thousands of people across the UK on a daily basis. In this documentary, I interview my Mum, Paul, Bryan, and Nicky, about their strokes, what everyday life is like for them with their aphasia, and what lockdown has been like for them. I also interview Rosemary Townsend from Dyscover, the speech and language charity which my Mum has been attending for over 20 years, about the organisation and what aphasia is.

Listen to the trailer:

My debut documentary was aired on BBC Surrey and BBC Sussex on Thursday 1st April at 9:30pm. I was interviewed about it at 11:10am on BBC Surrey and BBC Sussex. I also put a package together on the same subject for BBC Radio 4’s World at One Programme and I reported on a live 2 way for BBC Radio 5live and organised a pre recorded interview for both documentary participants, Nicky and Rosemary.

Here is the documentary in full:

Their Stories

This documentary would not have materialised if it wasn’t for my Mum and the hardships she faces, she inspires me (and also surprises me with how stubborn she is).

Mum and I

My Mum, Chris Carter, had her stroke in 1996 at the age of 44. The effects of her stroke are that her right side of her body is paralysed, including her leg and her arm. Chris has severe aphasia and can form sentences but it takes time, although her level of understanding is very high and can follow complex story lines (loves a good TV series!) Chris is unable to read long passages. Since lockdown, she has lost some of her vocabulary as well as confidence with practicing speech and walking with her stick, she now heavily relies on a scooter. Despite this, she is a fierce woman and has recently got into painting in lockdown – and her art is incredible!

Rosemary Townsend – copyright to Rosemary

Rosemary Townsend is director of service for the charity Dyscover. She has been working at Dyscover for a number of years and she is always thinking of new and innovative ways for Dyscover to reach more people who need the support and community that Dyscover has to offer. In the documentary, she highlights what aphasia is from a speech and language therapist’s perspective, as well as someone who has worked with a number of individuals who have different levels of aphasia for many years. She refers to Dyscover as “finding your tribe”, highlighting that having a sense of belonging and value is so important in life and that is what Dyscover does, it creates a community of likeminded people.

Paul Brown

I think Paul Brown is the most upbeat positive person I have met in a while! Paul Brown, who is 48, had his stroke in January 2017. He is a police detective, soon to be retired, and even when he is off duty he is still keeping an eye on things he told me! His stroke happened from a supposed sneeze, the doctors told him a blood vessel could have popped as a result of this and he lost eyesight in one of his eyes. Before his stroke, he had never heard of stroke or aphasia and strongly believes that more needs to be done to raise awareness on strokes and aphasia. He is really grateful for the opportunity that Dyscover has provided him and he “grabs it” by two hands! Not suffering from depression himself, he forces himself to be busy to beat the high statistic of stroke survivors who are depressed and he raises his concern for others who might be. He has seen significant improvement with his own speech through Dyscover and thinks that the online sessions are wonderful thanks to modern technology, but is looking forward to when the face to face sessions return. He loves driving up to London and taking pictures of the city and having a chat with a passing tourist. Listen to his full story above.

00a38bBryan Smith

Bryan Smith is the epitome of strength! Bryan has had five strokes from 2007 up to 2015, however the stroke that left him paralysed and with aphasia was in 2013. This is because of a medical condition called Celebral Amyloid Angiopathy, which is a condition where proteins called amyloid build up on the walls of the arteries in the brain which increases the risk of stroke. His first two strokes were only 6 weeks apart and only effected his vision, but after his stroke in 2013, for 3 months he couldn’t say a word, which is when he suffered with depression. Over time, his speech gradually came back and now he tells me his main problems with speech are the fluency of words and the meanings of them too, as well as not being able to read long passages. His top tip for stroke survivors is to use card everywhere! He told me he has noticed how lockdown has effected his speech and he finds Zoom meetings difficult as it is easy to talk across people and you can’t rely on face expressions easily. Having said that, in the current climate it is to be recommended. He loves golf and recently played a round through Dyscover. Listen to his full story above.

Nicky Cuffe

Last but not least, the wonderful woman Nicky Cuffe, was the final participant of this documentary and who I had the pleasure of speaking with twice. (Please note, the audio above is only from the first interview). Nicky who is 62, had her stroke in January 2019 during the night. She isn’t sure of the reasoning, but she mentioned it could be due to her blood pressure. One of her daughters who works for the NHS, cared for her for 3 months after her stroke and she began to teach her every word again. With Nicky’s perseverance, she relearnt everything, which was frustrating at times after running two businesses, a house with three children and two dogs. She told me that she can’t read long sentences, struggles with retaining information and understanding complex concepts, handling monies and when multiple conversations are happening. She also highlights that the tone of male voices often is difficult for her to understand, especially American voices. She originally chose to not participate in Dyscover’s online sessions because of not being able to understand when multiple conversations were ongoing, however after our original chat months later, she began to attend the online zoom sessions as it highlighted a sense of community for her and it was nice to see everyone’s faces, even though at times, following the conversation may prove difficult. She expressed huge thanks to her children and her partner Andy for their support. She is a big fan of gardening. Listen to her full story above.

To find out more about Dyscover and the work that they do, click here.

The Stroke Association also has a support helpline called “Here for You”. Click here for more information.