I had a great friendship with my conversation partner (CP). In this article I reflect on how we shared everyday life experiences. Aphasia can affect much more than we expect.
Reflecting on the CP Scheme
After completing the Conversation Partner Scheme I can now sit down and reflect on the experience as a whole. I am not going to lie, the visits were tiring, but the feeling I got when leaving each session made it so worthwhile. There was no point going into this half-heartedly, you get out of it what you put in. I feel you need to immerse yourself in your partner’s life as much as possible to gain the best insights and learn the most from the experience. So this is exactly what I tried to do.
I came out of the scheme with a great bond and friendship with my CP. We both shared our lives with each other and I think this honesty and naturalness helped create a genuine and sincere friendship. We have planed to keep in touch and to go out on day trips in the near future.
Sharing the highs and lows
From visiting my CP for around six months I feel I have shared a lot of highs and lows with her. After a stroke you are given a completely different life to adapt to and learn to live with. The psychological impact of this alone must be indescribable. You no longer have the life you know and have lived for so long. Your cognition is still intact but you just cannot get the words out you want to say. The frustration is beyond anyone’s realm of thought until you experience it yourself. I feel very grateful to have had this opportunity with my CP and to have shared her journey with her. I have learnt so much from her and I hope I have shown her compassion and supported her in the best way I could.
Everyday tasks become difficult
I can only begin to imagine what it must be like to live after a stroke with right side numbness and severe expressive Aphasia. It makes me question how much I take for granted after seeing my CP struggle with mundane, everyday tasks that I do not even give a second thought to. For example have you ever thought about your ability to say “sorry” after bumping into someone? Seeing the immense relief of my CP after going into a shop and posting a letter it makes me realise how wide ranging an impact Aphasia has on a person’s life. It is so much more than not being able to sit and have a conversation with someone. It is answering the phone, paying a bill, going out on a bus, booking an appointment and keeping in contact with family.
I go away from this scheme with a new outlook on life.
- Never take anything for granted.
- Appreciate the little things. We are all so caught up in our very busy lives. Just take a moment to think what your life would be like if you couldn’t communicate.
- Treat other people how you would want to be treated.
- Do not get impatient.
- Do not think they are rude.
- Give them time and listen.
- Put yourself in their shoes.
Craig writes about his experience being a conversation partner to T who has aphasia. Craig has been impressed by T’s commitment to rehabilitation, and his determination to return to cooking. T says the conversation partner scheme helps him to open up and talk.
“Individuals have within themselves vast resources for self-understanding and for altering their self-concepts, basic attitudes, and self directed behaviour” – Carl Rogers, psychologist
When I first walked into my Conversation Partner (CP) T’s flat, welcomed by his tweeting budgies, his warm smile and the offer of a cup of tea, I was conscious about the importance of being myself. I was also mindful of how I was communicating (spoken words, body language, eye contact etc.) and the impact this may have on T’s impression of me.
When I recently asked T what he has learned from the CP scheme, he replied:
“Since signing up I have been lucky enough to meet students who have been genuine, enthusiastic and confident which has made me open up about things I would usually avoid talking about. This has helped me get through some tough times and has given me confidence as a person. I now share things with friends and family whereas before I was a brick wall that bottled things up”.
We meet up for a chat once a week and T has openly shared his remarkable journey of recovering from a severe head injury, and subsequent stroke. I have found his story both insightful and inspiring; In particular how his personality traits of resilience, dedication and sheer stubbornness has helped him to overcome huge obstacles. With his current physical disability, he is still learning and continuing to overcome daily challenges.
Having been a dedicated and successful chef all of his life, returning to the kitchen seemed like an unlikely prospect for T. Determined to regain his independence, T raced through his neurological rehabilitation programme, working closely with Physiotherapy, Speech and Language Therapy and Occupational Therapy to recover his skills to walk, talk and to carry out daily living tasks. T was discharged earlier than expected when the hospital captured him toasting and buttering a piece of toast on video camera.
T now uses some of the culinary skills that he remembers from his catering days, along with specialist adapted equipment, to cook at home. T aims to return to an industrial kitchen to work and is preparing to write a simplified step by step recipe book for people with disabilities looking to redevelop this life skill that we all take for granted. Meeting T has taught me that we all have skills and abilities within us that can be developed and drawn upon to achieve the unimaginable.
By Craig Loftus
The Listening Project, a short series of shows on radio 4 had a great episode today on aphasia and conversation partners.
It’s only short, so if you have a spare 5 minutes it’s well worth listening to this conversation between Anna and Jan, a lady with aphasia and her conversation partner.
“My heart, which is so full to overflowing, has often been solaced and refreshed by music when sick and weary.”
― Martin Luther King
In the early 1950’s, archaeologists unearthed what they believed to be the oldest song ever discovered. It was found within ruins of what is believed to be, the ancient Syrian city of Ugarit and dates back over 3,400 years! So the question is……why do we feel the need to create music?
As Martin Luther King explains above, music can console when times are hard, it can offer an unlimited avenue of expression, and even create a bridge between time through the undeniable waves of nostalgia.
When one form of communication is taken away from us, music can provide a means of expressing our emotions and connecting with others as the following extract from a speech and language therapy student, taking part in the conversation partner scheme, explains:
“We only had 5 minutes left now so I wanted to show a final video of a song that I thought J (my CP) would know, “house of the rising sun” by The Animals. As it turns out, I made a good choice. His wife came in very excitedly, she told me that they used to kiss in the back of J’s car when they were young to this song! It made them both smile, and it was very heart warming to see. They don’t go out much, but the way music can transport you is so powerful……I feel incredibly lucky to have music in my life. It is a phenomenal thing.”
So whether it be as a means of transporting you to another time, creating a bond with another, expressing your emotions, or simply because you can’t go another minute without having a dance, pop in that CD, place down that vinyl or get on that world wide web and enjoy as we have for at least the past 3,400 years.
by Matt Hill
Hello all Connect blog followers. You may have noticed a couple of changes happening to this blog in the last few days.
A group of speech and language therapy students are going to be taking over the management of this blog, and we’d love to use it as a space where people can share stories and ideas about Connect’s conversation partner scheme.
The theme of this blog will be how we learn together through our conversations. We’ll be posting articles every couple of weeks written by a mix of students, volunteers and people with aphasia who have taken part in a conversation partner scheme. We will be posting our first couple of articles on soon so watch this space for some great new articles on people’s experiences with aphasia.
We would love to hear your views on the blog, and if you have nay ideas for articles please add them in the comments section here, or email us on Listentolearnblog@gmail.com
Emily had a stroke in May 2012 and has aphasia. She has been coming to Connect since September 2012. This is Emily’s blog, written in her own words. She wants to share with other people what aphasia is to her, and to hear what others have to say.
I am a Doctor of Visual Culture Studies and a few months ago, I had a stroke.
I have aphasia and I have apraxia of speech. My ability to speak is not so much driven by my language, but by my ability to remember the words. My words are doing a quick run around in my head. More than that, it is quite feasible that I have Visual Cultural Studies, with a special emphasis on empathy.
Aphasia is not a communicable disease, but is matter finding the words of writing, reading and in conversation. I may have lost the talent, but I know it is there, after all I have letters after my name. Apraxia, is slightly different. I’ve lost the power of speech but I have “digital or motor planning disorders… or failure to comprehend simple commands” (Wikepedia). So in affect, their gibberish coming out of my mouth but, in my head it all makes sense.
Well, Let me just take you back two years.
One day in New Zealand.
One of days when you are just expecting to hear ever things normal, I was told I meant to have a stroke. There still was some unreliability and some questions whether I could finish my thesis, but inevitably, there were things needed to be rushed through. I had two years before I before my thesis:
”Only the darkness knows who I am. : Discourses on x-rays in the ‘shadow clinic’ and how visualising shadows contributes to the possibilities of aesthetic empathy in the perception of the body in x-ray imagery”.
Following that I sold my belongings, got myself back to UK and was up May 10 when I had a stroke. I had taken 5 months in the UK!
The day it happens….
It was a morning like most others…about 10 am. Certainly I had a turn, a certain something that is unlike anything else. My head went and my body went – I remember my finger to get to phone, or rather the phone not working. I was up off the table but I couldn’t move anywhere. My head was too difficult to move and I was curling into a ball saying: “Oh God, Oh God”. It was a rather pitiful image. Gradually I realised I could move again – I locked to everything and moved to Charing X. I took myself off on an Underground and when i got there…I said think I have had a stoke.
It was a long day. About 1.oo I phoned Dom. I had nothing wrong and was sent home.
Dom came in with Doctoral of Philsophy….it had come through there post. I told him I had thought I had had a stroke everything seemed to be ok. In the car, I got morose with him and he did not me to go back. Luckily, he told me it would better if I stayed there.
Gradually my humour came but suddenly I realised I wasn’t making much sense. Ask the night went on my brother and my sis in law, thought it was too much wine. I went the bed early and that night thought I should never say “Ned” (my nephews name) again.
The next day…I woke up and I couldn’t speak. My face was half there and my limbs were weakening.
A amblunce was called and I returned on Charing X.
Well, there is it. I was there for a month. During my time there I had a couple of very capable speech therapists who were good. Jenny and Steve were trojans. I remembered playing cards with Jenny….we kind of made all the rules because i couldn’t remember them. My family came around a lot – from bad rhymes with Tor, even worse rhymes with Tony….my days were an endless source of optinum entertainemt.
During this time I met Ben, my third brother, and wife Sindhu – there came to visit me and I went to stay at Ma’s house when they stayed there (Ma, was away on holidays). I went to stay with them for a couple of weeks of then off to Wolfsons.
Now I am taking part in lots of research into various aspects of aphasia. I visit Connect regularly and I am looking forward to being a befriender. Having finished my PhD, I am looking for that elusive job…
A blog post by Deborah Baker – daughter of Sharon Baker, a volunteer with aphasia who runs the Canterbury Drop-In
When my Mum first spoke of having a Connect drop-in centre in Canterbury like the one in London, I thought it was a super idea albeit one that would take years of planning, which is why I’m both surprised and delighted at how fast this dream of hers has come to fruition. With the help of Connect staff Alex, Nathalie and Martyn and friend Matthew Hickson (who has aphasia), the first drop-in session took place at the Umbrella Centre in Canterbury on Thursday 15th September and was a great success.
I thought my Mum would be nervous about being in charge, so to speak. But as we set off to meet the volunteers at the centre she was calm and collected. We met Nathalie, who had kindly come to Canterbury for the morning to show her support. We also met Betty and Minoo, two of the volunteers who attended the training at the start of the month. I was certain that as 10 o’clock approached Mum would start to get butterflies, but if she did, she never let on. She was ready with name badges, forms and biscuits to go with the tea and coffee. She had arranged beforehand to have the chairs set out in a circle to enable us all to circulate throughout the morning.
The first to arrive was George, a lovely man who had a stroke two years ago and still has trouble finding certain words. George found out about the meeting at the hospital where Mum had left some flyers the previous month. The second person with aphasia to arrive was Lal who hardly has any speech at all, yet remains able to show his positivity through his infectious smile. He was accompanied by his wife, Indu, who drove them to Canterbury all the way from the Isle of Sheppey. Third to arrive was Claire with her friend Maria. Claire had a stroke fairly recently and though her speech is limited, she has made great progress and continues to do so with the help of her friends and family. Last, but not least were Ian and his wife Valerie. Ian spoke about his three children and his work as a carpenter prior to his strokes.
The morning went by so quickly that each one of us was shocked when we realised that two hours had passed and it was time to wind up our conversations and say goodbye. It was great to speak to other locals about their troubles and triumphs and to share ideas about everything from speaking exercises to relaxation techniques. I am sure that everyone enjoyed the opportunity to talk to others about their experiences in a friendly environment and I don’t doubt that Connect Canterbury will go from strength to strength. Special thanks is due to the staff at Connect, the volunteers, all those who organised fundraising events to raise money for Connect Canterbury and of course to my inspirational Mum who had the vision, the perseverance and the dedication to make it happen.