Category Archives: Brain Injury

Talking Mats in Practice

Following on from my last blog introducing my journey with Talking Mats (TMs), I have described below two examples of my use of TMs in practice. I specialise in working with people who have had sudden onset brain disorders, such as strokes, brain injuries and other progressive brain disorders, such as Parkinson’s disease and dementia. I work in a rehabilitation hospital where we provide a service to the elderly and to a neurological rehabilitation unit.

Talking Mats has been an invaluable picture communication tool to facilitate communication with people who present with cognitive (thinking, memory) and/or communication (talking) skills as described in the examples below:

The first example of TMs shows how it can be used to get to know someone and find out what their hobbies and interests are.

This is Bob’s Talking Mat:
Topic: Indoors activities – likes and dislikes
Bob (*name changed) had a large stroke that affected the left side of his brain. This affected his thinking and talking skills. It also affected his walking and he was using a wheelchair in hospital. Bob found it difficult to engage in conversation. The Physiotherapist and I thought that TMs may be a way to help Bob tell us about himself. We also wanted to see how he responded to using TMs to see if this would help him to think about some goals.

We started with symbols that Bob would find easiest to understand, so we explored Bob’s hobbies. The topic we picked was ‘indoor hobbies’ – this was placed at the bottom of the mat. We asked Bob how he felt about different indoor hobbies encouraging Bob to place the pictures on the mat. Using a visual scale of like/so-so/dislike at the top of the mat, Bob told us he liked music, TV, snacks, and card games. He disliked reading, arts and crafts. He felt ‘so-so’ about pets, computers, chatting, cleaning, cooking, photographs, and relaxing. Using the information in his ‘All about me’ book filled out by his family and talking to Bob more about his likes, in particular music and TV, I was able to incorporate his music choices in our music group. Bob became very vocal in the music group, happily singing away to his favourite band! Bob enjoyed TMs and it was used successfully to help Bob set his goals. The picture symbols also helped Bob’s thinking, understanding and talking. The visual framework of his hobbies allowed him time to think, process and respond.

This is Ruby’s Talking Mat:
Topic: Management of domestic life
 Ruby (*name changed), a 92 year old, was admitted to hospital with dementia following a fall resulting in a fractured hip. She lived on her own with some help from carers. As a result of her dementia, her thinking and memory were affected. The dementia also caused her to muddle her words and she would talk about her pet ‘penguin’ meaning her ‘parrot’.

The hospital team were worried that Ruby may not manage at home on discharge from hospital and that she may not fully understand the risks if she chose to go home. The Occupational Therapist and I used TMs with Ruby to look at how she felt about managing her self-care and domestic life at home. Ruby was engaged in TMs, but it became apparent that her insight and awareness was impaired. For example, Ruby forgot she had carers to visit her and that her meals were prepared for her by the carers. The hospital team were also concerned about Ruby during the night as she needed help in the hospital to get to the toilet and she would not be able to do this without help at home.

The Social Worker and I worked together with Ruby using TMs to look at her capacity to make an informed choice about her discharge destination. According to the Mental Capacity Act, “individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand”.

We carried out TMs as shown in the picture above. The topic, ‘domestic life’, was placed at the bottom of the mat. The top scale at the top of the mat, ‘easy’ was placed in the left hand corner; ‘so-so’ in the middle and ‘difficult’ in the top right hand corner. Ruby felt that cooking, paying her bills, cleaning, shopping, laundry and money were difficult. She felt unsure about being able to make a snack and there was nothing she found easy. When we asked her if she wanted to add anything else to her mat, she said that she was worried about ‘somebody ringing the bell’; ‘falling over’; night-time – ‘being alone’.

The Social Worker and I carried out a ‘sub-mat’ to explore with Ruby other options regarding discharge from hospital. It was felt, given the level of her care needs in hospital, that a nursing home might be the safest option.

Sub-mat exploring discharge destination options including nursing home:
Topic: Nursing home positives and negatives
 The topic placed at the bottom of the mat was ‘nursing home’. The symbol options on the previous mat that Ruby felt were ‘difficult’ were used for the sub-mat. The top scale for this mat was ‘like’, in the top left hand corner, ‘so-so’ placed in the top middle and ‘dislike’ in the top right hand corner of the mat.

Ruby put the ‘eating’ symbol under ‘like’ as it meant to her that her meals would be provided and that she would be eating with others at mealtimes if she chose to. She liked that her laundry would be done for her, and she liked the fact that she would not have to worry about the shopping, cleaning and cooking, as this would all be taken care of by the nursing home. We discussed the concerns that she had about people ringing the bell at home and that she would not be alone at night time.

We gave Ruby a copy of her TM so that she could think about what we had discussed together. A few days later, Ruby called over the SLT and Social Worker on separate occasions when sitting in the ward dining room and said she was keen to ‘get going and look at nursing homes’. I felt that the visual framework of TMs had helped support her thinking, memory and understanding. It gave Ruby ‘thinking space’ to add her concerns of ‘someone ringing the bell’, and ‘being alone’ at night. The mats showed Ruby’s problem solving, such as her difficulties at home versus the benefits of a nursing home. The Social Worker and I felt that Ruby had capacity to make an informed decision regarding where she wanted to be discharged to from hospital. I am pleased to say that Ruby was very happily ensconced in a nursing home chosen by herself and her family.

Leila Paxton

For more information about this blog and foundation training (TMs beginners) please contact me via:
Email: leilapaxton@hotmail.com
Twitter: @leilapaxton

 

 

 

My Journey with Talking Mats

Talking Mats (TMs) I hear you say, is that a mat that talks?! And so begins my story of Talking Mats. Talking mats is an evidence-based pictorial tool developed by Dr Joan Murphy in 1989. Since its creation, it is used in the UK and worldwide.

What does Talking Mats do? It gives individuals with thinking and talking difficulties a voice. This means that it gives those with difficulties expressing themselves a medium to communicate: for example, to express thoughts, make choices, have a chat. Research has shown its effectiveness with individuals who have sustained a stroke, dementia or MND as well as adults and children with learning difficulties. It is also used with individuals who stutter and asylum seekers where English is a second language.

How do you use it? Firstly, I suggest to anyone new to Talking Mats that they enrol on the day’s Foundation Training to understand the theory of Talking Mats whilst gaining the practical experience on the training. A topic is selected from a core of topics and the individual is asked how they feel about aspects of this topic, placing the picture on the mat where they feel this applies to them. There is a top scale with a range of headings depending on the question asked. For example, see the picture below – the topic is ‘hobbies’ and the top scale is ‘like – so so- dislike’:

Talking mats can be used to explore a variety of elements including the individual’s insight and awareness, their goals, exploring their views, management of activities of daily living, facilitating capacity, and facilitating conversation. The complexity arises in the use of Talking Mats and the skill in asking the relevant questions. Initial mats, can often, lead to a ‘sub-mat’. More to follow on this with case examples in my blog next month!

I initially did my foundation training in London, run by Talking Mats, in 2013. Since that initial day’s training I have not stopped using Talking Mats! In November 2015, I travelled to Talking Mats HQ to train as an accredited trainer in Stirling, Scotland. The 2-day course was inspiring and reflective. Joan, Lois and Rhona brought out the best in us and gave us constructive feedback to continue our learning. Their hospitality and the beauty of Scotland left me feeling inspired and confident to deliver their foundation training. The course participants were teachers, SLTs, OTs and a social worker. In sharing each other’s videos, we exchanged views and ideas. I came away with ideas of using TMs as an outcome tool; and to explore using TMs in our groups – I had not considered this before. It encouraged course participants to reflect on their own communication skills in their videos carrying out Talking Mats, as well as how to teach the core principles of Talking Mats to others. I am now qualified to teach Talking Mats at foundation level (beginners). So far, I have run one course in the NHS and one independently. I have enjoyed teaching Talking Mats and incorporating my own experiences of using Talking Mats. The reflective process is also transformative for the participants who have attended my foundation courses. The use of video and reflective feedback enables changes in SLT practise. Feedback from participants included their use of TMs: using TMs symbols they were able to reflect on what went well and what didn’t. The ideas and the variety of videos shared by the group participants was just as inspiring for me as a facilitator, as it was for them. Ideas such as using TMs with carers to compare their views with their relatives and using a child’s TMs picture on the front of their SLT report or school report, for example.

I highly recommend the accredited training for those that have completed their foundation Talking Mats training and have experience of using Talking Mats in practice.

 

Leila Paxton

For more information about Talking Mats, please visit: www.talkingmats.com
For more information about this blog and foundation training (TMs beginners) please contact me via:
Email: leilapaxton@hotmail.com
Twitter: @leilapaxton

 

Finding meaning in therapy

As a speech and language therapist and researcher, Mark Ylvisaker inspires my work. Mark was both a speech and language therapist and philosopher, and someone who passionately devoted his life to working with people with brain injury. Back in 2007, he said “in the absence of meaningful engagement in chosen life activities, all interventions ultimately fail”. A phrase like this really resonated with me as a therapist. Therapy needs to be meaningful. However, it wasn’t until a few years ago when a Professor asked me “but what is meaning?” that I started to consider the importance of this term.

In our interactions involving people with brain injury the term “meaningful” is regularly used; meaningful goals, meaningful activities, meaningful roles, meaningful participation and meaningful engagement. But what I found particularly interesting to learn was that philosophers couldn’t agree on the definition of meaning owing to its complex, fluid and multifaceted nature. In fact, philosophers argue that meaning does not surrender itself to a definition. They do agree however, that meaning is comprised of three features: connectedness, coherence, and subjectivity. Connectedness refers to the linking of experiences so that they can be understood and interpreted. Coherence refers to a person making an evaluation of their life or experiences as making sense or being coherent. This is usually done within a bigger context that may include a goal, motivation or life at large. Both connectedness and coherence relate to meaningfulness, as a disconnected and fragmented (incoherent) life is considered meaningless. Subjectivity refers to the subjective experience of connectedness and coherence, as the experiences in a person’s life have no meaning unless they are meaningful to someone.

This started me thinking about how we as therapists create meaning for people with brain injury. Some people may have a notion of what is meaningful to them but need our help to connect and make sense of their experiences. Others have lost meaning in their lives so we need to help them find it again. Meaning can be derived in many ways, from multiple contexts (or sources). An activity or action alone cannot create meaning. It is the emotional response to those activities or actions and the link to a higher purpose, motivation or goal, which is important to the creation of meaning. As a therapist, I’m often left wondering how to do that for people with brain injury. A few years ago, I came across some research by Levasseur and colleagues (2010) who described contexts according to a person’s involvement in an activity (alone through to interaction with others) and the goals of that activity (to satisfy basic needs through to helping others and contributing to society).

Taxonomy

 

 

 

 

 

Proposed taxonomy of social activities

This “taxonomy” made me realise that much of the therapy I was offering was at some of the lower levels (individual or small group activities focused on fulfilling basic needs e.g. buying a coffee, ordering lunch, having a conversation). Little therapy was focused on helping others or contributing to society in interaction with others. That is not to say we should do that, but rather, doing therapy in multiple contexts (or sources), which includes Levels 4-6, may serve to increase opportunities in which a person with brain injury can derive meaning.

The creation of meaning during the therapy process is considered essential for a person with brain injury to engage with the rehabilitation process. People with brain injury just want to take part in something, give something back to others and be someone important, in spite of their injury. If we can help people with brain injury take part in meaningful activities reflective of their desires, they may also report a better quality of life, which some would consider the ultimate goal of therapy. Some ways in which we could achieve this include: individual and group therapy; therapy in real-life contexts chosen by the person with brain injury; video-taping interactions involving people with brain injury and family members, friends and/or significant others; completion of projects designed to help others learn more about brain injury or help brain injury survivors cope with the experience of sustaining a brain injury; setting goals that relate directly to something bigger (e.g. getting a girlfriend, getting a job). These are just some examples of the contexts that may help people with brain injury find meaning in their lives.

Ultimately, I wrote this blog to convey a simple message: how important it is to help a person with brain injury find meaning in their lives. This message attests to Mark’s legacy who was dedicated to making lives for people with brain injury both meaningful and satisfying. Not losing sight of what is meaningful to our patients and clients is what we can do as therapists to take his life’s work forward.

IMG_2900

 

Dr Nicholas Behn
Speech and Language Therapist
City University London

 

 

Inside Culture Club

Dom: ‘Post brain injury life is about staying busy and in touch with the world. To that end one of the things I go to is a group set up by my counsellor Cathy that we tentatively call ‘Culture Club’. No, we don’t sit around and discuss Boy George! Once every two months a group of about 6 brain injury survivors plus Cathy sit in a pub in Teddington and discuss anything we’ve been up to. We’re all at different post brain-injury stages; we’re all different ages and very different people. Lotte is the cinema expert; I tell bad jokes and tell Martin I find modern art questionable. He sighs, I’m sure they all do. Cathy tries to stop me swearing. More sighs. The point is it is something to do rather than just sitting at home which seems to be the all too often fate of the brain injured. We have one thing in common, it’s not much, but it’s enough.’

Angela: ‘Everyone is friendly. I look forward to it a lot. I like the variety of topics. I find it funny and Dom makes me laugh. If I could sum up Culture Club in one word, I would use the word “stimulating”. I find the group as a whole, stimulating. I find it hard to communicate which can be frustrating. It helps when Cathy sits next to me as I feel as if I have a friend. I would recommend the group to other people.’

Toby Art 2016Toby: ‘A group for people with speech issues. Although it is called the culture club, it is basically a group for people to get together and chat. Topics could be theatre, comedy, film, TV…basically anything that is NOT sport or politics!
It is a fun and supportive group of people where you will not feel judged. I’m using it to focus on turn taking and concentrating on anything cultural that I might encounter. There is also a marvellous selection of biscuits made available! I do my artwork at:   www.workshop305.com

Martin: ‘Culture Club is a group. I didn’t want to be part of it. I didn’t want to have a stroke – but I did. We all have reservations and might be cautious about coming to a group like this. But once you are there, it’s friendly, inclusive and accepting. We are all different but have things in common. You can say and share as much or as little as you like. You should dare to join us and take that leap.’

Culture Club takes place every other month on a Tuesday morning. Check out the website for more information: www.intandem.co.uk/pdf/groups/cc2016_2.pdf or contact Cathy: cathy@intandem.co.uk .

 

Transparency

I like to be really transparent. Early after a TBI, I had such magnificently apparent social communication impairments that my verbal blurts were excused. As I recovered in visual processing, attention, balance, auditory processing, and something else I can’t remember (probably memory), I looked a lot less disabled. That made the blurts more noticeable and out of place. [Side note: if you work in brain injury rehab, notice I did not include executive function in that list of improvements because that was on a painfully slower recovery trajectory.] As long as I was well-rested and with friends I could usually control blurts. Add in stressors like exhaustion, a crowd, background noise, and the blurting would let loose.

While verbal outbursts are often considered inappropriate, there’s a beautiful truth behind them. I told someone once she reminded me of algae. While she shamed me for about 10 minutes in front of other people for this transgression, what she failed to do was find out what I meant. I was attempting to give her the highest compliment I could think of. I’d been searching in my mind for how to compliment this person, and all that would come to me was a sensation of appreciation and an image of algae. So I told her about the algae.

Barton springsAlgae–the kind I was picturing–is a luscious jewel-tone, so saturated in color as to almost be unbelievable. It’s miraculous in its depth of color. It’s soft and inviting, pleasantly fuzzy even when wet. (That is so cool about algae!) Algae appears delicate but is robust, spreading its influence far and wide. You can try to stop it, but you must humbly lose. Your algae will return, and no matter how you feel about that, it will always be back: strong, resilient, soft, and green.

This was several years ago when I had no capacity to verbalize an explanation like that. It was just a sensation, the color, my childhood memories of Texas summer heat on my skin and the softness of algae on my arms as I rested in the freezing, unchlorinated waters of Barton Springs. I felt the memories, and I wanted her to be loved the way I loved playing with the stringy strips of green that floated on the clear spring water.

But no. Inappropriate. Rude, inconsiderate, oh well.

I have many Autistic and neuro-diverse friends, and we spend a lot of time communicating online. Since I now live in the frigid tundra of Portland, Oregon, I’m not hanging out at the swimming hole anyway. So I’m online a lot. I’ve learned many wonderful things about effective communication from this particular community, and I want to share two of my reflections about that here.

  1. Sometimes there is no cruel intent at all behind a statement.

Why, exactly, is it a problem if I say I don’t like your dress? I’m only saying I don’t like your dress. This isn’t to insult you. It’s 100% possible for me to dislike your dress while still holding you in the highest esteem and even asking you for fashion advice down the road.

Consider that sometimes there is no emotional baggage, ulterior motive, or crap behind verbal outbursts. They’re thoughts that come out without regard for the listener’s feelings. But that doesn’t mean they’re intended to hurt the listener.

If I say I don’t like your dress, we could move on. You’re even welcome to tell me that hurt your feelings! Then, I can say, “I’m sorry for hurting your feelings.” This is how it goes when you’re transparent with your thoughts and don’t assume someone’s trying to hurt your feelings.

  1. Be so transparent that it hurts.

I like to use HTML mark-up. You don’t have to understand computer code to do this, and in increases the odds that your intentions will ring loud and clear online.

If I want to be sarcastic, I make that into HTML-type instructions. (Instructions are inside <>):

<sarcastic>I don’t like your dress.</sarcastic>

(Of course, I don’t get why someone would say that sarcastically, but they might.)

If I need you to know that I sincerely love your dress:

<sincere>I love your dress.</sincere>

In real life, I speak in HTML opening mark-up. I say, “It doesn’t sound like I mean it, but I really like your dress.” Or, “Don’t be fooled by my tears; I’m really happy. I’m just crying.”

When someone with executive dysfunction blurts, even if they say something hurtful, you’re not obligated to assume it’s supposed to be hurtful or inappropriate. There’s always the possibility that the words came out in an unintended tone of voice, the wrong words came out, or that they were exactly the right words, but you didn’t want to hear them.

I want to make sure that we find partnerships in communication. People with brain injury are expected to curb our verbal outbursts, think before speaking (who really does that?), and be more kind and polite. I would ask that as we work on steps in that journey, listeners explore their listening and investigate the ways in which we are just as likely to misunderstand what someone said (or meant) as we are to sometimes say something that didn’t work out. Transparency, not resentment, might be a great key to helping us get through the awkward blurty times, whether we’re the listener or the blurter.

Cheryl Green, MFA, MS

Cheryl-with-waterfallCheryl creates media that combine personal narrative, humor, and social critique to create dynamic, accessible tools for cross-disability justice. She is on the board of Disability Art and Culture Project and served on the board of Brain-injury Information Referral and Resource Development (BIRRDsong). She volunteered with the National Black Disability Coalition and the Portland Commission on Disability.

info@storyminders.com
www.WhoAmIToStopIt.com
Stories from the brainreels podcast

 

Supervision at the fork in the road

image1We all start out with dreams and ideas about how our careers will go. It’s hard to foresee when, where or why the forks in the road will come, but it is almost certain that they will. This blog post explores two key ways in which supervision helped me to negotiate a fork in the path, keep hold of my dreams and step into independent practice.

Seventeen years ago, I embarked on a career in Speech and Language Therapy, with a dream to become a neuro rehab therapist. In the early stages of my career I was fortunate to have some great supervisors (also my managers), who nurtured my enthusiasm for neuro rehab.

In 2008, I took a senior post in a small department without access to clinical supervision within the organisation. I was holding a complex caseload, but for the first time also dealing with wider departmental and organisational issues. I felt the need for external supervision to develop my practice and take care of myself as I entered a more challenging stage of my career.

My line manager continued to oversee my work in post, particularly supporting my CPD, and helping me develop the SLT department. The separation of my clinical supervision to another time and place enabled me to attend to the needs of my clients, as well as my own needs, within this increasingly challenging work context. Through external clinical supervision, I had the freedom to reflect on the needs of my clients more deeply and my own journey more broadly.

Hawkins and Shohet (2007) discuss self-care as an important aspect of clinical supervision. Drawing an analogy between the ‘good enough helping professional ‘ and Donald Winnacott’s concept of the ‘good enough mother’. The ‘good enough mother’ may struggle to cope with the rigours of motherhood without the help and support of another adult, just as the helping professional may struggle to cope without the support of a supervisor. At this point in my career, I was faced daily with the devastating reality of people’s lives following brain injury. I was starting to develop quite strong ideas about addressing these needs with clients but also felt frustrated by the difficulties of achieving gains for my clients. I could easily have been worn down by these frustrations, but with wise and meaningful supervision, these difficult experiences ‘….. were survived, reflected upon and learnt from’ (Hawkins and Shohet, 2007). Through supervision, I became much more conscious of my concern to address my client’s ability to participate in their chosen life roles and started to think about how I could facilitate this for them.

It was at this time that my own personal circumstances changed. With a young family I was keen to be as present at home as much as possible without completely losing connection with my profession. I started to explore how to manage this change in my life and find a way to continue working within my chosen specialism.

Cathy and Sam have written about the changing role of supervision which ‘….. has now extended to one that supports and facilitates emotional resilience, opens up possibilities where there seem to be very few and fosters an individual’s personal/ professional resources to manage change’ (Bulletin, February 2013).

With this changing picture, refined by my professional interest and constrained by my personal circumstances, my supervisor helped me to consider diverse options as I stood at this fork in the road. I don’t remember who initiated the idea of independent practice, but I know that this path seemed daunting, much less travelled and insecure. I didn’t know how to begin walking away from the security of paid employment.

The supervisory relationship was a place of safety that allowed me to: test out ideas, evaluate the pros and cons of working independently, make plans and connections, review early steps and ask silly questions. I saw my first independent client in 2009, nearly six years ago. The transition to independent practice has been necessarily slow as I have been at home with my family, but this has brought with it opportunity to reflect on each small step in supervision and build slowly in confidence. With my supervisor’s support this process has been much smoother and more satisfying than it might have been as early ideas have come to fruition.

Work is not how I envisaged it seventeen years ago, but it does really work for me in the context of my life now. However, I could so easily have missed this path if I had not been able to access great supervision at the fork in the road.

Mary Ganpatsingh
www.communicationchanges.co.uk
@Comm_Changes

References
Supervision in the Helping Professions, 3rd edition (2007), Hawkins, P. and Shohet, R.
Supporting robust supervision practice, Sparkes, C. and Simpson, S. (February, 2013) Bulletin

The Quiet before the Word

An aneurysm ruptured in my brain when I was 27. The facts are simple enough. Yet, I find this topic resists such simplicity. I had been an American abroad, touring a show to the International Fringe Festival in Scotland. I was onstage when it happened, though I don’t remember when I stopped singing. I don’t remember the fall. My next clear memory was waking up in an Edinburgh hospital, after my emergency brain operation was already finished.

Situations like this tend to be terrifying for those involved, and to my parents who flew across the world to rush to my bedside, their memories of this Scottish hospital are infused by this anxiety. But what I remember most from this place was the Quiet. This was not a Quiet I had known before. It was a presence more than an absence, suffused with a marvelous sense of order.  I had a nothing mind, a flotsam mind, and it was carried on this placid current of Quiet.  To experience this Quiet was to be it. My body had undergone a traumatic experience, but my mind was serene. There was still so much I didn’t yet know about my brain injury – didn’t realize I’d acquired a language disorder called “aphasia” – and that my internal and external voice were both affected. With my inner monologue on mute, I was mainly spared from understanding my condition early on. Unable to pose myself the question: “What is wrong with me?” I did not, and could not, list the many things that were.

I would never want my impressions of the hospital speech therapist to be unflattering. She was nice enough. Attentive. But I registered her presence with a slight irritation. My days were suffused by this occupying and glorious silence, and then this slim woman, with birdlike shoulders, would pester me with things to do. I couldn’t exactly grasp her purpose there, but it was abundantly clear to everyone else. I couldn’t read without assistance. Writing was prohibitive. I could only say 40 or 50 words, and didn’t know when I was speaking in gibberish. It’s sometimes like that with a neurological injury. The brain is the organ of perception, so when your brain is injured, your perception can be injured too. I desperately needed my speech therapist. I just didn’t realize that yet.

My sense of awareness lurched forward in stages. When I was released from the hospital, I had to abandon the independent life I was living in New York, following my parents back to their Los Angeles home for a long language rehabilitation, which involved another brain surgery, and speech and language therapy three times a week.

I had always planned to return to Edinburgh, and visit the hospital that treated me, but it took more than five years to do so. I contacted my SLT beforehand and she didn’t simply want to meet up, she wanted to make me dinner too. She was incredibly warm. Over her homemade marinara sauce, we laughed and caught up, and she expressed her gratitude in being able to work on my case. She told me that many of her patients were often in more acute stages than I had been. They needed help breathing or swallowing. Though my language had been seriously disturbed after the rupture, at least she was able to employ speech exercises with me. That was rare.

I am so glad you decided to come back to Scotland, she told me. Even after such a distressing experience.

I said that actually most of my hospital memories were pleasant ones.

Really? She was surprised. You seemed so frustrated…

Her comment and her past observations made sense, but I also couldn’t correct her at the time. Now I was able to tell her that when left to my own devices, I had been content. Even blissful. The things that disturbed my equanimity were mainly related to other people – their expectations – often motivated by their concern for me.

My SLT gave that a lot of thought. She said that therapists are stuck in a difficult situation. It was important not to infantilize your patients. Even if their language is rudimentary, their minds are usually sophisticated. But when you think of them as adults, as people just like you, your empathy engages. And when you imagine yourself facing such an appalling deficit, you tend to fixate on the desperation.

But when we assume people might be uncomfortable, we start to see discomfort manifesting everywhere, she said. Expect the worst, the worst appears. And we rarely suspect we might be the source of our patient’s discomfort.

This conversation became a touchstone for me, a reminder of the constant limitations we face with our narrow perception.

I realize my brain injury was a generous one, because often I didn’t know what was wrong until I had already recovered from it. And these many years later, I see the perspective of the speech therapist, and the woman in the hospital bed. I am finishing a book about my path back to language, and volunteer with people who live with aphasia. I appreciate the wide variety of linguistic experiences, and as much as I can, I try to give people an opportunity to speak for themselves. Still, I know there is a lot of value in Quiet. And even though a word can be beautiful, so can the silence that precedes it.

Lauren Marks

 Lauren-Marks-ResizedLauren Marks is an American author living in London. In 2007, an aneurysm ruptured in her brain, and since then, she’s been writing her way back to fluency. She has been published in Fresh Yarn, The Huffington Post, Brain World, and Aphasia News, has spoken at venues ranging from book fairs to university classrooms, from professional conferences to storytelling events. In the UK, she volunteers at Connect: The Communication Disability Network. Some of this article includes excerpts of her upcoming publication, A Stitch of Time: Portrait of a Mind in Construction. More at www.AStitchofTime.com .

Insider accounts: Living with communication disability

As a student Speech and Language Therapist (SLT) nearing the end of your training, you begin to feel a bit like you might know a few things. After four years of placements and the range of experiences you have amassed through interaction with a variety of clients and their families, you start to think ‘Ok, I’m beginning to get the hang of this.’ Your tentative steps become surer as you get to grips with assessments and hypotheses and management plans and the wonderful array of devices in the SLT toolkit. But, as a fledgling clinician it is also important to sometimes silence the internal noise of ‘What does this test result mean?’, ‘Which therapy approach do I think is best?’, ‘How many intervention sessions should I give this client?’ And just listen.

In a lecture called ‘Insider accounts: Living with communication disability’, Cathy Sparkes and Sam Simpson provided us with this opportunity. They invited a group of their clients with a range of communication disabilities to come in and talk to all the final year student SLTs at UCL. With our assessor’s hats firmly off, we were able to sit back and listen to people’s lived experiences. All the speakers were very generous with their stories, sharing the painful, puzzling and even playful moments of coming to terms with their respective communication disabilities, both acquired and lifelong, and moving forward with their lives. Many accounts were the result of a number of years of experience and reflection, and it was partly this that made the session so unique for us.

As an SLT, you are generally involved for a very small snapshot of a client’s journey – a few months, maybe a year if you’re lucky. To borrow an analogy, you are ‘a stripe in the scarf of their story’ [1]. But this experience enabled us to more fully appreciate the stripes that come later on, when our input may have finished and our clients have had to renegotiate what it means to live in the world. Furthermore, the speakers were able to give us access to what some of our clients might be feeling now, as we’re meeting them in the early stages after a stroke or brain injury. For example, it may be easy for us to categorise our clients in the light of what they can outwardly communicate. However, the Comprehensive Aphasia Test does not allow us to measure the presence or otherwise of someone’s inner voice – you know, the one that narrates your thoughts and feelings – I had never before considered that loss of spoken language might also lead to inner silence, as so articulately described by one of our speakers.

It was a thought-provoking and at times, moving morning, and overwhelming feedback from the students was that we felt our practice would be changed as a result. The session reminded us to always dig deeper than what we might be presented with on the surface, step outside of our therapeutic comfort zones to provide flexible and individualised support to our clients, and of course, to listen.

Kat UCL Student - 1

 

Katherine Newton
Student Speech and Language Therapist, UCL

[1] McIntosh J., Charles N., Lyon B. & James K. (2011). The Strands of Speech and Language Therapy: Weaving a Therapy Plan for Neurorehabilitation. Milton Keynes: Speechmark

Yoga and Brain Injury

Mail AttachmentI have never written a blog before, but the invitation to do so is a timely one as I ‘grow up’ and find my way with social media on my freelance ‘adventure’. Since I took early retirement from my role supporting people with Creutzfeld Jacob Disease (CJD) and their families in the NHS, my goal has been to develop all the different aspects of my work and life that I am passionate about, and link them in a coherent ‘whole’.

Working with a person’s experience of cognitive impairment, living with the risk of an inherited dementia, my family, travel, yoga …. and my travelling companion Personal Construct Psychology (PCP) are the key things I knew I wanted to be part of this new phase of my life. I worried about keeping focused without the structure of a job to go to in order to keep focused, so with the luxury of now being able to make my own timetable, I went to an early morning yoga class three times a week.

I started to elaborate my sense that yoga could bring relief for my clients living with cognitive impairment. I undertook yoga therapy training for people working with children with special needs with Jo Manuel at the Special Yoga Centre, and started to engage one of my elderly clients in a gentle yoga practice. It is striking how she can remember movements and postures from the previous week, whilst she is unable to remember what has been said just five minutes beforehand. This in itself is a major opportunity for validation in people with cognitive impairment, the critical essence of person-centred interventions, however yoga has a great deal to offer people with brain injury on many levels: rehabilitation, health and well being, managing cognitive impairment and emotional consequences of brain injury.

A year of weekly yoga therapy with a woman who was bed bound following three strokes and diagnosis of dementia, with neurogenic pain and deemed unsuitable for rehabilitation, is now moving herself around her bed, up to sitting, transferring without the use of a hoist. She is also now able to discuss the nature of her difficulties and articulate the changes she experiences in her body. The role of yoga in rehabilitation, promoting and maintaining mobility, breaking down the goals into small and manageable steps for people with neurological challenges and cognitive impairment has huge potential, not least because of its focus on awareness.

Peter Blackaby (2014) explains how it is feeling movement that brings about learning (sensory motor cortex), and not ‘telling’ our muscles to move (motor cortex). He quotes a study where monkeys have had the motor cortex for a skilled movement removed from their brain and yet can still make that same skilled movement. Another part of the brain takes over. However, when the sensory motor cortex is removed for that same skilled movement, the movement can no longer be made at all. Critically it is the noticing involved in the practice of yoga that brings about change in body and mind.

Yoga is well known for the links between mind & body, and yoga practice is in fact a physical and tangible route to achieving a state of meditation, which has evidence based health benefits in generating the opposite of the stress response in the body. There is increasing evidence for change in circulatory, emotional and mental health, in addition to changes at a cellular level in people who are recovering from cancer. From a psychotherapeutic perspective, yoga is also a way of working with the aspects of ourselves that are not easily put into words, and may never even be articulated. In this way yoga brings therapeutic intervention within reach of people with severe communication disorders.

I have been elaborating this idea from the perspective of PCP. Our theories about the world around us exist at all levels of awareness, and while psychotherapy might advocate that its role is to help people articulate their construing at lower levels of awareness, I personally wonder whether that is always necessary for change and wellbeing? In PCP we see words as merely what we use to convey our discriminations and conclusions about the world around us, and there will always be much of our construing that remains inaccessible… that part of our construing which is non-verbal, intuitive, or was developed before spoken language. Yoga enables us to experiment and elaborate ourselves at that nonverbal level and so is it surprising that the practice of yoga brings about changes in our thinking and our emotions?

There are many different forms of yoga, and increasing research evidence for the health benefits of yoga in general, and for yogic breathing techniques and mindfulness in particular. For me, I am interested in what all yoga has in common rather than a specific approach, and its contribution in the process of achieving and practising mindfulness, with a view to developing yoga as a therapeutic intervention with people with dementia and other forms of brain injury.

I am currently taking referrals for one to one work and I go into residential and day care facilities. l now look forward to teaching the first 25 hour yoga training for people living or working with people with dementia and other forms of brain injury in March 2015 at Special Yoga in London. It’s a course for family members interested in exploring ways to engage with their relatives with brain injury, for health professionals interested in the application of yoga with people with brain injury, and for yoga teachers and practitioners wanting to understand more about the experience of cognitive impairment, whether this is stable and resolving, or progressive and/or fluctuating. The flyer can be found at http://specialyoga.org.uk/teacher_training/yoga_dementia/ or you can contact me directly.

Clare Morris
07545 287139
clrmrrs@me.com
www.claremorris.org.uk
@ClareMorrisPCP

News Group: Behind the Scenes (2/2)

I wrote last month about how some of our neuro-rehabilitation service users benefit from the experience of attending the news group we run on the ward.

news2

 

As a service, we have found that we can use our group provision for a number of purposes:

 

We can use the group to provide different packages of care to different service users within the same session. We may invite people to attend news group as part of their goal-based therapy. For example, they may be working towards a more consistent use of intelligibility strategies, or demonstrating increased communicative confidence by facilitating discussion or presenting a news item as part of the session.

Some people know they are able to participate relatively independently in group conversation. However, they may continue to benefit from support, for example to counter the effects of fatigue or distractibility. Further speech and language therapy (SLT) input for these people beyond discharge from our ward may not be indicated, but there are benefits to them continuing to attend the group while they are with us. This monitoring and maintenance package allows room for fine-tuning and further confidence boosting prior to discharge. Such people are also often positive role models for other group members who may require higher levels of support to engage in group conversation.

Some group members still early on in their admission, or newly referred to SLT by others in the multidisciplinary team, may join us for a number of assessment sessions. This may be because the group setting reveals more interactive skills than they are able to show in the often more transactionally-based ward setting. Alternatively, for some there may be an indication of higher-level language processing or social communication difficulties, which do not impact particularly on the ward. Attending the group allows further assessment of the impact, which their impairments may have in more complex group conversation. It can also provide a concrete starting point from which to discuss these subtle difficulties with the service users who may not themselves necessarily consider any difficulties to be present

Group sessions provide rich observation opportunities for new staff and students. Over the past year, we have been joined by students from nursing, medicine, physiotherapy and occupational therapy. We invite new staff members to join us as part of their induction. The richness of the experience of coming to the group as an observer is that there is the opportunity to meet people with a number of different communication diagnoses, and to see in action the strengths and needs these diagnoses may create. A further positive is that none of our observers is passive; anyone coming to visit our group is invited to participate, thus enriching their own experience and learning, while providing further positive role modelling for our service users. Our own SLT students will often take on facilitation of the group for the duration of their placement, which works particularly well with peer placements.

The news group is a joint project between occupational therapy (OT) and SLT. We have found that we need to meet frequently to review and discuss the strengths, needs and progress of each participant to ensure we keep our input focused. Otherwise, there can be a risk of running a session which goes through the motions of looking at recent news stories, but which gives no specific input to any of the packages of care identified for each service user. I will admit that this has happened at times especially if staffing is low or the ward very busy. After a ‘going through the motions’ session, I feel I have facilitated an opportunity for social interaction and the chance for some people perhaps to take on a bit of information about current news events. However, I also feel that the same session could have been facilitated by an enthusiastic volunteer with no specific training in or knowledge of communication impairment.

News group review has now evolved into a joint SLT and OT review of the needs of whoever is on our ward at any given time, and whether there are other groups we could run. This can often change from month to month as we aim to create group opportunities for the people we have on our ward, rather than to try to shoe-horn people in to a fixed format. For example, in the last fortnight we find we have several people with specific comprehension needs and have this week started a ‘points of view’ group structured with a very low language load, but providing opportunities for interaction and expression of likes and dislikes through music appreciation (a clear split in today’s group between heavy metal and the Jackson 5!), chocolate tasting, TV reviewing and more as we plan it..!

Nic Martin