This film allows us a brief glimpse into the life of Paul and Julie, who are living with Paul’s diagnosis and the inescapable changes and challenges that are brought on by Motor Neurone Disease. What struck me when I first met this delightful couple with my colleague Rachel Moore was their resilience and strength of spirit, particularly as it would be understandable given this diagnosis, to feel devastated and lost.
As a Speech &amp; Language Therapist my initial aim for this film was to focus quite naturally on communication. I wanted to show how Paul and Julie were coping with communication, despite Paul’s complex physical disabilities. I also wanted to demonstrate how technology and strategies, such as eye pointing to letters on a chart, can support that most basic human need, and keep the door to communication open.
However, this film became more about how one man, with an infectious humour and robust South London character stayed completely and utterly present.&nbsp; Paul’s role as a husband, dad, friend and much-loved member of his community was still very evident.
In the film, the couple talk about their experience of voice banking. Since we made the film, technology has moved on and thankfully voice banking no longer needs to take as long to complete. Paul’s personalised synthetic voice quite clearly has a South London accent, which is lovely, even if it is an approximation of what Paul used to sound like.
With message banking however, Paul recorded short clips of himself hilariously mock-berating his dog, creating football sayings / chants or telling loved ones how much he loves them. Paul was able to record himself talking, laughing and joking before he lost his natural speech and these mini recordings are Paul’s personality shining through.
I will cherish my time working with Paul and Julie on this film. It has taught me that with the diagnosis comes grief, because inevitably there are going to be losses along the way. However, Paul and Julie’s grief is not despairing but is in fact life-affirming. I know better now that grief is not depression as I understood it before, but a completely normal psychological reaction to loss. I was able to see that Paul and Julie are coping with these losses because they had options. The option to voice bank, to message bank, to use technology for communication and explore various other strategies and decide what suits them best, the option to reformulate and change.
For those of you who are interested, in this film alongside the Eye Gaze technology, Paul was using a colour encoded e-tran frame which you can download for free from our website, <a href="https://acecentre.org.uk/resources/encoded-coloured-borders-e-tran/">here.</a>&nbsp;They also explored <a href="https://www.childrenshospital.org/centers-and-services/programs/a-_-e/als-augmentative-communication-program/protocol-of-assessment-considerations/quick-access-and-low-tech-tools">Boston Hospital’s Communication Flip Book</a> which is also free and customizable.
And finally, some “thank you”s. Thank you to my husband Alex for his time and expertise in creating this short film. Thank you to Speech &amp; Language Therapist Anna Pardanjac for referring Paul to our NHS Specialised AAC Service and for doing the groundwork by supporting Paul’s decision to voice / message bank for future use in AAC. Thank you also to my colleagues at Ace Centre for their insights and support and a special thank you to Julie and Paul for allowing us to share their story.
I hope you enjoy the film!
Suzanne Buckley
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An insight into Paul and Julie&#8217;s lives; how they manage the inescapable changes and challenges that are brought on by Motor Neurone Disease


Paul

Meet Jess 
Jess, like any 25 year old, values her independence. Happy and outgoing, if she’s not playing boccia, you’ll find her out shopping, having a massage, listening to Motown music, or meeting up with friends – she especially loves to walk along the promenade where she lives. Jess’s cerebral palsy affects her speech, but she’s used augmentative and alternative communication (AAC) technology for many years and she really knows her way around the TobiiDynovox eyegaze device that has long supported her communication.
Jess was referred to Ace Centre when she started to experience problems with the version of the device she was using; the battery kept going flat and when she went outdoors the glare of the sun was preventing the device from picking up her eye movements. That meant she had to switch access methods every time she went outdoors and then indoors (which she does a lot when she’s shopping!) but as she couldn’t switch method herself, it was negatively impacting her independence.
TobiiDynovox i13
The team at Ace Centre arranged for Jess to upgrade to a TobiiDynovox i13 device – the most recent version of the device she was already using – and it has opened up a world of communication for her.
Additional features include:
New camera technology means the device can pick up Jess’s eye movements when she’s outdoors so she no longer has to switch access methods, giving her back her autonomy.
Accessible apps for Facebook and Instagram enable Jess to engage with social media. She loves to comment on and like posts and is particularly interested in political debate.
Partners window display – this small LED screen on the back of Jess’s device has transformed her ability to communicate with Adele, her PA, in busy, noisy environments. Jess is delighted that Adele no longer has to peer over her shoulder to see what she’s saying, and it makes trips out with friends easier too.
The TobiiDynovox i13 device has given Jess back the ability to communicate independently both offline and online providing greater support for face-to-face communications in previously difficult environments and as a result making the social interactions that are so important to Jess, more spontaneous and enjoyable.
Nobody says it better than Jess herself:
“My Dynavox has been my lifeline to friends and family”

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Jess was referred to Ace Centre when she started to experience problems with the version of the device she was using


Jess

Patrick is fun-loving, football crazy and at age 10 has already developed a strong social conscience setting up a litter picking club at his primary school. &nbsp;His mantra for life is: &nbsp;‘If it is to be, it’s up to me’. Determined to pass his Year 6 exams, he needed to communicate effectively at school.
Patrick has cerebral palsy which affects his speech and causes involuntary movements that become more pronounced when he’s excited – like when he’s talking with his friends about computer games! These movements also affect his ability to control the eyegaze technology he uses for face-to-face communication.
As Patrick progressed through Key Stage 2 he was finding it difficult to listen to the teacher and complete increasingly demanding schoolwork using his wheelchair-mounted eyegaze. Simple tasks like taking notes were taking too long and left him feeling frustrated and self-conscious. These issues were was also causing concern for the transition to secondary school and Patrick was determined to find a way to control his ability to communicate in the classroom, the playground and online.
The team at Ace Centre assessed Patrick’s evolving needs and maturity before identifying, developing and adapting the most appropriate school-based Assistive Technology and kit. This included looking at alternative ways of controlling the computer including using a joystick or eyegaze to control the mouse and enter text using an on-screen keyboard.
Following the initial assessment Ace Centre was able to loan a piece of equipment for Patrick to try. The team then met with him to see how he got on with it. Ultimately it was felt that eyegaze technology continued to be the most suitable but with a range of software adaptions to make it more efficient.
Going forward, as Patrick grows and his skills and interests develop, the way he accesses technology is likely to change. It’s important, therefore, to regularly review his progress and Ace Centre works closely with Patrick’s school and Local Education Authority to provide the regular, appropriate support for his individual needs.
Patrick’s mum Jo describes the impact the eyegaze technology has had:
‘It’s opened up a world of education for Patrick and allowed his personality to fully emerge – for the first time he can truly express how he feels.’
‘’It’s really facilitated his learning, enabling him to progress in reading and maths. His ability to use Powerpoint using eyegaze is phenomenal and means he can do exactly what his peers are doing in class. He can also communicate more effectively with his teachers and explain when he doesn’t understand something so he’s less frustrated and more focussed on his work.’
Patrick and his family are now starting to prepare for the transition from primary to secondary school in 2021 and the support provided by Ace Centre will be more important than ever to overcome the additional communication challenges the high school setting presents.
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Patrick is fun-loving, football crazy and at age 10 has already developed a strong social conscience setting up a litter picking club at his primary school.  His mantra for life is:  ‘If it is to be, it’s up to me’. Determined to pass his Year 6 exams, he needed to communicate effectively at school.


Patrick

Science fiction writer, blogger and motivational speaker, communication is at the heart of everything Aidan cares about.
A passionate advocate for disabled people, Aidan regularly presents at disability awareness events including to staff at his local council, foster carers, support staff in residential homes, to other young people with disabilities and to sixth form students in local colleges.
Aidan has choreoathetoid cerebral palsy which means his speech can be difficult to understand. It also affects the movement in his limbs and as a result, the iPad mini he was communicating with using his thumb was both awkward to use and often selected the wrong words. It also struggled to keep pace with Aidan’s speed of thought!
To say he was frustrated was an understatement…
Whilst waiting for an assessment from the NHS Specialised service, Aidan joined some of the Ace Centre team at the Oldham office for an information day session. He trialled some alternative access methods and prioritised what he wanted to look at as part of a more detailed assessment of his specific requirements. Everyone left the session excited to find the right equipment for him!
When Ace Centre visited Aidan at home, he was keen to trial different pieces of technology and consider what features he required. Aidan eventually settled on a dedicated eyegaze device, the TobiiDynavox i13+, which enables him to write by scanning his eyes over a screen and dwelling on a specific cell, using his eyes in much the same way as a computer mouse. Mounted to his wheelchair Aidan says it has revolutionised his ability to communicate both in-person and online.
&nbsp;‘It gives me literally everything I need… It is so comfortable to use and my sitting position when using it is excellent. I am getting closer to total control. ‘
Aidan is making the most of the freedom to communicate effectively wherever, whenever and to whoever he wants – in his own unique and engaging style, and at awareness-raising events, he now takes to the floor, with total confidence that technology will support – not sabotage – him.
The TobiiDynavox i13+ also has Office installed which enables Aidan to indulge his love of creative writing.
‘I can do my writing, email it to the publishers, get drafts back to do edits, do the edits and return the work, all independently and all together.’
It also provides easy access to social media, enabling him to focus on his successful blog, <a href="https://anaidforall.wordpress.com/">An Aid For All</a>, in which he shares his personal experiences and discusses topics ranging from science-fiction, fantasy and cult television through to poems about the weather.
Usually a man of many words, Aidan’s sums up the impact the TobiiDynavox i13+ has had in just one:
‘Awesome!’
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A passionate advocate for disabled people, Aidan regularly presents at disability awareness events including to staff at his local council, foster carers, support staff in residential homes, to other young people with disabilities and to sixth form students in local colleges.


Aidan

Glyn Briscoe lives in Wigan and was put in touch with Ace Centre following an NHS assessment.
After being diagnosed with an optic nerve glioma, Glyn became blind at the age of ten, has a right-side paralysis and is unable to speak, so is completely reliant on Assistive Technology to help him communicate with his dad, Carl, and mum, Elaine.

Glyn had been using an SL35 Cherry Lightwriter for over 15 years, but the model was unfortunately discontinued, and repair parts were impossibly hard to get hold of.
The newer versions of the Lightwriter did not encompass the specific functions that Glyn required, such as there being no key tone when keys were pressed. This function is used to alert a blind person of its use, so it was deemed unsuitable for him. He tried using an iPad with a bespoke keyguard but found this hard to use, so it was clear that he was in desperate need of a new device to allow him to communicate with his friends and family as before.
With no suitable replacement available from existing Assistive Technology, a speech therapist recommended Ace Centre to Carl and Glyn, and they attended an information day to seek advice around next steps and were encouraged to make a referral for a full assessment.
Carl says: “Glyn is totally dependent on his communication aid due to being blind and having no speech. The smallest sentence took sometimes hours to decipher so it was important that we found something he could use easily and effectively.”
Glyn is very sociable and enjoys the company of other people, especially older people. Carl says: “This came from his early school days where, because of his disabilities, his classmates couldn`t/wouldn`t relate to him, so he found the conversation with older people like grandparents very enjoyable because they had the time to talk on his level without judging him.”
Like a lot of blind people, having no sight makes them very tactile and Glyn enjoys making Lego models, doing arts and crafts with his mum but by far, his biggest passion is music. He has a wide knowledge of music genres from 60’s and 70’s, to local folk groups like the Lancashire Hotpots.
He is also a die-hard Wigan Warriors supporter and has been a season ticket holder for years, Rugby League is in the family from grandparents, parents and siblings so conversations about Rugby League was something that happened a lot in the house and Glyn didn’t want to miss out.
Ace Centre spoke to Glyn and Carl, who suggested various ways to improve his social skills then carried out an assessment of Glyn`s ability to use various types of communication aids to find the best option for him to use. Having learned to touch-type, Glyn was dependent on using a keyboard-based device and was struggling to find something he could use effectively due to his visual impairment.
Lizzie Sadiku is an AAC Consultant at the Ace Centre and has worked closely with Glyn. She says; “We trialled several different devices that were thought to be appropriate, looking at features such as auditory feedback and tactile feedback, as Glyn was reliant on these. We held a conversation with Glyn’s parents as well as Glyn himself, to work out what worked well for him, and what his main difficulties were.”
After trialling a range of solutions, Glyn finally found one that seemed most appropriate for his needs – the Allora 2 by Jabbla. This contemporary, digital communication tool with a clear and natural reading voice, also featured word prediction, the ability to pre-programme 100 key phrases, and a built-in microphone for family or carers to dictate messages. &nbsp;Because it featured auditory feedback on letter and function keys, this allowed Glyn to hear what he was touch typing to make sure it made sense, enabling him to participate more freely in conversation, supporting his independence and socialisation.
After settling on this, Ace returned to carry out training with Glyn and his family so that they could continue to communicate with each other as they had previously.
Carl says; “Glyn endured months of being unable to communicate with his family due to the Cherry Lightwriter being inoperable. The intervention and subsequent solution of the Allora 2 machine allowed Glyn to again take part in conversations without the whole family becoming stressed in efforts to understand him.”
Says Glyn: “I like my new machine because it is easy to use and has a button that sounds like a car horn that’s fun to press when I want mum and dad to get me things.”
Carl adds: “As his dad, I’m not sure if I agree with that!”
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After being diagnosed with an optic nerve glioma, Glyn became blind at the age of ten, has a right-side paralysis and is unable to speak, so is completely reliant on Assistive Technology to help him communicate with his dad, Carl.


Glyn

Putting the right steps into place – eye-gaze technology is the star of the show for Lisa!
Lisa Glass (Simpson) is determined to express herself and teach others to do the same… through dance. While cerebral palsy has affected her movement and speech, she leads an active life, managing her own care and social aspects of her life as well as running a dance business.
Lisa became interested in choreography whilst at <a href="https://www.hereward.ac.uk">Hereward College</a>&nbsp;and then later went onto study Surface Pattern Design at University. Following her passion, she now is an Artist in Residence at UCLan (University of Central Lancashire) alongside her own dance initiatives. Lisa has gone onto to develop the <a href="https://simpsonboard.co.uk/about-the-simpson-board/">Simpson Board,</a> a system to allow people with disabilities to choreograph a dancer.
We’d been working with Lisa for a number of years supporting her communication needs and access to technology in particular her computer. She’d originally accessed our support through an NHS-funded service with <a href="http://www.aintreehospital.nhs.uk/our-services/a-z-of-services/north-west-assistive-technology/">North West Assistive Technology (NWAT)</a>, based at Aintree Hospital.
Working in partnership, we’ve developed a communication system which provides her with the same sense of flexibility and independence in her online communications as she has in her day to day life. &nbsp;Over the years Lisa had developed and perfected a system based on a <a href="https://www.northernspeech.com/aac-augmentative-and-alternative-communication/eyelink2/">EyeLink board &nbsp;</a>&nbsp;– which she prefers to use for a lot of face to face communication but will use computer-based systems when she needs to – or for long-distance communication. This started with using a switch at her knee with EZKeys – the same software that Stephen Hawkins used and over time she has moved to eye gaze technology.
Most recently Lisa turned to us when her previous eye-gaze system broke.&nbsp; After consultation with NWAT, who are funded to provide computer access equipment, the team from the Ace Centre carried out a joint assessment to identify which developing technologies Lisa would benefit from the most. After carrying out an initial evaluation in Lisa’s home, we identified the best eye-gaze system compatible with her desktop computer. Understanding Lisa’s preference for low-tech rather than high-tech systems we highlighted the eye-gaze kit and switch kit so she could also access her phone. The new eye-gaze technology provided enables Lisa to freely speak to others online. Something she previously used to great effect in developing her business and finding love! She met her husband online – using AT.
Adapting the eye-gaze to her day to day life has also enabled Lisa to apply the same principles to the dance sphere. It was imperative that she was able to communicate clearly and accurately with her students and other staff members. And she’s taken it further, developing her own choreography system for other people with disabilities to direct others. Looking to the future if Lisa requires any further assistance, the Ace Centre is able to address any issues that come up through our remote support service.
Our partnership with Lisa supports her to work and communicate independently without having to rely on work colleagues, friends or family for help. The impact of her actions go beyond the personal and individual – Lisa allows us to use her experiences to directly help others identify which systems they would benefit from. She also provided her testimony and insights for our Ace Centre network day – helping other people and individuals gain confidence, understanding and encouraging them to let their skills, interests and impact to take centre stage just as dance does for Lisa.
Find out more about Lisa, and her novel communication system for Dance Choreography at <a href="https://simpsonboard.co.uk">SimpsonBoard</a>

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Lisa Glass (Simpson) is determined to express herself and teach others to do the same… through dance. While cerebral palsy has affected her movement and speech, she leads an active life, managing her own care and social aspects of her life as well as running a dance business.  


Lisa

<h2 style="text-align: center;">Transforming lives! Helping Marie communicate on her own terms, with her own words, in her own voice.</h2>
Almost everyone with Motor Neurone Disease will eventually lose their ability to communicate using natural speech, with some eventually not being able to speak at all. Understanding what the future may hold and the impact to her and her family, Marie Williams wanted to be prepared.
With the support of her husband Hugh, her local Speech and Language therapy team and in partnership with the Motor Neurone Disease Association Marie spent time recording a set list of phrases to create a synthesised version of her natural voice. When we met her we were thrilled to hear her unique accent spoken out through her communication device.
Motor Neurone Disease is often further complicated by changes in physical movement, so it was key that Marie was able to the use the most effective assistive technology with her communication device and that’s where the Ace Centre team came in. A switch, headmouse – assessing Marie’s physical circumstances and the environment she was living in we identified using her eyes – and an eye-gaze device was more efficient than other methods. Her family described it as a piece of science fiction brought to life!&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; &nbsp;&nbsp;
“You’ve transformed our lives!”
The eye-gaze technology itself was only half the picture – key to making it as effective as possible was the positioning and setup of the device. Marie was very fortunate to have an amazing network of support to help remain active in her daily life and the lives of her family – from her husband Hugh to her speech and language therapist Matt, from the care home staff and highly dedicated and engaged student nurse to the local Environmental Control Service. The Ace Centre was proud to be part of such a collaboration creating the right environment to enable the technology to work for Marie.
A clamp-on her wheelchair and floor-stand provided by our Rehab Engineer ensured the eye-gaze was held in the correct position wherever Marie was, enabling her to communicate when she was sitting or lying down. The Environmental Control Service worked alongside us integrating her Kindle account, television controls and bespoke call-bell for nursing staff enabling Marie to personally shape her day’s activities and physical environment.
And she was able to do it in her own unique style. It was straightforward to download Marie’s voice onto her computer which fed into the eye-gaze software. It was easy and intuitive for Marie to operate – and the familiarity and comfort of her voice meant her personality and character was ever present!
“This is a wonderful system. Thanks to it Marie’s had a boost to her wellbeing and it’s given her back some independence”&nbsp; 
Our partnership with Marie and her family wasn’t just about assessing and then installing the equipment. Built into her system was the ability for us to work remotely to fine-tune, update and change software and operations. It meant that Marie and her family had the confidence that the technology was the best it could be and it could continue to be developed and adapted to fit around her life.
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Transforming lives! Helping Marie communicate on her own terms, with her own words, in her own voice. 


Marie

Tamsin, who has cerebral palsy, attends a mainstream primary school. She uses an eye-pointing communication book based on the ACE Centre’s Look2Talk system. She also uses a Tellus communication aid with the ACE Centre’s Talk Together vocabulary, which she accesses with a knee switch. Tamsin is able to communicate anything she wants using her Look2Talk book. She has a number of peers who are now able to communicate with her completely independently of any adult facilitation. Her younger brother is also able to communicate and play with her using the communication book. Tamsin is also helped to access the curriculum using the Tellus communication aid. Her communication skills are so valued by her peers that they have voted her to be their class representative on the school council.

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Tamsin, who has cerebral palsy, uses an eye-pointing communication book and Tellus communication aid which allows her to communicate and play with her peers independently. 


Tamsin

Claire, who has cerebral palsy, is studying physics at Imperial College. She uses a ruggedized tablet computer that she accesses with a joystick and switch. The computer enables her to send and receive text messages – essential for coordinating a busy student social life! Although she often relies upon her own speech, she uses synthesised speech as a backup, or when she is giving talks or presentations. During tutorials, Claire’s Study Assistant writes notes onto a DigiMemo that can be shared amongst other students. Interestingly, Claire’s Tutor finds that the students engage much more with Claire’s assistive technology than with the conventional whiteboard that they had all found a bit daunting! Claire has been a high flyer throughout her academic career and has aspirations to pursue a PhD.

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Claire, who has cerebral palsy, is studying physics at Imperial College. Her tablet computer with joystick and switch and the DigiMemo pad allows her to easily share notes and ideas with other students. 


Claire

Following her stroke, Aroob has significant word-finding difficulties which mean that she frequently can’t think of the right word she needs at the right time. This short video shows Aroob in her mainstream school using a specialised communication app on an iPod Touch to visually search&nbsp;for the word she needs. This can then be spoken by the iPod, or Aroob can often say the word when she sees the symbol. Aroob and her peers think that having the iPod is cool – it’s been a great boost to her self-esteem and confidence.

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Following a stroke, Aroob had significant word-finding difficulties. Using a specialised communication app she is now able to visually search for the words she needs.


Aroob

Sandip, who’s 40, has cerebral palsy. He uses a Lightwriter communication aid as part of his communication strategy, along with onscreen keyboards accessed with a sliding hand switch. He’s an exceptionally fast switch user, achieving speeds of 0.3 seconds, and a joystick enables desktop navigation. Sandip has been working for many years but has now taken a career break to pursue a Masters degree in International Relations. His assistive technology has been essential for him to operate in the worlds of work and higher education. Just as importantly, it also supports his social life.

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Using a Lightwriter communication aid and onscreen keyboards, Sandip, who has cerebral palsy, is able to fully participate both at work and university. 


Sandip

Jess was referred to Ace Centre when she started to experience problems with the version of the device she was using

An insight into Paul and Julie&#8217;s lives; how they manage the inescapable changes and challenges that are brought on by Motor Neurone Disease

People we support

Words from Paul