Thumb Print - Autumn 2017

The magazine of the Motor Neurone Disease Association

Autumn 2017

“When Sam lost his voice, I found mine.�

For mND

GAZE COMPATIBLE

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, part of the

family

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Discovery of drug compounds How scientists at the Sheffield Institute of Translational Neuroscience are identifying new drug compounds for MND

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“I wanted to care for her until the very end.” Clive Moore shares his experience of caring for his wife Ann before she died of MND

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Neurologists call for end to unfair CHC funding Claire Brown describes her battle obtaining continuing healthcare funding

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“When Sam lost his voice, I found mine.” Dena talks about how as a carer, asking for help is one of the most important things she has learnt to do

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How we have spent the ice bucket challenge money so far How the money donated has been turned into research and support for people with MND

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“I have learnt so much from Harry.” Tresea Myers, AV describes her relationship with Harry Price, who is living with MND On the cover: Sam and Dena Cole at their home in Leicestershire.

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, PO Box 246, Northampton, NN1 2PR. Reg. charity number 294354. Editorial and advertising enquiries: Mel Barry, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch.

welcome…

We recently said farewell to two valued directors of the MND Association, Karen Pearce, our Director of Care (South) and Linda Cherrington, our Finance Director. Whilst it is always sad when people leave, it also provides an exciting opportunity to bring fresh experience and skills to the MND Association leadership team. I would like to welcome Nick Goldup as our new Director of Care Improvement and David Oldham as our interim Director of Finance. Still on the subject of exciting opportunities, many of us will never forget the summer of 2014 and how it was dominated by videos of people donating money and having a bucket of icy water poured over their head! The global awareness and money raised from the Ice Bucket Challenge marked a turning point in the MND community’s history and enabled our Association to bring forward many of our plans that would otherwise have taken years to fund. We asked you, our membership, how we should spend the unexpected windfall, with the majority (80%) wanting to see the money invested in MND research. To date we have spent £5.6million of our £7.2m Ice Bucket windfall. This includes £4.7million invested in research, £555,000 invested in care, including the launch of our new welfare benefits service, specialist MND roles and our communication aids service. We have invested £120,000 in further developing volunteering and £305,000 on campaigning and raising awareness of MND. On page 20 and 21 we have created an illustration to demonstrate how we have spent the money so far. We are committed to spending the remaining £1.6million over the next few years and we will keep you posted on how this money is allocated and the difference it makes. The investment in research has already yielded results with two new genetic discoveries last year. Indeed, we will be hearing about the very latest on what is happening in MND research around the world at our International Symposium on MND in December. Many of us at the Association are busy preparing for this exciting global event. So far, we have over 700 delegates registered and it is looking like this will be the largest symposium ever in North America. As always, we will keep you updated via the Symposium pages on our website and in the next edition of Thumb Print. Thank you for all you do to support people affected by MND through your support for us.

Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply that those products or services will be provided, funded or available via the Association.

Sally Light Chief Executive

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New specialist post in East Surrey

Stronger Together exhibition

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upport for people with MND living in East Surrey is set to improve with a new specialist rare neurological conditions post. Staff from the Association, together with people living with MND, worked with the East Surrey Clinical Commissioning Group in this first for the county. Jane Giles, Regional Care Development Adviser for Surrey and West Sussex from the MND Association said: “There were already specialist posts for MS and Parkinson’s in the area, but it was clear that people with MND and other rare neurological conditions would benefit hugely from the same approach. This new specialist practitioner will co-ordinate the huge range of services that a family affected by MND might need; from speech and language therapists, to dieticians and occupational therapists, from wheelchair and adult social care services to specialist respiratory and palliative support.

“This new specialist practitioner will co-ordinate the huge range of services that a family affected by MND might need.” “We were able to use our MND Charter and the NICE guideline on MND to help evidence our business case and it was incredibly powerful campaigning side by side with people living with MND too.” David Setters has been living with MND since 2012. He said: “I count myself lucky as I have a relatively slow progressing form of MND and I’m so pleased to have played a part in the Association’s campaign to secure this ground breaking post in East Surrey. I know how much it will benefit people living with MND and their families. “It’s vital that there is co-ordination of all the services that can make such a difference to the quality of life of those fighting what is such a devastating disease.” The post should be operational in November and will be partially paid for by the Association in year one, and thereafter funded by the Clinical Commissioning Group.

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V presenter Jeremy Vine, who is both an Association and a West London and Middlesex Branch patron, joined guests at the ‘Stronger Together’ art and photography preview evening in London last month. All the art on display was for sale, and created by people who live with, or did live with, MND. Sarah Ezekiel exhibited the paintings she creates using her communication aid, while Miles Pilling showed the photography he captures from his mobility scooter. Finally, paintings from the late David Shaw, who lost his battle with MND, were also on display (see page 26).

Jeremy Vine, Miles Pilling and Kim Wilde

Actress and MND Association ambassador Gina Bellman – who is good friends with Sarah Ezekiel – also attended the event, as did singer and radio DJ Kim Wilde, who is friends with Miles Pilling. Around 30 works of art were sold on the night, and the exhibition ran for four days raising over £10,000.

NICE guideline on MND

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he NICE guideline on MND published in February 2016 is continuing to have an impact on the care people with MND receive. We are working closely with health and social care professionals to ensure that they are aware of the guideline and are offering services in line with it. In the last edition of Thumb Print we reported that we had developed an audit tool, Transforming MND Care. The audit tool is to help healthcare professionals identify which aspects of care they provide need improvement.

Currently over 130 teams or services have registered to use the audit tool to help them assess their level of compliance with the guideline. For a copy of What you should expect from your care a pocket booklet summarising the NICE guideline recommendations contact MND Connect helpline: 0808 8026262 or email mndconnect@mndassociation.org or download via www.mndassociation.org/publications For further information please see 11A – NICE guideline on MND.

Family raise money for a Cough Assist

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family effort in memory Pete Depledge has resulted in the purchase of two Cough Assist machines to help local people with MND in Somerset. Sue Depledge with her sons Shaun and Jay, their wives, Tina and Kelly and Sue’s four granddaughters Marinka, Ruby, Roxy and Libby recently presented Dawn Bayford, NIV Practitioner in Somerset with the Cough Assist machines. The new machines help people with MND clear secretions from their lungs and help their breathing. The family had aimed to raise money to buy one machine, however, they were so successful that, with a little help from the local South and West Somerset Branch, two machines were purchased. The machines have been named Louie and Lola by Sue and Pete’s granddaughter Libby. Sue said: “Although Pete needed a

Cough Assist machine, he was sent home from hospital without one as there were none available. My family and I did not want anyone else to suffer the way he did and this made us determined to do all we could to raise funds to buy a machine.

Between us we had five car boot sales, a sponsored cycle and my granddaughter made rubber band bracelets and sold them for donations to family, friends and work colleagues. I would like to thank everyone, especially our friends, for all their support.”

Credit Suisse races towards the finish line

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N September Credit Suisse Banger Rally teams visited the MND Association’s national office as part of a two-day road trip from London to Dublin. The Banger Rally was the latest fundraising activity as part of our UK Charity of the Year partnership. Teams had £500 to purchase a car and decorate it in their chosen theme. The highlight of the day was when one of

the Dumb and Dumber team members pledged to donate $15 for each member of Association staff appearing in a photo with him and his team, raising $1,125. Credit Suisse has so far raised £420,000, with funds going towards Project MinE, Voice Banking and Care Centres. Oscar Denihan, taking part in his first Banger Rally, said: “The work you do is really important. The more we can help

you facilitate support for people with MND and accelerate research to find a cure, the better.” As Credit Suisse races on towards the finish line in December, the last stretch is packed with even more fundraising activities. In October, Credit Suisse staff will participate in Silence Speaks to raise awareness of the impact MND can have on speech. Another activity is the £1 Coin Amnesty on 15 October when the old coins come out of circulation and we hope many will be donated to the Association. In December, superstar chef Michel Roux will be host and auctioneer for the Restaurant Associates Dinner, after which a host of Christmas parties and a carol concert in the Wren Chapel at Royal Hospital Chelsea will end the year on a festive note.

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Discovery of dru F

inding a drug to treat disease is a long and complicated task – this especially applies to MND, a disease that is still not yet fully understood. While clinical trials are vital to obtain licensing for a new treatment, scientists first need to find the ‘magic’ compound – a collection of molecules that together have a specific effect on our body systems, with the hope to reverse or at least slow down progression of a disease. For MND, riluzole is currently the only approved drug in the UK that can marginally decrease progression of the disease. Its mechanism is thought to work by decreasing levels of the chemical messenger glutamate, which in high levels is toxic to motor neurones. However, excess of glutamate is only one of the many faulty mechanisms that are likely to lead to the death of motor neurones and development of MND as a consequence. So how do we know which compound to test and put forward as a candidate for a treatment?

Choosing a compound Traditionally, scientists would come up with a long list of compounds that they hypothesized might work to stop the detrimental mechanisms that cause motor neurones to die. These hypotheses would then be tested either in living organisms (in vivo), such as mice, or in a living cell in a laboratory dish (in vitro). Only the successful few would then be sent for testing in further stages (that is, in clinical trials). This system has been used and improved for decades, but is very labour-intensive. It requires scientists to carefully study a large number of research papers in order to come up with a compound that might potentially reverse a detrimental mechanism in cells. Such demanding process of identifying a new compound is not only time-consuming (as identifying one compound can take up to four years) but also financially draining, and with no guarantee that it will translate into a treatment for MND. To overcome these issues, a team of scientists from the Sheffield Institute

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of Translational Neuroscience (SITraN) are collaborating with BenevolentAI. This British company helps scientists to identify new compounds using artificial intelligence (AI), making the whole process less laborious and much less expensive.

“As well as developing new scientific knowledge and hypotheses using our own AI technology, we’re also able to produce ground breaking results in a matter of weeks not years.” Jackie Hunter, the Chief Executive of BenevolentBio (subsidiary of BenevolentAI) explained the benefits of using artificial intelligence. “The amount of data is increasing exponentially, with 90% of the data that currently exists having been created within the last two years. Despite this explosive growth, scientific discovery has not changed in the last 50 years. It’s impossible for humans alone to process all the world’s available data and literature. A scientific paper is published every 30 seconds, there are thousands of new scientific publications on PubMed (search engine for biomedical and life sciences literature) every day. Consequently, only a tiny

Dr Laura Ferraiuolo

Dr Richard Mead

fraction of information is accessible, decipherable and usable at any one point in time to a given scientist. “We have developed artificial intelligence technology to solve the impenetrability of this mass of data, transform the process of scientific discovery and enable previously unimaginable scientific advances. The power of AI is demonstrated by its impact on the search for treatments in rare diseases such as MND and its potential to revolutionise the entire drug development process. As well as developing new scientific knowledge and hypotheses using our own AI technology,

ug compounds that this new approach, combined with our expertise and cutting edge research tools, might lead to effective therapeutic interventions for ALS.” So what does this mean for the future of MND treatments? Dr Mead explains the next steps of their research and how this collaboration could pay off in the future. “It is still very early days, however, if these promising results are confirmed, in the next few years we would hope to move into clinical trials with the goal of slowing down the progression of MND.

“We hope that this new approach, combined with our expertise and cutting edge research tools, might lead to effective therapeutic interventions for ALS.”

we’re also able to produce ground breaking results in a matter of weeks not years. This can only be a truly exciting proposition for anyone working in the fields of bioscience and pharmaceuticals.” Results of the screening by BenevolentAI has suggested a few compounds as potential therapeutic candidates. These were put to the test by the research team at SITraN, led by Dr Richard Mead and Dr Laura Ferraiuolo. Dr Ferraiuolo describes the collaboration between SITraN and BenevolentAI: “We were approached by BenevolentAI to test some of its AI-driven hypotheses in our MND disease models.

We tested four different compounds, two targeting pathways that we had already identified as potentially interesting, and two with targets that were new to us. The initial screening was performed in our in vitro co-culture model using patient cells and the most promising results were given by one of the newly identified targets. We then tested this compound in the ‘gold standard’ in vivo model of ALS and we observed a significant delay in disease onset. “We are extremely excited about this collaboration. Working with BenevolentAI has added a new dimension to the scientific discovery process. We hope

“W​e are ​currently working together with BenevolentAI to understand in depth all the targets of our lead compound, and identify the exact mode of action. This will help us develop a drug that has the highest efficacy and the lowest possible side effects. We will then optimise compound dose and mode of delivery to obtain the best possible results once in a clinical trial. “This optimisation process, with the validation tests, might require up to two years. Once we have a strong proof of concept, we will be able to approach regulatory bodies to start moving towards clinical trials.” The use of Artificial Intelligence for compound screening will be one of the topics discussed at this year’s International Symposium on MND.

The Research Development team is always happy to answer any questions about MND research. To find out more information, visit our website www.mndassociation.org/research or read our blog articles at www.mndresearch.wordpress.com You can also contact us on 01604 611880 or at research@mndassociation.org

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“I wanted to care for her un C LIVE Moore from Carlisle, cared for his wife Ann for seven years after she was diagnosed with MND. He made it his mission to provide the best care for her, often coming up with innovative ways that allowed his wife to communicate and stay mobile for as long as she possibly could. Clive’s dedication to his wife was recognised at The Cumberland News and Community Heroes Awards, who awarded him Carer of the Year. Their daughter, Geraldine Crook, nominated Clive for the award. “Mum’s quality of life was maintained right up to the very end, despite Dad’s intense frustrations and sadness at all they had lost. Dad managed Mum’s physical, spiritual and psychological needs throughout and, despite all the odds, kept her well and fulfilled for an exceptional length of time. He went above and beyond in his efforts to keep Mum connected to the world around her, and us to her.”

“The second thing that helped was the great support from our AV and the local branch. When you are caring for someone with MND it is important to accept help.” Clive shares his experience of caring for Ann with Thumb Print in the hope that it helps others in a similar position. Clive said: “MND took us over much faster than we expected. Very soon after diagnosis we found ourselves sleeping in the dining room because Ann could no longer manage the stairs. Early on she lost the ability to communicate with me. I would spend months researching communication aids and we tried the full range including eye gaze and Brain fingers, but because she had no eye control she couldn’t use them. “We both tried to get one method going, and, as soon as we cracked it her ability would decline. I used to read other articles from MND patients doing all sorts of things, but Ann couldn’t do anything and was very frustrated. “I was devoted to Ann and told her I loved her every day, but caring for someone 24 hours a day was hard. I would get cross occasionally. It was utterly relentless, with a constant stream of people in and out of the house. “There were two things that really

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Clive Moore and his wife Ann

helped. I changed over to personal budgets (money allocated to you personally by the clinical commissioning group following a needs assessment) which allowed me to take on other people who could sit with Ann, freeing me up to do some shopping. It really helped to escape for an hour or so. The second thing was the great support from our Association Visitor (AV), the local branch and the hospice at home nurses. When you are caring for someone with MND it is important to accept help.”

Top: Clive and Ann at their Golden wedding anniversary celebrations. Bottom: Ann at home with her daughter

Clive and Ann started a blog (www.mndexperience.blogspot.co.uk) to share their experiences and show they had not lost their sense of humour. Monday 31 August 2015 Spider and curtain by Ann God’s little joke It’s 4.30am. We are both awake and thirsty. Hubby gets up to make a drink and switches on the light. Whilst he is in the kitchen, I notice the curtains are not properly closed and there is a gap of eight or nine inches. It is getting light soon and I know it will keep me awake. Too sleepy to play the ‘pointing and guessing’ game I shoot up a quickie prayer. ‘Lord please find a way of drawing his attention to it, please.’ Hubby comes in with a cup of tea for himself and some feed for me. Whilst he is giving it to me I notice a black smudge

ntil the very end.” just below the picture rail. I point to it and hubby knows immediately what I mean. He said: “It’s a spider, but it’s not going anywhere. It’s asleep.” A few minutes later it slowly disappears behind the curtain. When my feed is finished I point again and move my finger along to indicate where it has gone. With a sigh my long suffering spouse gets to his feet. “Okay I’ll go and look for it.” He fetches a step ladder. “It isn’t here” he says, pulling back the curtain, “it’s gone back down whatever hole it came in through.” He climbs down, pulls the curtains straight and set off to put the steps away. I smile to myself noting that not only is the spider gone, but the curtains are closed properly. Nice one, Lord. Thank you. Wednesday 9 September 2015 Smiles and grins by Ann People who meet me for the first time often remark on my smile. They seem to be surprised by it, as if we were supposed to go around in doom and gloom all the time. But I find that smiling at people has a lot of advantages, both for them and for me. First of all it is reassuring. People can often be unsure how to relate to someone with MND - it is usually uncharted territory. A smile puts them at ease. Then with the ice broken, it is easy to have a friendly exchange. In some situations smiles can easily turn into laughter which I like a lot because it lightens a moment which could be rather fraught. There was a recent incident when my feeding tube became detached from the syringe and the feed splashed over both of us. We ended up with a fit of the giggles which was extremely therapeutic! In day-to-day living it is often our nearest and dearest who bear the brunt of our difficulties and so a smile often eases things for everyone. All in all, smiles are very handy things to have in your pocket – you never know when you’re going to need one. Tuesday 13 October 2015 Hoist by Clive Ann is no longer able to weight bear so the stand aid had to go. Enter the hoist. A stage I had been fearing but it turned out not as bad as I feared. Aren’t our fears always worse than the reality? Tuesday 13 October 2015 Stair lift by Clive A second stair bannister had been fitted, but now is the time for serious changes. Until the bathroom fall we had used a bath lift, but we now need a stair lift. Sadly the configuration of our stairs makes it impossible. We considered having a downstairs walk-in shower, but that would have blocked the window and made our dining room unusable for anything else. So we had had no option but to bring our beds downstairs so the carers can give Ann a bed bath. We now have our front sitting room (with a riser recliner) and our lovely dining room which has become the one where everything happens, and we both sleep, to the music of the bed motor and enteral feeding system. Tuesday 13 October 2015 Renault Traffic van conversion by Clive I cannot praise this enough. We can do so much more than is possible with a car conversion. Four passengers and a tail lift which is so easy to load up with. We can even include the stand aid, which was good for day visits at the hospice. It is an excellent vehicle to drive. I bought it second hand from a guy who specialises in ex Motability vehicles. £7,500 and only 23,000 miles. So glad I didn’t go for a car conversion. Tuesday 4 July 2017 My queen passed away on 25 April as a result of a chest infection turning into pneumonia. Having been through a lot these seven years past, particularly in communication, I am happy to help in any way I can other people living with MND.

New Carers’ Alert Thermometer to help carers

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UR work on developing new ways to support carers continues with the roll-out of a specialist tool. The Carers Alert Thermometer (CAT), developed at Edge Hill University, is a series of ten questions to help identify carers’ needs and support their health and wellbeing. The tool is to be completed by carers, alongside someone in a support position, such as an Association Visitor (AV).

“The Carers’ Alert Thermometer (CAT) is proving to be a useful recource for identifying carers’ needs, enabling us to increase our support, if necessary, and signpost the carer to other services.” The MND Association worked closely with Edge Hill University on piloting the tool with AVs who reported finding it useful in addressing carers’ needs in a structured and collaborative manner. They felt it allowed them to gently but systematically explore the feelings of carers and plan together any additional support needed. The new tool was also valued by carers who felt it would be useful for monitoring change over time and would provide them with evidence to take to multi-disciplinary meetings to advocate for more support. Regional Delivery Manager for the South, Hilary Fairfield said: “The Carers’ Alert Thermometer (CAT) is proving to be a useful recource for identifying carers’ needs, enabling us to increase our support, if necessary, and signpost the carer to other services. We are aiming to roll the use of the CAT tool out more widely across England, Wales and Northern Ireland, to help us support and reach out to even more carers in the future.” If you would like more information on the Carers Alert Thermometer please contact Neil Drinkwater, Regional Care Development Adviser on 07831 349398 or email neil.drinkwater@mndassociation.org

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Neurologists call for end to unfair CHC funding

“I am furious that I had to go through so much upset and red tape. I can still speak out, just! But I worry for those who can’t do that, what happens to them?

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eports from the National Audit Office and Continuing Healthcare Alliance have identified major problems with the NHS Continuing Healthcare (CHC) funding. Increasingly, people are being turned down for CHC support despite meeting eligibility criteria, or are being offered support that simply does not meet their needs. A postcode lottery for access to CHC across the country means that the support people receive is highly dependent on where they live. Underfunded local systems are failing to provide the support that people desperately need and are entitled to by law. In response to these issues, a group of

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clinicians have written to the Secretary of State for Health to call on him to address major concerns about CHC. The letter to Jeremy Hunt, has been signed by 19 clinicians including consultant neurologists, directors of MND care and researchers. It says patients with MND are being denied NHS funding which is a ‘vital source of support for people with the most severe health-related care needs to go on living a full life and maintain their independence and wellbeing for as long as possible.’ The clinicians state it is not acceptable to target the most severely disabled patients for savings by unfairly denying their eligibility for CHC support, or by placing an

arbitrary cap on the care they can expect to receive. They end the letter by inviting Jeremy Hunt to a meeting and ask that he addresses this issue as a matter of urgency. One of those denied CHC funding was Claire Brown, who is living with MND and has 24-hour care to help her dress, bathe and feed herself. The 60-year-old former teacher still has her voice, albeit weakened by MND, and is determined to speak up on behalf of the thousands of other people living with the condition. Claire said: “When I was diagnosed with MND I was originally given a life expectancy of around 14 months. It had taken so long for me to get a diagnosis and my breathing was already compromised. I

spent a lot of money on the house making sure I could stay here – digging deep and funding most of it myself, but it became clear I would need support from carers. So with the help of my local hospice I applied for Continuing Healthcare and I was fast tracked and approved.

“If you are fighting MND the last thing you need is to be fighting the system which is meant to support you too.” “I re-applied successfully once more and then in the third year nothing happened. I had no letter but in January I had notification that my review was overdue and that someone was coming out to see me. I assumed that was a scoping meeting but it turned out that the visit by one person was the review! She asked me questions for four hours and seemed to have little knowledge of MND or my situation. “A month later I had a letter saying I was no longer eligible for CHC. Nothing had changed – my MND had not got better! In fact, I was really quite ill and exhausted with infections and initially

just didn’t have the energy to fight the decision. But with the support of my care team we requested a review. This time two people came out for the review and they were faced with a room full of people that help manage my care, and my daughter too. “My CHC was reinstated with no explanation or apology. I am currently reviewing my care package and looking at the need for more live-in support. Having the infections and not even being able to lift my head gave a feeling for what I will need to put in place and be prepared for when I get weaker from my MND. “I am furious that I had to go through so much upset and red tape. I can still speak out, just! But I worry for those who can’t do that, what happens to them? Fighting MND is one thing, but having worked and paid high tax rates all our lives my family just can’t understand how I can be treated like this. “People with a terminal condition should not have to jump through these hoops to ‘prove’ how ill they are time and time again. It causes so much unnecessary worry for people who are

Battle in Leicestershire to stop CHC cuts We’ve been actively opposing plans to dramatically cut CHC in the Leicestershire and Rutland area. A massive £29 million pounds is being withdrawn, and new rules introduced to limit the amount of care provided in people’s own homes. This will mean heart-breaking battles to keep CHC, and the threat of people being forced into care homes against their wishes. Through the use of press, support from local MPs and social media, and working with partners such as the Spinal Injuries Association and Parkinson’s UK, we’ve been successful in getting two of the three clinical commissioning groups (CCGs) responsible to rethink the changes. Disappointingly East Leicestershire and Rutland CCG seem determined to push ahead with the changes regardless of their devastating impact. The fight continues locally. Nationally we will continue to campaign for an effective CHC system that fully meets the needs of all those eligible for support, regardless of where they live. If you would like to find out more about our vital work in this area please contact: Alex Massey, Policy Manager at alex.massey@ mndassociation.org

often in a very vulnerable position. Delays will mean they might not receive vital support to help try to maintain some sort of quality of life. “If you are fighting MND, the last thing you need is to be fighting the system which is meant to support you too. I’m so grateful to have this level of support from so many professionals – but they should be able to focus on doing their jobs; looking after people and doing cutting edge research and not have to lobby the Secretary of State.” Chris James, Director of External Affairs at the MND Association said: “Our campaign MND Costs highlights the financial impact of living with the disease. It’s crucial that people with MND have the support that they need to maintain a quality of life at home. The fact that there is capping of Continuing Healthcare is a terrible added strain on people that are already dealing with the disease. We wholeheartedly support this letter written by neurologists, many of whom are world-renowned experts in MND research and care, and we urge Jeremy Hunt to listen.”

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yourstories

“When Sam lost his voice, I found mine.”

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Sam was diagnosed with MND over five years ago. His wife Dena, talks about how, as a carer, asking for help is one of the most important things she has learnt to do.

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ENA said: “Sam was the life and soul of the party. He was loved by everyone at the school where he worked as a Behavioural Mentor. An ordained Pastor and a Gospel DJ, he was widely known around Leicester and beyond. I was the quiet one, happy to stay in the background, but MND has changed all that. “The day before Sam’s birthday we were told he had Progressive Bulbar Palsy (PBP), the rapid form of MND. By this time his speech had already deteriorated, he was struggling with co-ordination and was using a rollator. The diagnosis was so final and there, that day, our entire world stopped. How were we going to tell our family, Sam had just been given months to live? “That was five and a half years ago and I am delighted to say Sam is still with us, albeit much changed. MND took away a part of him. It changed all of us, as we watched him deteriorate, and it hugely affected our three children, Natasha 27, Ashley 26 and Jamaen 22. “We have nearly lost Sam a number of times. I remember a year after being diagnosed, when Sam was transferred from the hospital to the hospice. He was given less than 24 hours to live. The children raced back from a holiday to be at his bedside. He laid hands on every one of us to say goodbye – it was heart-wrenching. But, there was something in him that was not ready to go. “I have tried so hard for us to continue to have a normal family life, but it is hard. In 2013, after a year of hospital admissions, and one infection after another we needed a break and Sam wanted to go on holiday. When I spoke to the care agency about going away there were so many obstacles – it seemed impossible. The impression we were left with was that we shouldn’t even consider holidays anymore with Sam’s condition. One day I spoke to our Association Visitor,

yourstories Jane, saying that I didn’t know how much longer we had left with Sam, and how I really wanted to make the most of our time together. She contacted the MND Association who kindly funded a holiday. It was the most amazing experience and gave us such a boost. The MND Association totally recognised how important it is to spend time together as a family and make memories. They made what had seemed impossible, possible. They made sure the care staff had accommodation and really looked after us. Every day is precious and you can see the MND Association really understands that. “I gave up work to care for Sam, existing on carers allowance. Sam’s benefits just pay the bills and we live on the breadline. That’s why the MND Association has been such a help. I was brought up to be proud and to live within my means, but gradually I realised that if I didn’t ask for help, Sam wouldn’t get the things that could make his life better. Asking for help was one of the hardest pills I had to swallow. However, by doing that, and by fighting to get the best care for my husband, I really believe it has helped Sam to still be here, over five years after receiving his diagnosis.

“We fought the local authority to help fund an extension so that Sam could have a bedroom and bathroom downstairs and remain in the family home.” “I can’t tell you how many letters I have written. I was challenging everyone. I knew what Sam needed and saw it as my job to make it happen. We fought Continuing Healthcare (CHC) to get more nursing support at home. We fought the local authority to help fund an extension so that Sam could have a bedroom and bathroom downstairs and remain in the family home. Of course, there was a risk he would die before the extension was built (something I think the Local Authority were concerned about) but even if he did, at least he could see that we were doing everything we could to keep him at home. It has been three years since it was built and every year I send the Local Authority a photo of Sam enjoying the extension. “It takes a lot of people to care for Sam. Every day we have at least six people in the house, not counting the professionals. He can no longer speak, he can’t move and has been on a NIV machine 24 hours

heard or read our story kindly helped us raise enough money for the chair. We both cried when the chair came. Sam stood up for the first time in years and looked at himself in the mirror. “I know I am Sam’s lifeline. I have given up everything to be here for him and keep him at home. I do whatever I can to make life as normal as possible and make it as homely as possible, because we don’t know how long we have left. He has accepted his life now. Our love for each other and the family has kept us going.

Sam’s new standing wheelchair

a day to help him breathe, for over four years. It sounds strange to say, but apart from that, he looks well. However, I know he is still very poorly. He is like a Mercedes Benz on the outside, with a three wheeler engine on the inside. Despite this he is still engaging with the world, and that is what keeps us all going. “Three years ago, we saw an advert for a standing wheelchair in the newspaper. We contacted the company who came out and assessed Sam. I knew it would take a long time and there was always the risk Sam could die before we got the chair, but as always, that didn’t deter me. “I contacted the occupational therapist, physiotherapist and respiratory nurse to observe Sam in the standing wheelchair. They saw for themselves how beneficial it was for him. They filled in the forms for the CHC application and we waited for the decision. Nearly three years later the decision was made – funding was rejected. “It was a big disappointment. We invited the rep out again. If for nothing else, trying it out again gave Sam an opportunity to stretch. The rep said other families who had been rejected funding had raised the money themselves. We decided to give it a go. I took a deep breath and put our story on JustGiving. Within a few hours people started to give. We were so excited, every pound donated was a pound less we had to find. “I contacted the MND Association. Once again it helped us when we needed it the most by providing a contribution toward the chair. This helped, but we still didn’t have enough. I decided to risk it and paid the deposit on the basis I would find a way to secure the remaining £2,000. I went on BBC Radio Leicester and was interviewed by the Leicester Mercury. People who

Sam and Dena with their three children

“I will never forget the day he lost his voice. We could see it coming. It was then I realised if I didn’t speak up, Sam would never be heard. When he lost his voice, I found mine. I had to learn about the workings of the NHS and CHC funding, because it was through knowledge, that I would be able to support my husband. “Every time he lost the ability to do something, I would focus us on what he could do. I kept in regular contact with his occupation therapist, physiotherapist and MND nurse. I learnt not to be afraid to ask for help. I will always fight Sam’s corner and every day I say thank you for another day with my husband. There is nothing more important than hope when living with MND.” The standing wheelchair had been trialled and assessed as meeting Sam’s needs by professionals, however we know it is not suitable for everyone. The most suitable wheelchair for a person with MND can only be determined following a full assessment. For more information on wheelchairs please email wheelchairs@ mndassociation.org or watch a film on our website www.mndassociation.org/ wheelchair

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What is happening at Speak:Unique? 1C

Where can I find the information I need? Information for people with or affected by motor neurone disease or Kennedy’s disease Finding appropriate information is important, as needs can change quickly. However, there is a lot of information available out there, and this can feel overwhelming. This information map can guide you to appropriate resources to help youmap access suitable 1: The information support. You don’t need to read every publication on offer, but you may wish to use this information sheet to start your search, or for further information at a later date.

1:

The information map

2:

Our support

Our information

Our services

There are three sections:

• MND Connect • Regional services • MND care centres and networks 3: Further support • Support services • Communication aidstelephone numbers. We have included a number of websites, email addresses and you OurIf support service do not have internet access or need further help, contact our MND Connect helpline (see Our services in section 2: Our support for contactservice details). • Wheelchair • Benefits advice service • Membership

• Our website • Information for people with and affected by MND • Information for children and young people • Information for professionals • Information about MND research • Social media and online

This symbol is used to highlight our other publications. To find out how to access these, see Further information at the end of this sheet. This symbol is used to highlight quotes from other people with or affected by MND.

Where next?

The MND Association has been certified as a producer of reliable health and social care information. www.england.nhs.uk/tis

1

Benefits, finance and work

NICE Guideline

Further support Social care

Healthcare

Useful organisations

Low cost apps

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Too much information?

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E produce a lot of health and social care information about MND – the widest range in the UK. Our provision is seen as credible and effective, but do we really need so much of it? The answer is ‘yes’, to meet changing needs with MND because each person seeking information may need different answers to their questions. Carers and family members, including children and young people, also need specialist support. Not all of our information may apply to everyone, but it will be important to someone, at some point. Being informed about available support can help with decision making and planning, and improve quality of life. However, information can be absorbed at your own pace. Some readers may only want essential facts, while others tell us, ‘I wanted to know everything.’ Nevertheless, when first diagnosed, the number of available publications can feel bewildering. In response, we have produced an information map, called Where can I find the information I need? This is available as Information sheet 1C or online at: www.mndassociation.org/infomap This map provides starting points for our information and services, and how to get further help with other key providers. You can then return to our provision for more detail when needed. Order printed copies from our MND Connect helpline: 0808 802 6262 mndconnect@mndassociation.org

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Jason with some of the firemen who donated their voices to give him back his Yorkshire accent

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N the spring edition of Thumb Print we ran a story about Jason Liversidge, who is living with MND. He took part in a pioneering voice banking project, being developed in Edinburgh, called Speak:Unique. Since then, the team in Edinburgh has continued to collect data on the use of the technology and software involved in the project, as well as user feedback, which is currently being piloted in three health boards across Scotland. It is anticipated that this data collection should be completed by the end of this year.

Depending on the analysis, the project will be able to move one step closer to developing a service for patients. There will be a need for regional accents to form a database for the project, and the team at Edinburgh and the MND Association are in talks about how we may be able to collaborate on this. In the meantime, you can find out more about speech and communication, including current voice banking options, via the MND Association website at www.mndassociation.org/speech or by contacting the MND Connect helpline on 0808 802 6262.

“To get support like this, really lifts your spirits.”

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atima has been caring for her Grandma since she was diagnosed with MND. She is very ill and is having end of life care. Fatima shares her experience of recently applying for a children’s and young person’s grant and how much the support has meant to the family. “My children and I feel blessed to have Grandma at home with us, but it does get hard. When I spoke to MND Connect they told me about the children and young person’s grant. The grant was so easy to apply for and I ended up with grants for each of my five children. This enabled me to buy the older ones computer desks, a laptop and iPad and the younger ones games. They were absolutely amazed when they arrived and are so thankful. “Life is very tough when you have someone so ill at home. To get support like

this really lifts your spirits and makes you feel happy. The children know a lot about MND, thanks to the information produced by the MND Association. This support has made life that little bit easier.” We know that many families face tough choices about how to tell a child about a loved ones diagnosis of MND. It is often best to be as open and honest with children as you can be. Our age specific information is designed to help with these difficult conversations. Finding the right information, support and services immediately after diagnosis can help the whole family. If you would like to access information and support visit our website www.mndassociation.org/ypinfo or contact 0808 802 6262 or youngconnect@mndassociation.org

Our focus is on “What we are doing today” for people with MND

Alun Owen

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ollowing on from my previous article in Thumb Print I was very pleased to receive some emails and cards thanking me for raising awareness of the work of volunteers and about the support the MND Association provides. It is very important to me to celebrate the vital contribution of our volunteers whenever I can. Equally, I am immensely proud of how all our fundraisers, volunteers, along with supporters, staff and our other members work together to make our Association the very special charity it has become. I am writing this the week after attending our first Board meeting since the AGM last July. There has been a

significant change in the membership of the Board with three new trustees, each bringing their own experience of MND. It is also means that I have only three Board meetings left before I step down as Chair in July 2018 and it was therefore, good to see these new faces contributing to the discussions on moving forward. The resulting Board of Trustees meeting felt very positive with much of our conversations focused on ‘What we are doing today’ to help people with MND – something that I know is of major importance to all of the MND family. One of the highlights of the meeting was an update of the fundraising by Credit Suisse. Our UK Charity of the year partnership with Credit Suisse has been very successful. In the last eight months, over £420,000 has been raised through the partnership and this will be split over three key areas: voice banking, research and our care centre programme. This money is already having an impact with the opening of the Norfolk MND Care and Research Network and the appointment of a co-ordinator to lead on our voice banking project. This new job with the MND Association will further develop the plan on how we enable people with MND to communicate with their families, friends and carers. The project will provide the technology and

training needed – via specially trained voice-banking volunteers – to ensure we minimise the terrible impact of losing your voice. This project is one that feels especially personal to me. Sadly, voice banking was not available when my partner had MND. Because he lost his voice so quickly, he didn’t enjoy it when visitors were talking amongst themselves or if I was on the phone. By the time he had typed a response on his Lightwriter the conversation had moved on or he was just irritated by the fact he couldn’t speak. This left him incredibly frustrated and waving at people who were talking to make them stop! Voice banking coupled with faster talking aids would have made such a difference to him. This year’s support from Credit Suisse is having a huge positive impact on our work today and will also help the development of long-term projects in the future. As well as large corporate partnerships like this, it is the ongoing and long term activities of all our fundraisers and supporters that enable us to plan the development of all our services for people affected by MND. It is the job of the Board of Trustees to check that the MND Association is bringing all those activities together and making sure the vital money you raise is being used in the best possible way for people affected by MND.

Welcome to our new Association trustees

Tim Kidd, Honorary Treasurer As a Chartered Accountant, Tim has worked at senior board level in financial services and private equity backed business. His father died of MND in 2010. Tim is currently executive director of a financial services company.

Emma Adams Emma was a Senior Nurse in the NHS specialising in intensive care for 12 years and worked for 16 years in sales and marketing. Emma’s husband Simon has MND and they have a six yearold son.

Siobhan Rooney Siobhan trained as a Registered Nurse, Midwife and Health Visitor. Siobhan’s husband died of MND in October 2009. She is a member of the Northern Ireland Branch Committee, a Branch Contact, and an Association Visitor.

Katy Styles Katy has volunteered with the East Kent Group for five years and three as a Campaigns Contact. Katy’s husband Mark, has Kennedy’s Disease which has similar symptoms to MND.

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Make your mark on MND

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e are excited to announce AMBRoSIA (A Multicentre Biomarker Resource Strategy in ALS), our biggest ever research project, is recruiting its first participants. Spanning three sites in the UK (Sheffield, London and Oxford) and over three to five years, this project aims to recruit 900 people with MND, as well as 450 healthy volunteers (out of which 135 will be firstdegree relatives of people with MND). By collecting biological samples such as blood, skin, urine and cerebrospinal fluid, the researchers will create the largest collection of MND samples in the UK. Such a vast collection will allow researchers to investigate biomarkers of MND – that is, a unique fingerprint of MND that can be measured in the body. Researchers hope these biomarkers will be able to distinguish

between the different types of MND and the hallmarks of each type (for example, people with slow progressing disease form versus fast progressing form). Having a unique set of biomarkers for MND (and ideally, its sub-types) would mean an easier and faster diagnosis of MND as well as advanced understanding of the disease, consequently leading to development of effective treatments. At the moment, the research centres recruit participants directly from their clinics. However, if you would like to volunteer to take part in this study, you can still be recruited by the London study site – for more information, visit www.mndassociation.org/get-involvedin-research or contact the Research Development team at research@ mndassociation.org or on 01604 611880.

Symposium planning underway

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HE MND Association organises the International Symposium on ALS/ MND, the world’s biggest research conference on the disease. Last year, over 1,100 researchers, clinicians and healthcare professionals attended, making it the largest in our history. We know that the key to defeating MND lies in fostering strong collaboration between leading researchers around the world and sharing new understanding of MND. We also know the care received by people living with MND today can be

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greatly improved by health and social care professionals sharing their learning and understanding on how to best manage the disease. The conference takes place in December every year in different cities around the world. This year it will be held on 8-10 December in Boston, USA. Work began on the Boston conference in January. Plans are now well underway, with the programme of talks decided and available for people to look at on our website. Over 700 people have already registered to attend the

conference, and the Symposium abstract book will soon be sent to the printers. During the lead up to the conference we will be sharing ways on how you can follow what is happening as the conference takes place. This will include a section on the Association’s website about the Symposium and live updates on Twitter – from the @mndresearch account or using #alssymp. We will be reporting back on some of the highlights from the Symposium in the winter edition of ThumbPrint.

Recruitment for new clinical trial

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new clinical trial, part-funded by the MND Association, started its recruitment in the UK in June this year. The MIROCALS trial will investigate the effect of low-dose Interleukin-2 on the progression of MND. This drug is thought to alter aspects of the immune system, which may play a role in the speed at which MND progresses. Interleukin-2 is already used to treat certain forms of

cancer, but at much higher doses than will be used in MIROCALS. The trial aims to recruit 216 people who were recently diagnosed with ALS, the most common form of MND. The crucial criterion for recruitment is that people must be newly diagnosed and not currently taking riluzole (riluzole will be provided to everyone at the beginning of the trial). Due to the design of clinical

trials however, only half of participants will receive Interleukin-2, while the other half will receive a placebo. The selection process behind this is completely random and blinded and so neither the participants nor the doctors will know who belongs to which group. You can read more information in our Information Sheet DA: MIROCALS or visit the dedicated website www.mirocals.eu

Professionals caring for people with MND need support too

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ollowing the launch of the Association’s education strategy in 2016, we have introduced several new initiatives to ensure professionals caring for people with MND are helped to provide the very best care. These include: · an e-newsletter, which is delivered to more than 1,700 professionals every month

· an education bursary of up to £250 towards continuing professional development · advanced masterclasses on assessment of cognitive change in MND in nine regions · a national education conference.

What difference has this made? More than 200 professionals are now accredited to assess people with MND using the Edinburgh Cognitive and Behavioural ALS Screen (ECAS). This tool

is used to assess changes to thinking and behaviour that affect some people with MND. A formal evaluation is also being carried out by the facilitators. 28 professionals received our bursary funding to attend a range of MND-related events. We will be asking them how this has influenced their practice.

What do professionals think? Everyone who attended our national events said they would recommend them to a colleague and also rated them as either excellent or good. Speech and language therapist, Jennifer Benson said: “The cognitive change masterclass was brilliant. It was one of those courses where you could change your practice straight away. We have put the ECAS into our pathway for newly diagnosed patients.” Speaking about the education update, Jo Joyce, MND clinical nurse specialist

said: “The regular updates I receive from the MND Association are so useful. It is brilliant to be abreast of new events and initiatives ‘hot off the press.’ They are always passed to our multi-disciplinary meeting which is held twice monthly.”

“The cognitive change masterclass was brilliant. It was one of those courses where you could change your practice straight away.” To find out more about our support for health and social care professionals, visit www.mndassociation.org/professionals You can also access our information resources at www.mndassociation.org/publications Hard copies can be ordered from MND Connect helpline on 0808 802 6262 or email mndconnect@mndasociation.org www.mndassociation.org

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Surf, safari and the slopes at

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ncreasingly virtual reality headsets are being used to give people the chance to experience the world from the comfort of their chair. By simply wearing virtual reality glasses, people are ‘virtually transported’ to a completely different location, with a 360 degree view and activity all around them, so they are able to freely roam and experience it as if they were there in person. Interested to see people’s responses to this technology and if it could have a therapeutic benefit for people living with MND, the MND Association joined forces with Flix Films to make it available to attendees at our Regional Conference in Ealing. The South and East Joint Regional Conference, held in September introduced people living with MND, carers and family members to the exciting new opportunity to see the world and participate in extreme sports like surfing and skiing virtually. Some even went on safari or enjoyed a whistle-stop world tour. John Small, who is living with MND took

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on an extreme challenge in the form of virtual reality surfing. John said: “The experience was absolutely wonderful. This is my first time doing anything like this. I felt so close to reality – as if I was surfing myself. I can definitely see the value in virtual reality for people living with MND, especially if they want to do something they like to observe; it would make a significant difference in their lives.” Once a keen sailor, 75-year-old Frederick Smith, who had to take an eight-year break following his late wife’s diagnosis of MND, also opted for the waves. Frederick said: “It was an excellent experience. I really felt I was there.” As to whether his wife would have wanted to experience virtual reality, Frederick wasn’t too sure. “She didn’t have time for all this new technology,” he said, “She would have wanted to go out and experience the world for herself.” For those who didn’t have an opportunity to travel due to physical or financial reasons, the benefits

the Regional Conference were obvious. “My grandmother has been diagnosed with MND,” said Soha Hussain. “She is not here today but I would love it if she tried virtual reality. The experience was fun; very different and very relaxing. The sound effects as well get you into a very different atmosphere. I can see why people in hospices would like this as it was quite soothing.” Richard Pickford-Gordon from London, also living with MND, was keen to highlight the potential virtual reality had to provide relaxing experiences as well as extreme ones. Richard said: “I would recommend having a tropical forest because it is by far and large a very different experience to what you get in the UK. As I said to someone, when things get too bad, just set up the tropical forest, make yourself a cup of coffee and watch the mist going up early in the morning. I think when you have the dawn chorus, especially in a tropical setting it would be beautiful.” David Setters, living with MND opted for the experience entitled ‘Explore the World’ – a 3-minute trip around the world – taking in the skyscrapers of New York, Arctic glaciers, African savannahs and more. David said: “I hadn’t used virtual reality before - it was fantastic. The highlight for me was New York because I used to go to there on business, so I thought we might go down and walk through the concrete canyons, but then we moved on to Africa which was very nice. It was very realistic. I felt I could have reached out and touched the animals. It helps to replace, even if for just a moment, some of the things you could do before you lost whatever faculties you’ve lost.”

certain things. I am getting on a bit now and this is the first time I have experienced it, so surely younger people would appreciate it.” Although disappointed Claudia Schiffer was nowhere to be found, Mukesh Arjan, living with MND, was amazed by his virtual world trip. Mukesh said: “The highlight for me was the safari as well as the Antarctica. It was like floating in a hot air balloon – the giraffes, the glaciers. It was a fabulous experience.” Flix Films are currently undertaking studies in partnership with Royal Trinity Hospice, MND Association, and other organisations with the aim of understanding how virtual reality can have an impact on people’s wellbeing. They are also investigating how to create specialist virtual reality material that will not only help to improve the quality of life for people living with debilitating conditions, but also allow for a better and more real experience when training those who care for and work with patients. Held throughout the year, our regional conferences give delegates the opportunity to hear the latest news in care, campaigning and research. Our next conference will be on 11 November at the York Racecourse Hospitality and Events.

“Virtual reality was amazing. The sound effects made it even better. I really like elephants so the highlight for me was seeing them roam about – that made my day!” Visiting Africa and watching the elephants proved to be very popular with many people attending our Regional Conference. Ridwan Yusuf a new MND Association volunteer said: “Virtual reality was amazing. The sound effects made it even better. I really like elephants so the highlight for me was seeing them roam about – that made my day! It could be helpful for people living with MND, especially in the later stages, when they feel like going out there and experiencing something.” Edward Dente, who is living with MND was another virtual reality novice. Edward said: “It would be really nice for people living with MND who have never experienced

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How we’ve invested t Funding UK participation in MIROCALS clinical trial

£7.2on

Accelerated screening of UK DNA samples for Project MinE

milli d raise

Creation of UK Stem Cell Bank

RESEARCH TOTAL SPEND

£ 4.7m

Initiated AMBRoSIA biomarker study

Establishing our 21st MND Care and Research Network and initial funding for our 22nd

Development and national roll out of a welfare benefits service

Funding resources for children and young people

Developing pathways of care and assessment for psychological support

Creating a communication aids service

CARE TOTAL SPEND

£555,000 Development of educational materials for health and social care professionals

Funding 10 specialist MND practitioners

the ice bu cket windfall

Development of mobile-friendly membership magazine (Thumb Print)

Two national awareness raising campaigns

CAMPAIGNING AND RAISING AWARENESS TOTAL SPEND

Resources to support local and national campaigning

£305,000 Developing new volunteering roles

VOLUNTEERING TOTAL SPEND

£120,000

Funding volunteering recruitment campaign (STRONG) Training Association Visitors (AVs)

TOTAL SPENT SO FAR

£5.6 million

*Figures as of 31 August 2017

From the big smoke… to the city of love Sign up before 30 November and save £50 off your sponsorship pledge. Registration fee is £125 and minimum fundraising pledge is £1,750 before 30 November 2017 and £1,800 thereafter. If two countries in three days isn’t your cup of tea, you could still cycle for the MND Association in 2018 in three great cities. We have places available in London, Liverpool and Glasgow for the 50k and 100k Nightrider Cycle in June and July 2018.

F Sally Light and the team arrive at the Champs-Élysées in Paris

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oin the #TeamMND community for an exclusive cycle from London to Paris and the chance to watch the final day of the iconic Tour de France live. Follow in Sally Light, our Chief Executive’s tyre tracks by signing up to ride 335 miles from the big smoke to the city of romance in aid of the MND Association. You have the chance to join a team of 25 or more fellow #TeamMND supporters to cycle the three day route from 26-29 July 2018.

“There was a real buzz to be part of #TeamMND. We were all of a mixed bag in terms of ability but we all did it and supported each other.” The team will be joined on the challenge by an MND Association representative and we are aiming to raise over £45,000 for the MND Association with this incredible event. Our CEO was part of a team of eight who completed the cycle this July. They included MND Care Co-ordinator Rachael

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Marsden, Consultant Nurse for MND Jan Clarke, Consultant Neurologist and Trustee, Dr Nikhil Sharma and supporter Mathew Robson, who is doing 17 events in 2017 in memory of his friend, Gordon Cooney. Sally said: “There was a real buzz to be part of #TeamMND. We were all of mixed bag in terms of ability, but we all did it and supported each other. We were all in it together and it made a huge difference.” Sally, who had the chance to see Chris Froome riding along the ChampsÉlysées in the Tour de France, added: “It was wonderful. Although it is very different to our ride, it gave us an idea of what those cyclists go through and what amazing athletes they are. It made us reflect on our own little Tour de France. We really did feel like #TeamMND and we were all very proud to be cycling for the MND Association.” If you would like your very own yellow jersey moment, sign up to join #TeamMND for 2018 now: www. mndassociation.org/mnd-event/londonto-paris-cycle-challenge

elicity Rigling raised £2,600 in memory of her sister after she cycled through the capital after dark in Nightrider London 2017. She said: “The organisation for the Nightrider was superb and the MND Association support was very inspiring. We loved the varied route, London sights and atmosphere, and were blessed with perfect weather giving a glorious sunrise at Tower Bridge. Such a memorable night!” Take in one of these three amazing cities at night to help us raise over £20,000 for the MND Association. Visit: www.mndassociation.org/mnd-event/ nightrider-challenge

“The organisation for the Nightrider was superb and the MND Association support was very inspiring.” Registration fee is £39 and the minimum fundraising pledge is £175.

Felicity Rigling cycles by the London Eye

74 year old jumps 15,000 feet

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inda Brewer, 74, from Lancashire braved her fears to jump from15,000 feet through the skies to support the MND Association. She was joined by her daughter-in-law Lisa and granddaughter Ella. Linda’s son-in-law Darren is living with MND. Linda said “As we drove up to the airfield I could see other people doing their skydives. They were like little dots in the sky! I thought to myself ‘that’s going to be us in a minute!”

“I wanted to gain as much publicity as possible to support the MND Association so I knew I . had to do something extreme.” After her initial nervousness Linda relaxed. “It was an incredible experience, the views were absolutely amazing. I kept my eyes open and even managed a somersault halfway down. I could see

Darren beaming at us as we came down. It was a really emotional day but I am so pleased we did it. “Some of my family and friends thought I was crazy to attempt a skydive at my age. One of my friends even offered me £100 not to jump! Getting my medical signed off was a challenge too. But I wanted to gain as much publicity as possible to support the MND Association, so I knew I had to do something extreme.” Linda’s plan worked. The local newspaper featured articles about the challenge, both before and after the jump, and the trio received an incredible amount of support from family, friends, and the local community. Together they have raised over £6,000, and because they funded the cost of the dive themselves, every penny raised will go directly to the MND Association. If you fancy undertaking a skydive and visit mndassociation.org/skydive and join #TeamMND

Left to right: Ella, Linda and Lisa pictured with Darren and his wife Mandy before the jump

Thank you – your support

for Silence Speaks is amazing!

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uring October, hundreds of you are staying silent, in solidarity with 80% of people living with MND who experience speech difficulties. We are truly grateful to you all for miming, signing, typing and using voice apps, instead of using your voices. You know the impact of voice loss for people living with MND, their families, friends

and colleagues and have joined the Silence Speaks movement to raise awareness and a huge amount of funds. You’ve experienced humility, frustration, kindness and enormous empathy – we really can’t thank you enough! Interested in taking part but not yet registered? You can still get involved in the movement by signing up at www.mndassociation.org/silence-speaks

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Stephan Burn

£293,000 benefits claimed so far

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Benefits advice service (free to call) England and Wales

0808 801 0620 Northern Ireland

0808 802 0020 Taking a break from Strictly to attend reception

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V presenter and MND Association patron Charlotte Hawkins is taking part in top BBC show Strictly Come Dancing which started on 23 September. But Branches and Group volunteers will be able to meet Charlotte in person on 17 October when she will be taking a break from Strictly to attend our Parliamentary reception in Westminster, as part of our MND Costs campaign. Charlotte will talk about her dad’s diagnosis of MND and will ask the MPs to show their support for our new campaign. We will share more news on the event in the winter edition of Thumb Print.

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Volunteers attend record-breaking campaigning weekend

Volunteer campaigners meet for a weekend of campaigning

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n 14-16 July in London we held our annual training and networking weekend for Campaigns Contacts – our team of volunteer campaigners who raise awareness of MND and help improve the care people with the disease receive at a local level.

“The weekend did not disappoint; the right note was set with a warm welcome from Association staff and an introduction to craft and activism.” A record-breaking 28 volunteers attended the event, making it the biggest weekend yet. One first-time attendee was Sue Heal, Campaigns Contact for the Norwich and Waveney Branch. Sue said: “It all started when we persuaded Norfolk County Council to adopt the MND Charter back in January. “After a celebratory cup of coffee, I was interviewed for the role of Campaigns Contact and asked to keep a weekend free in July for training. “Over the coming weeks and months I began to share my campaigning ideas online and in teleconferences with staff and other volunteers. I looked forward to meeting the people behind the names. Being a novice, I was interested in talking with experienced campaigners and learning from them. “The weekend did not disappoint; the right note was set with a warm

welcome from Association staff and an introduction to craft and activism. We also practised conversations with MPs about the new MND Costs campaign. Having hated role-play exercises since my teacher training days, I was surprised to find myself enjoying it; I have never liked to lose! It also reminded me of the importance of being well-briefed. “By the end of the weekend, I felt accepted as part of a very friendly and supportive team of staff and volunteers. I came away inspired to enthuse others in the branch to catch the ‘campaigning bug’.” If you’re interested in finding out more about volunteering as a Campaigns Contact in your local area, contact us on campaigns@mndassociation.org Stephan Burn

UR new benefits advice service has helped 278 people affected by MND in its first three months. It has identified benefits with an annual value of £293,000 that people affected by MND were eligible to claim, provided advice and guidance on how claims should be made and worked directly with and on behalf of 29 people to resolve particularly complex benefits issues. While the majority of enquiries were made by phone, 65 people used e-mail and 16 the web chat facility. We will continue to develop the service with the introduction of simultaneous interpreter, type talk and British Sign Language via a video link facilities.

Sue Heal, Campaigns Contact

All-Party Group on MND elects officers

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HE All-Party Parliamentary Group (APPG) on MND held its AGM in Parliament in July and elected its officers for the coming year. Madeleine Moon MP (Bridgend) was elected as Chair, Paul Blomfield MP (Sheffield Central) and Mary Robinson MP (Cheadle) as Vice-Chairs and Chris Evans MP (Islwyn) as Secretary. The MND Association will continue to provide the secretariat to the Group. As Thumb Print went to press, the Group was due to launch its report into access to Personal Independence Payment (PIP) for people with MND. More details to follow in the next edition.

(Left to-right) Chris Evans MP, Justin Madders MP, Madeleine Moon MP, Cat Smith MP, Rosie Duffield MP, Jo Platt MP

“MPs need to understand the needs of carers.”

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ris Hoskin from Wigan, who has lost four members of her family to MND, attended an event in Parliament, alongside MND Association staff, to mark Carers Week 2017. At the event, organised by Carers UK, Cris spoke to many MPs about her personal experience of MND. Cris said: “Attending this event was a really positive and worthwhile experience. It is important to speak to MPs about carers’ issues, such as benefits and the assessment process, so that they have an understanding of the needs of carers when they are formulating and/or voting on legislation that impacts on carers. “It’s really important that MPs hear our personal stories, as this brings the issues to life for them and we are not just statistics. If we are their constituent then there is even more meaning to the meeting. So, I sent an invitation to my own MP and was delighted that she came to meet me. Being in Westminster can be daunting, but if we remember that MPs are just people we voted to represent our views then it makes the event easier. All the MPs I met listened to our stories and I felt that my time spent had been worthwhile. It felt empowering to be at Westminster and to

know that I was doing my bit to ensure that MPs heard the voice of carers. I would definitely recommend others to do this – you will feel empowered and inspired.”

Cris Hoskin with Yvonne Fovargue MP

Sharing your story can help us tackle the financial impact of MND

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s reported in the summer edition of Thumb Print, during MND Awareness Month in June, we launched our new MND Costs campaign, focused on tackling the financial impact of MND. We are campaigning for improved financial support and services for people with MND, their carers and families. Our report, MND Costs, found that on average, MND costs someone and their family nearly £12,000, before loss of earnings, and this ranged from people who spent much much more than that, to those who were struggling to cover the basics. Financial support from the benefits system, the NHS and social services to help people with MND is often being provided

too late, in some cases after the person has died. And many bereaved carers and families struggle to cope financially after their loved one has died, because there’s little money left. The next step in our campaign is to make decision makers and politicians understand what the issues are and what needs to change. Many politicians don’t have personal experience of MND and so don’t always fully understand the issues and how they affect individuals and their families. We believe the most effective way to get politicians to understand and encourage them to take action on our campaigns, is by sharing real stories with them. Listening to a person affected by MND, or reading an individual’s story in a letter

or email, can make a difference. It’s a powerful way to bring the issue to life and can inspire and persuade politicians to take forward our campaign calls. MND Costs launched with an action for our supporters to share real stories of the financial impact of MND with their MP. Many of our volunteers and people living with the disease also shared their own stories with MPs in their local constituency, and during our Westminster parliamentary reception in October 2017. More and more people are joining our campaign and sharing their experiences. Please help us campaign to end the financial hardship of MND by joining our MND Costs campaign www.mndassociation.org/mndcosts www.mndassociation.org

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iagnosed in February 2014 with MND, and encouraged by his children, David Shaw rediscovered his love of art, not just as a form of therapy, but also as a medium of communication, picking up in his 70s where he had left off more than 50 years earlier. David’s outpouring of creativity enabled him to connect with his grandchildren and pass on messages that were important to him, especially concerning the environment. His son Robert, talks about how rediscovering a passion helped his dad live with MND and how it helped him to continue to strengthen his relationship with his grandchildren.

“Dad distracted himself beautifully from MND.” “Growing up in the family home there were three abstract drawings on the wall by Dad. Up until his early 20s he was a very talented artist and was due to exhibit his work when, one day, his portfolio just vanished. Absolutely devastated at the loss, he didn’t draw again for 50 years. It was only after his diagnosis of MND that he reignited his passion and talent as an artist. “After his diagnosis, my sister Rachel, bought him a drawing pad and some pens and said: ‘Right Dad, draw’. His particular form of MND affected him from his feet upwards, but he retained a degree of dexterity in his hands. He started with the most beautiful abstract drawings. Stylistically it was as if he picked up the pen the very next day after he stopped drawing in 1962. “His abstract style became more figurative and representative. He would draw the exterior of a castle or a country view. He always had a great love of nature and the countryside and started to focus his work on animals. He would share these drawings with his grandchildren and would tell them stories about the animals he had drawn. “With each drawing came a story, and as Dad became more confined to his chair, his imagination flourished. He would spend hours corresponding with his grandchildren, discussing each plot twist, and delighting in every bit of positive feedback. “The progression of MND meant he had

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David pictured with his grandchildren

gone from being a very active Grandpa to one hardly able to walk upstairs. However the gradual nature of progression meant the children got used to his reduced mobility. Throughout his illness he remained the most positive person. Despite being restricted in mobility, he was never anything than complete fun to be around.

“With each drawing came a story, and as Dad became more confined to his chair, his imagination flourished.” “The grandchildren developed a different relationship with him that was based on sitting, talking and sharing stories rather than enjoying days out like they would have done previously. The stories, and the art that inspired them, allowed him to connect meaningfully with his eight grandchildren, aged between 7 and 13, on topics that inspired him. They maintained a very healthy and loving relationship right to the very end. By the time he died, he had created 120 drawings and written 50 stories. “Soon after his diagnosis we had the idea to publish his work and put on an exhibition. Up until two days before he died we would sit together and edit the stories, ready for publication. Even though he didn’t live to see them

published, I take great pleasure in that he knew it was happening. “I was told about an exhibition that was being organised to present the work of two artists with MND, Sarah Ezekiel and Miles Pelling. As soon as I saw their work I knew Dad’s would complement them nicely and that the three together would make a visually appealing and entertaining exhibition to help raise money for the MND Association. “During the last conversation I had with my Dad, I told him he had distracted himself beautifully from MND. By absorbing himself in something creative, he used the time he had left in a completely positive way. That is what I learnt the most from his experience.” David Shaw’s book, Animals and Us is available to purchase on Amazon.

Stronger Together exhibition On 12-17 September, a week-long exhibition (page 4) was held to show the works of three talented artists with MND. On display were paintings by eye-gaze artist Sarah Ezekiel, the late David Shaw and photography by Miles Pilling, otherwise known as ‘Scooter Shooter’ at The Tabernacle, in London. The exhibition raised £10,000 for the MND Association.

Access to 3,000 people affected by MND through just one forum

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hen the MND Association’s online forum launched in 2011, it provided a safe, anonymous and open place for people living with MND and their carers to come together to discuss the topics and issues only those who are close to the disease can understand. The forum currently has just over 3,000 members, with discussions ranging from benefits to medication, wheelchairs to family keepsakes. There is a genuine support network across the forum. It’s not only problems that are shared but jokes, recommendations for restaurants, and upcoming events where all can attend. Don’t just take our word for it. Here’s a small selection of comments posted about the forum: “It’s comforting to know that no matter what you are feeling, no matter how silly a problem is, someone on here will get it. Someone will understand.” “It helped us massively when Dad was developing new symptoms, whether it be someone with MND themselves or a carer. It put my dad’s mind at ease with some of

T his worries, and we got pointed in the right direction when not knowing what to do. It also helped me when I was struggling and someone always replied day or night, for which I am very grateful for.” Registration is simple, you will need to provide details (but remain anonymous on the forum itself), create a profile and username. You will be verified by email, and on verification you will be able to access and post on the forum. To register, please visit http://forum. mndassociation.org/forum.php If you have any questions regarding the forum please email forum@mndassociation.org

You could win £4,000 and support people living with MND

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Y taking part in our Christmas raffle you can help improve the lives of people living with MND and could scoop £4,000 in the process! Every £1 ticket bought supports our vital work, and enables us to fund world class research to find effective treatments and ultimately a cure for MND. There are more than 70 prizes up for grabs in our festive fundraiser, including the fantastic £4,000 cash first prize. Taking part couldn’t be easier, simply complete the reply slip enclosed with this edition of Thumb Print, and return it along with your ticket stubs and payment in the Freepost envelope provided. The raffle closing date is 8 January 2018, but reply before 10 November 2017 for a chance to win one of 50 penguin soft toys. Last year’s Christmas raffle raised over £95,000 to support people living with MND and those closest to them. Please help make our 2017 Christmas raffle the most successful ever by buying or

Readership survey shows life-long connection to the MND Association

selling as many raffle tickets as possible. Additional tickets are available by calling our ticket hotline on 0345 6016936 or via email at raffle@mndassociation.org You can also enter online by visiting www.raffleentry.org.uk/mnda Regulations mean that entry is open to all UK residents excluding those in Northern Ireland, Jersey, Guernsey and the Isle of Man.

Ready, steady, ho, ho, ho You can order MND Association Christmas cards, wrapping paper and festive stocking fillers to make your Christmas extra special. Every penny of profit, together with any additional donations, will go towards our vital work for people with MND. To view our Christmas items online visit shop.mndassociation.org

hank you to the 425 people who completed our Thumb Print readership “I wanted to try my survey. The results best for all those will inform the future people who have development of the MND” magazine. We know that once you have seen the devastating impact of MND, you never forget it. This is backed up by our survey showing 44% of respondents are actually bereaved or past carers (many from over 20 years ago) who still remain in touch with the Association. We think this is one of the reasons that make the MND Association community so special. The vast majority (94%) said that research studies and developments are top priority reading. We will ensure we include more research news in every edition of the magazine. 78% of you wanted to read about personal stories, while 75% would like to read about our campaigns to improve the standard of care. 67% of those who responded want to read about how the Association is managed and we will include more on that in future editions. When asked about any topics you would like to see, there were lots of ideas. While many of you enjoyed the positive nature of the personal stories, some of you felt you would like to read ‘more realistic accounts’ of how people struggle with MND. A large percentage have asked for a ‘readers tips’ section where readers send in what items they have found useful in everyday life. We would like to introduce this in the next edition of Thumb Print, so if you do have any tips or pieces of equipment that has helped you please email editor@ mndassociation.org A number of you have suggested the need for more articles on how MND affects carers. We have therefore included more personal experiences on the impact of carers in this issue. We will also ensure every edition includes information on the Association’s work and how it spends the money you raise.

www.mndassociation.org

The magazine of the Motor Neurone Disease Association

Spring 2017

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“I have learnt so much from Harry.” T

resea Myers has been visiting Harry Price, living with MND, since January and in that time has built up a strong friendship. Tresea and Harry share their thoughts on their relationship and how much they have both gained from it. Tresea said: “I often saw the recruitment advert for MND Association Visitors in the library where I was studying for an access course towards a nursing degree.

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One day I thought I would investigate it further. Up until that point I had never heard of MND. “After applying, I was invited to an interview that left me feeling very positive about the role. I underwent a two day training course alongside people from all over the country. The course was interesting, sometimes happy, sometimes sad, but always thought-provoking. I just

couldn’t believe how this disease could be so disruptive to a person. “Not long after my training, I was given the name of the first person I was to visit. I had a few sleepless nights beforehand but as soon as I met Harry I immediately felt at ease. He is such a lovely guy and so easy to chat to. “I have never walked into a complete stranger’s home before. Harry lives in a

care home with lots of men, so that was a bit daunting. But, once I got used to it, I saw that Harry actually has a little family, with people always knocking on his door to see if he needs anything. “Harry and I are two completely different people from very different walks of life. However, we have the same sense of humour and share many interests. We will talk about what he has been up to that week, or if he needs help with anything. Sometimes we will chat about TV, politics and sometimes we just sit and not say much at all. We talk about his health and what appointments he has coming up. He does read quite a bit about MND, so he is pretty clued up on what to expect. “When I initially volunteered, it was about how I could help someone else. I never for a moment thought it would benefit me. But, by visiting Harry, I have learnt so much. He is such a strong person and his positivity is inspiring. I have learnt life is short and if you want to do something, do it now. Since visiting Harry I often find myself telling my 12-year-old daughter to be grateful for having legs to walk when she complains about having to go to the shop.

“When I initially volunteered, it was about how I could help someone else. I never for a moment thought it would benefit me.” “Harry has shown me how much we take for granted, and it is often the little things. Like when I offer to fill up his water bottle, he tells me he can’t lift it if it is full. As many of us do, I will moan about work, only to visit Harry who says how much he would love to go back to work. “I am just about to start a nursing degree and I’m considering focusing on MND as part of my elective. We need more advocates in the MND world and I want to be one of them. “If I hadn’t volunteered I would never have met Harry. By taking the leap I have gained a friend. I thought being an AV would be all doom and gloom, but it really isn’t. I think you gain as much, if not more, than the person you are visiting. Harry has inspired me to do what I need to do in life and stop procrastinating.” Harry said: “It took a long time to receive my diagnosis of MND, and it involved multiple trips to doctors and a hospital stay. Eventually, after many tests, I was told I had MND. It didn’t come as a complete shock but, the diagnosis was still

Where does the locally raised money go?

L devastating. It was like someone cutting your head off. “At the time of my diagnosis I was working for the local council and had been off sick for six months. When I met the head of HR I was told I was too sick to return to work. At 59, my working days were over. Now two years later, I live in a care home. I had a couple of nasty falls requiring stiches. When I went for a respiratory assessment I had another fall and was told that I needed a care package in place. I initially had carers three times a day but my mobility was getting worse and eventually I was told I needed to move to a care home. I really thought this was the beginning of the end. Luckily I have moved into a nice care home and it has helped me. “I get a lot of support from my specialist nurse, MND co-ordinator and hospice. As my AV, Tresea is a big part of this support network. She has been wonderful and is a lovely young lady. She often says she has learnt a lot from me. I look forward to her visiting and if I have a problem I know she will always do her best to help. “I do feel positive and I think I benefit from my happy-go-lucky nature. I have got this disease and I have to live with it and make my life as good as possible. The people who are around me help me with that, and Tresea is most definitely one of them.” Our AVs make a huge difference, but we need more. Join our vital team today and give more people with MND the chance to access this vital support. Email volunteering@mndassociation.org or telephone 0345 6044150.

ocal branches and groups raised a staggering £2.4 million last year. Most of that was spent locally helping people living with MND, their families and carers get the support they need. But did you know they transferred £654,000 to the Association’s central funds? This transferred money has helped us to support people affected by MND in your community. Over the last few years, as a result of a volunteer-led initiative called Project Butterfly, we are keeping you informed about how these funds make such a huge difference. Here are just some examples of how the £654,000 from branches and groups, along with other income helped us to help people affected by MND in local communities, during the last financial year…

Care centres

£630,000

was spent on our care centres and network, providing easy access to the timely and co-ordinated care we know is so important.

Equipment provision and loan

£622,000

was spent providing and loaning equipment to people with MND including wheelchairs and communication aids.

Support grants

£613,000

was spent on grants for people affected by MND. These examples alone amount to almost £1.9 million in direct support for local people living with MND, their families and carers.

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Bride programmes wedding vows on her tablet

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AST April Angela Brown, 48 developed a slurring in her speech. Before long she was diagnosed with the progressive bulbar palsy form of MND. However, Angela was determined to walk down the aisle on her wedding day this year, on the arm of her dad David Robinson, despite the progression of her MND. On the special day in August, Angela abandoned her wheelchair and walked towards her groom, Tim Gates. With MND having affected her speech so she could no longer speak above a whisper, she preprogrammed her wedding vows onto her tablet. However there were two words she was determined to say herself, ‘I do’. Angela said: “My diagnosis came as a devastating blow to Tim and the rest of the family, especially my daughters. They are coping with it very well, but it is hard. We did consider bringing the wedding forward, but our MND nurse told us to keep our original date because it gave us all something to look forward to.” The story of Angela saying her vows through the text-to-speech app on her tablet captured the attention of the local media. Speaking about the media interest, Victoria her daughter said: “I was worried that talking about her story, and seeing it being shared, would upset Mum. When you see your story in the paper and splashed across social media, you can’t ignore it.

“It’s been amazing to raise so much awareness of MND. If it helps others in a similar situation to myself then it’s worth doing and I don’t feel so alone.” “It’s been the complete opposite. From day one, Mum has been excited about her role in raising awareness. Rather than making her feel vulnerable or defined by a disease, she has been empowered. Although her speech has almost gone, her voice is louder than ever before. We are so lucky to live at a time when this technology is available, so my mum isn’t as trapped or lonely as she otherwise might be.” Reflecting on her wedding day, Angela said: “Given what we’ve all been through

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as a family over the last few months, it was such a poignant occasion, as well as a happy one. I will keep battling to do the little things which now seem like big things and prove that no matter what MND throws at me, I am not about to call it a day just yet. “It’s been amazing to raise so much awareness of MND. If it helps others in a similar situation to myself then it’s worth doing and I don’t feel so alone. The wedding day itself was both emotional and amazing. Being able to programme my vows was a weight lifted off my shoulders. Emotional lability meant I cried and sobbed a lot, but they were happy tears. Everyone applauded me for walking into the room with my Dad and I’m so pleased I managed to say ‘I do’ myself. That was perhaps the most special moment for me, it was so emotional and very important for me to say those words.”

Tim said it was a happy day, but also very emotional, particularly for Angela’s daughters, Victoria 22 and Hannah 21, who made sure the bride arrived in style by hiring a Rolls Royce. “It feels really good to be married, but the day was bitter-sweet,” said Tim. Now Angela has asked her daughters if they would bank their voices so that she can regain her Yorkshire accent. Angela said: “My Dad always said we all sound alike over the telephone so we thought it would help sound more like me than the synthetic voice I currently have. It is also an honour that they have both agreed to do this for me. It’s so important to have a voice you can recognise as your own. “Tim is still getting used to calling me his wife rather than partner and I am getting used to calling him my husband. We are just carrying on as normal, except now, we are Mr and Mrs Gates. And we love each other no matter what MND throws at us.” Angela and Victoria are writing blogs about living with MND – www.angie1926.wordpress.com and www.daughterofmnd.wordpress.com

Supporting us through your workplace

H Friends in the City raise £30,000 have seen how the lives of young families can be devastated by this disease, so raising awareness among the financial community is all important to me, because that, in turn, will help attract the research funds we need to find a cure.” The Network has now raised over £100,000 including two events supported by the Broad Appeal in 2017 and efforts/donations from other individual supporters. If you work in or around the City and would like to find out more visit www.linkedin.com/groups/8424261

Our vision could be your legacy If we are to achieve our vision of a world free from MND, while also providing the best possible care and support for people affected by this cruel disease, then we must continue to raise the substantial income to meet the costs involved. We rely on voluntary donations of which legacies are a vital source, accounting for almost a third of our total income over the last decade. Without legacies, we could not maintain the same high level of investment in research or the breadth and quality of our care and support services. So we are asking for your help, to ensure we can continue our fight against MND, by leaving a legacy to the MND Association in your will.

More information can be found at: www.mndassociation.org/legacies. Alternatively, call fundraising on 01604 611860 or email legacies@mndassociation.org

Please remember people with MND in your will. www.mndassociation.org

Registered Charity No. 294354

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his summer, the first David Setters Trophy was held in the grounds of the Honourable Artillery Company in London. The cricket tournament raised £30,000 for the MND Association through City Against MND, a group founded by David to promote the work of the MND Association and raise funds among the City community in which he is well known and highly regarded. David said: “I have been very moved by the support I have had from my friends in the futures industry since my diagnosis. I

ave you ever thought about how you could support the MND Association at work? Companies are often very keen to support the causes that matter the most to their employees. Many companies select a charity partner for the year ahead, who they exclusively support and raise funds for. Your nomination for the MND Association to your employer could help secure a vital partnership in the fight against MND. Your employer could also donate to your fundraising, or support you through a ‘matched giving’ scheme – where they agree to match the funds you’ve raised, pound for pound. Fundraising with your colleagues is also a fantastic way to get to know each other and have fun. So, if you’re thinking of doing some fundraising, why not get your work involved too? It’s a great way to raise awareness of MND as well as vital funds. If you’d like to find out more, email us at corporate@mndassociation.org

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“ It is important to focus on what you can do, not what you have lost.�

Fell runner, Steve Cliff started running in 1976 as a way to stop smoking. Soon he was running huge distances of up to 40 miles a time.

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adly Steve is no longer able to run following his diagnosis in 2015 of progressive bulbar palsy, the form of MND that tends to affect the muscles of the throat, face and tongue. Now, Steve has turned his attention to a new challenge. For Steve, surviving a devastating diagnosis had to be about focusing his energy towards something positive. The married father of two, who is also a grandfather to nine and great grandfather of one, decided along with his wife Wynn, to help others affected by MND by focusing on raising money and awareness. Just a few months after diagnosis, Steve decided to run the Joss Naylor Challenge, a 48-mile route across the Lake District with over 17,000 feet of climbing over 30 mountains. Men between the ages of 55 and 60 are given 15 hours to complete the challenge. At 58, Steve finished in 13.5 hours, raising £17,000 for the MND Association. When preparing for the Joss Naylor Challenge he wrote to those supporting him: “The purpose of this run is to make money for the MND Association, so to that end… I want NO sympathy, NO being nice. If I look like I am becoming ‘tired and emotional’ then give me a kick and tell me to pull myself together.” After the challenge Steve said: “MND was always somewhere lurking in my mind, but amongst the beautiful mountains, even that ogre can get lost now and then. The support of the crowd at the finish line was amazing, especially the sight of Wynn and the family.”

Steve and his great granddaughter Miya

Steve talks about how he came to terms with his diagnosis and how his MND Association Fightback Fund is helping him stay positive. “The impact of a diagnosis of MND on oneself, friends, and family cannot be explained. It forces decisions to be squared up that one only ever expects to have to face in the darkest of moments. It draws closure to

name. That is how we came up with the name of the fund, Running on Life, to reflect how I felt, and to help focus people on the positive. It also helps people feel part of a bigger thing, a bigger community of people affected by MND. “Before, when I thought about “life’s bucket lists,” it was images of races, heading to sandy beaches, and hiking up mountains. All of these thoughts continue, however, friends and family, who have always been at the centre of my life, now feature large in the bucket list. The love of friends and family is a great solace and healer of wounds. My bucket list is greatly simplified.

“The impact of a diagnosis of MND on oneself, friends, and family cannot be explained. It forces decisions to be squared up that one only ever expects to have to face in the darkest of moments.”

Steve and his wife Wynn

everything. However, my strong family support, fantastic friends, and focused approach to life meant that I very soon wanted to make a difference and to use time wisely. Having been diagnosed with MND in April, I felt determined to make a difference by helping raise funds for MND research and to help the poor souls that have little or no support from friends and family during difficult times. “I could not survive one day of living with my head hung low due to this disease. I am fortunate in having a strong family and close friends around me to cushion the blow of the diagnosis. It is not just me living with this diagnosis, but my family too and it has affected all of us. The bombshell of MND knocked us all sideways and we were soon on a very fast learning curve that no one should have to face. The only upside I can think of is that you see how much people care. It was wonderful when my employer Credit Suisse, chose the MND Association as its UK Charity of the Year for 2017 and heartening to see so many colleagues embark on fundraising activities for the Association. “Setting up the Fightback Fund provides a motivation and focus, not just for me, but all my family and friends, who wish to raise money on my behalf. It was important to give the fund an optimistic

“It’s sad to think about things I’m not able to do anymore, now and in the future. But I think it is important to focus on what you can do, rather than what you have lost. I have also learnt that it is important to access support. After a lot of initial worries, I am planning to go to the local hospice. I’ve visited recently, and they are a positive bunch – exactly what I need. “The MND Association provides great support in many ways. That is why I want to dedicate my time to supporting it. I would recommend people to fundraise for the MND Association. As well as helping future generations, it is also very cathartic. I can envision a world without MND. This is my biggest motivation. Also fundraising tends to gain a momentum of its own, particularly under a Fightback Fund banner. “I also want to raise awareness of MND. I can see a day in the future when there will be adequate funds to look after patients, friends, and family of those with this terrible disease; and probably not in my time, but a day when MND will be curable.” Steve’s Fightback Fund currently stands at an incredible £367,000, thanks to Steve’s efforts and those of his family and friends. To find out more about Fightback Funds, please visit www.mndassociation.org/getinvolved/fundraising or call 01604 611864 for further details.

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E collaborate with a number of organisations across the country to help support people with MND locally. One of the ways we do this is by funding specialist roles in hospices, such as occupational therapists. The role of an occupational therapist can have a big impact on helping people to manage their condition. Dr Lisa Cairns, Occupational Therapist at St Oswald’s Hospice in Newcastle talks about the difference they can make to people with MND. Lisa said: “I spend a lot of time creating bespoke gadgets for patients, helping them to have a better quality of life, and live independently for as long as possible.

Helping people with everyday activities “Specialist devices can really help people with everyday activities, such as gripping, walking and swallowing. I don’t believe in a ‘one size fits all’ approach as the condition progresses differently from person to person. So everything I create is custom-made to each individual patient. “The devices all have different purposes and sometimes work by capturing the tiniest of movements. This might include helping someone to hold a pen or cutlery, assisting with neck support or a gadget that helps someone to use the environmental control system in their home. “Neck support collars are amongst the more common requests. Neck weakness is often a symptom of MND and there are standard collars you can buy, but some people might not be able to tolerate these, or it might be that their neck is weaker on one side. So I adapt a standard collar for them. This involves taking a person’s neck measurements, making a template and adapting the collar using low temperature thermoplastic. The only thing about the collars is that I wish I could work with a fashion designer to make them look more attractive! “My favourite thing about the role is being challenged with something I haven’t come across before and coming up with a solution. Without the support of my colleagues this wouldn’t be possible particularly those at the Newcastle MND Care and Research Centre, the MND Association and at St Oswald’s.”

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Dr Lisa Cairns and Geoff Hutchinson

Geoff Hutchinson, from Northumberland, is living with MND and has benefitted from Lisa’s care and support. Geoff said: “At my first meeting with Lisa, she complimented me on a tool I had made to help me use my keys. It was clear from that moment we would get along fine. An hour later, I left with a device to help my fingers grip a spoon. As they grew weaker and my wrists, elbows and shoulders also went, she would invent a new modification. Over a year, I benefitted from about five or six of these.

“My favourite thing about the role is being challenged with something I haven’t come across before.” “It wasn’t just eating where I needed help. As my arms grew weaker, getting dressed was a major problem, especially pulling trousers up. After a short home visit, she came up with an idea using Velcro and a riser recliner chair. “These ideas were invaluable as I tried to preserve my independence. Never did she suggest getting family to help me or point out that each of these wonderful inventions would be rapidly overtaken by my deterioration. “As well as all this, she has made door openers, finger straighteners and a personalised hypnosis CD to help me relax. She organised a pub outing with me and a couple of fellow patients, a quarry visit to

help with my interest in geology and most recently arranged for me to take a flight in a glider plane. I used to be a private pilot, but due to my condition it isn’t possible for me to fly anymore. “I am now disabled from the neck down and my speech is compromised. My main contact with friends and family is now by email which I would be unable to use if it hadn’t been for Lisa obtaining an eye gaze system. The adaptions designed by Lisa have helped me to retain my independence and nothing has been too much trouble for her.”

Our information sheet 11C – Equipment and wheelchairs has more detailed information about equipment and adaptations for people living with MND. We also have a new publication available for health and social care professionals which has been endorsed by the Royal College of Occupational Therapists – Occupational therapy for MND. You can find our information online at www.mndassociation.org/ publications To order publications, contact MND Connect helpline 0808 802 6262 or email mndconnect@mndasociation.org

branchesandgroups Walking and dancing to d’feet MND

Golfers swing into action

The captain of Mere Golf Club raised more than £20,000 for the Cheshire Branch during his year in office. The impressive total was raised through a variety of events organised by Chris Clempner. It will be used to fund respite care for local people living with MND, in memory of his wife Rosalind’s first husband Terry Brown, who died from MND in 2010 aged 61.

Now in its 13th year, the Kings Lynn Branch Walk to d’feet began on a high note, with Hayley Rudd and Michelle Hanslip presenting a cheque to the Kings Lynn Branch for £4,700. This outstanding amount was raised from an extremely successful Charity Ball held earlier in the year at Knights Hill Hotel. Hayley and Michelle were motivated to raise funds in memory of their aunt and sister, Mandy Gamble, who they lost to MND and who would have been celebrating her 50th birthday this year.

Newcastle Millennium Bridge lit up in MND colours

All steam ahead

The South Herts Group was presented with a cheque for £1,300 by a group of steam enthusiasts at the St Albans Steam Rally in June following the death of their friend Roy Miller to MND. The money was raised from a fundraising steam rally held during May in Harpenden.

The Tyne and Wear Branch held their annual Walk to d’feet for the 7th time raising a grand total of £36,000 to-date. In June, the branch also arranged for the Gateshead/Newcastle Millennium Bridge to be lit up in the MND colours during MND awareness month.

Walking together

Daredevil Dawn is at it again at 86

Following Dawn Goodson’s wing walk at the Bournemouth Air Show last year where she raised an amazing £8,500, when asked by a BBC South Today reporter ‘what next?’ she declared she was planning to abseil down the Portsmouth Spinnaker Tower. She convinced six others to join her, and while some of the team were scared, they felt if Dawn could do it at 86, they couldn’t let the side down! Many of the team members have their own personal experience of MND and included Brian Kendrick, Lucy Biddulph, Blair Tookey, Sue Freeman, Tom Parrett and Clare Conroy, standing in for Gerry Taggart. The team reached their target of £6,000 for the East Dorset and New Forest Branch.

The North West Wales Group and the Clwyd Branch joined forces to organise a Walk to d’feet MND in Llandudno. Over 150 walkers made their way along the famous seafront, creating a sea of blue, and raised an impressive £6,300. To continue in their collaboration, they’ll also be producing a joint newsletter to inform people across North Wales about the support they provide. The Cleveland Group, Hambleton and Richmondshire Group and the Durham and Darlington Group also held a joint Walk to d’feet MND for the first time at Hardwick Hall, Sedgefield with over 100 people attending.

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thankyou Share your pictures at www.facebook.com/mndassociation Every day 10k: Sally Pinnegar’s sister-in-law Chris died from MND earlier this year. As a runner, Sally pledged to run 10k every day in May. Mum of two Chris, had a huge collection of special scarves, so Sally decided she would take a scarf and tie it on a particular tree at the end of each run to commemorate Chris’ spirit. As the days went by, the tree looked more and more beautiful, providing a lovely tribute to Chris’ memory. Photos posted on social media really captured people’s hearts and online donations raised £3,300.

Village life: The tiny Mid Wales communities of Beguildy and Felindre are behind local man Colin Morgan, who is living with MND. Since his diagnosis the two villages have rallied together to show solidarity and support for the Morgan family. The local rugby club, YFC, pubs and village hall committees have all got involved with fundraising and so far raised in excess of £6,500.

Absailed down the Humber Bridge in a wheelchair: Jason Liversidge who is living with MND, absailed down the Humber Bridge to raise awareness and funds for the MND Association and The Fire Fighters Charity. The Humber Bridge is a whopping 2,220 metres long (making it the eigth longest single span suspension bridge in the world) and approximately 185.5 metres above the water at high tide. Jason said abseiling off the bridge was a challenge for anyone, but especially for him, so he was helped by members of the local fire service. He said: “I can no longer walk, wash, dress or feed myself and need round the clock care, but I’m not going to let a little thing like that stop me! So I have enlisted the help of the fire service.” Jason has raised an amazing £8,700 to be split between both charities.

A family affair: Debbie Howard’s mum died from MND so she wanted to do something special to honour her. Setting off from Wimbledon, where her mum was born, she shared a tandem bike with her husband Andy and, accompanied by brother Vern, cycled all the way to York. There were tears and laughter, but all three thoroughly enjoyed their adventure and raised £2,200 for the Association.

A fishy fundraiser: Graham Walker organised a fishing match in York to raise funds in memory of his wife Anne. The day was a great success, raising £5,600 and was open to beginners as well as keen anglers. Anne’s sister Judith managed to catch 30 fish, even though it was the first time she had ever held a rod.

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Pedal power: Cath Muir, who is living with MND completed a Coast 2 Coast bike ride on a tandem with her sister Ruth, raising a brilliant £5,000. There was a huge welcome for the sisters as they arrived at their home town of Whitby.

Northampton turns blue and orange: This year we had 21 runners taking part in the Northampton Half Marathon. It was particularly special as Jo Cole and Dave Solomon who are both living with MND, took part. Both used to be keen runners but now join in runs in their wheelchairs. It was a fantastic event with lots of support from Run MND members, some travelling up from Portsmouth to be there on the day. Association staff who took part rallied colleagues, family and friends to join members from the Northampton Branch and other team families to cheer them along the way.

Feel the fear: Lauren Petchell faced her greatest fear by taking part in a sky dive in support of her dad, Mick Grimsdale. Despite being terrified of heights Lauren wanted to do something special on her dad’s birthday and raised a fantastic £4,000 for the Association. Lauren said: “I wanted to raise as much money and awareness for this amazing charity as possible. Dad has already benefited from the support of the South Herts Branch, which will only increase as the disease progresses. I admire the fact that, with everything Dad is going through, he still has a smile on his face and enjoys every day for what it is, which is such an inspiration to all of us. It can be hard for family members to watch your loved ones go through something like this, as you often feel helpless, so I wanted to do what I could to help.”

Keep on moving: Justin HostettlerDavies and around 80 supporters completed the epic 100k non-stop Stadium2Stadium walk for MND, walking from Parc y Scarlets Llanelli and finishing 24 hours later at Rodney Parade in Newport. Justin and his team walked non-stop raising over £12,000 for people affected by MND in South Wales. Special delivery to Westminster: Anne Wilson’s Walk to d’feet MND covered 135 miles from Wiltshire to Westminster to deliver a letter to the Prime Minister to raise awareness of the need for more fully accessible toilets. Anne had different walking partners each day, including her husband Dave who is living with MND. Dave joined her for the last part of the walk over Westminster Bridge and onto Downing Street. Anne has raised an amazing £5,000 for the MND Association and Dorothy House.

A muddy adventure: Friends Harvey and Jake, along with their mums, Sally and Julie, took on the Weston Park mud run, involving 3km of muddy trenches, obstacles, tunnels and monkey bars, raising over £700. Harvey was inspired to fundraise as his nan and Sally’s mum, Valerie Bower is living with MND, and the Association has supported the family over the last few years.

An uphill struggle: Ros Beveridge and the team at Boulder Central organised a 24 hour climb to raise funds and awareness in honour of Gavin Lloyd, who is living with MND. Gavin and his family stayed at the centre for the whole 24 hours to show support. The team has raised over £2,500.

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yourletters If you have something you would like to share with other members of our MND family, we would love to hear from you. Letters, which must include your full address, can be sent to Your letters, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email to editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.

It’s getting harder but…

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aphael Doyle, is a singer, writer and ‘Jack of all trades’, including a London bus driver, a teacher and more recently a postman. Last year Raphael was diagnosed with MND. In an email to Thumb Print, Raphael describes the events of last year. “With my old friend, musical partner and BBC 6 Music presenter Tom Robinson, and my son Louis, we made the album I had always wanted to make, Never Closer, which came out on Cutting Vinyl in February. We toured, playing concerts from Newcastle to Dublin and finishing off where it all began at the Troubadour in London. It’s been a time of richness and of things coming full circle, which I call my grace period. “Now it’s getting hard, but I am with my family and there’s great support from our local MND Association branch. I won’t walk the Pennine Way again, or trek up through Spain on the Camino, like my brother and I did. But I have a poetry reading in Belfast in September and I’m going to take Louis to where I grew up on the Antrim Coast, and walk along the promenade with him and out on the path that leads to Blackhead Lighthouse.” You can read Raphael’s blog here: raphaeldoyle.wordpress.com and hear his music at www.pledgemusic.com/projects/raphael-doyle-never-closer Raphael has written this poem, reflecting on his diagnosis of MND.

Dear Thumb Print I just wanted to say thank you to the MND Association so much for the contribution towards my scooter. I am so pleased and I’m already using it as much as possible. It has made a huge difference to my life. I am so appreciative, please accept my heartfelt thanks. With kindest regards Nicola Drewry

To face the fact I have to face the fact That it’s getting hard now. I can no longer walk out And follow the beguiling breeze That brushes my face and dances ahead.

No more train journeys alone To undetermined destinations. Youth hostels, B&Bs. Distance appreciatively maintained with other travellers.

The morning comes, sweaty, marooned, And the short walk to the bathroom Establishes the days dilemmas. Nothing will halt the progress Of this diminishment.

I will no more find myself In some deliciously lonely place, A long way from home Or helping hand.

Breakfast, then the daisychain footsteps up new paths, Along barely discernible sheep tracks To where only the wind speaks And the surrounding hills resonate Their silent, empty intelligence.

Outside, the wild cry of the distant hawk And it’s cruel, exultant swoop Reach me across miles Across miles Across miles that will always be mine.

I cannot squat In vast isolation As the heather rustles around me.

diarydates

North and East joint Regional Conference: York, 11 November 2017 • International Symposium on MND: Boston, 8 – 10 December • The Big Half: London, 4 March 2018 • Regional Conference: Wyboston Lakes, Bedford, 24 March 2018 • Brighton Marathon: 15 April 2018 • Annual Conference and AGM: 14 July 2018 • Great North Run: 9 September 2018 • Walk to d’feet MND: All year round

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aboutus

Living with MND, a personal account This is a brutally honest piece about one person’s own experience with MND. You may find the content upsetting. Please remember if you feel you need support, or simply just someone to talk to, our MND Connect helpline offers advice and practical and emotional support. You can contact them on 0808 802 6262 or email mndconnect@mndassociation.org

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text comes through on my phone and wakes me from a deep sleep, a world where I would much rather stay. It’s 9.05am and I can hear my husband sighing in the next room. He will have been awake since about 6.00am. He doesn’t sleep well. I suppose it’s the worry of living with me. I wish he would go to the doctor about it, if only to talk about things, but he won’t. And now I suspect that he is psyching himself to get me up. And I don’t blame him for feeling like that. I would be the same. It’s just as much a drudge for the partner as for the patient. It destroys both your lives. At least this is not the morning he has to put a suppository up my bottom. Say goodbye to dignity! Once it is in position, I have to lay there for 30 minutes as it works. I need the suppository to give my bowel regularity, without which I would suffer constipation, a common problem for people who are entirely sedentary. Anyway, now to the part of the day I hate most. Getting up. Especially in winter. I am particularly susceptible to the cold. My husband is really good at getting me washed or showered very quickly, but sometimes I still shiver uncontrollably. Once dressed I am placed in either the lounge or conservatory, depending on what time of year it is. A day of daytime TV, iPad, Kindle or crosswords stretches ahead. I used to enjoy painting and knitting, but those pleasures have been stripped from me now. I am lucky enough to have quite a lot of visitors, but that is becoming quite distressing for me because I am losing my ability to speak. I have become messy when I eat or drink. I can understand why Ronnie Corbett shut himself away from people in the last year of his life. Oh dear, now I need a wee again. My husband sighs and moans under his breath because it’s not long since I’ve been. I don’t blame him but I can’t help it. Don’t let anyone tell you ‘you are not a burden’ because you certainly are. In the eyes of the occupational therapists, my husband and I are naughty because we are continuing to use a standing hoist to go to the toilet even though my legs can

no longer bear my weight. We have had ceiling hoists fitted which we should be using, but when we have used them I have been left feeling breathless, exhausted and in urgent need of my ventilator. It is a hard work for the operator too. From our sitting room to the toilet and back requires six separate hoist manoeuvres. We pay for someone to care for me for five hours a week which gives my husband some time for himself, but he would like more. I sometimes think I’m getting to the point where I need care all the time I’m awake, but I don’t think my husband has got the patience to do that and currently every opportunity of a couple of hours of freedom he jumps at. I can understand why he gets frustrated. I must appear to be very demanding. I am demanding. The trouble is, I can never get comfortable. Most of the time I’m up, I need my nippy ventilator on. Up until a few weeks ago I could put that on myself but I cannot manage even this any longer. If I’m 2mm off-centre in my recliner, I have to be moved and just lately the skin on my bottom seems to be being dragged away from me, leaving me in pain. I would like to just wriggle about in my seat to relieve it but I am not able to. My husband and the professionals say ‘just recline your chair and it will be alright’. Yeah right, if only! It’s the same when I’m hoisted into my power chair. My husband grimaces when I ask him if he could settle me a bit further back in the chair. But what he doesn’t understand is, because the middle part of my body is slumped, I cannot breathe properly if I’m not pushed to the back of the chair. By bedtime my discomfort has reached its height. My stomach has become bloated which makes it even more difficult for my diaphragm to work. I’m gasping for breath if I take my nippy off which makes cleaning my teeth an ordeal. Oh but the sense of relief when I’m positioned (and I mean positioned, it has to be just so because I cannot move once I am lain down) in my bed with my nippy on and I can escape again into oblivion away from my world of MND. Anonymous, sent via email.

The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. As a charity we rely on voluntary donations. Our vision is a world free from MND.

Website www.mndassociation.org

Social media Online forum A place for people affected by MND to share experiences and support each other. http://forum.mndassociation.org Facebook www.facebook.com/ mndassociation Twitter @mndassoc

MND Connect Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 802 6262 mndconnect@mndassociation.org

Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org

getinvolved telephone: 01604 250505 website: www.mndassociation.org email: enquiries@mndassociation.org www.mndassociation.org

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The complete solution for communication, controlling your computer and operating equipment in your home.

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