Thumb Print - Autumn 2015

The magazine of the Motor Neurone Disease Association

Autumn 2015

The mighty Amazon awaits Stuart looks ahead to an epic fundraising challenge

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4

Money matters

Find out how the Budget has affected people living with MND, their families and carers

6

The challenge of a lifetime

One man’s incredible tale as he faces the might of the Amazon river

12

Your stories

Thumb Print readers tell their own stories, in their own words

17

Coming live to your living room

Log on to live-streaming to view all of our conferences as they happen

18

App happy!

How the latest apps and technology can make life easier for you

20

Colour me calm

Julia Mepham explains how colouring helped her cope with the loss of her beloved father

24

Pedalling for pounds

Our incredible cyclists go the extra mile to raise vital funds

Cover: Stuart Manley prepares to row 2,077 miles along the Amazon river for the MND Association. Picture by Matt Gore

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: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org

welcome…

I always particularly enjoy this time of year, as it is the time when the MND family joins together once more to reflect on the achievements of the past year.

Our AGM and conference in September was a tremendous success with more than 170 of you joining us on the day and 385 more – some from as far afield as Pakistan and Costa Rica - watching the day’s events via our live-streaming service.

It was a chance to renew old friendships and make new ones, celebrate the extraordinary achievements of the past year and learn from each other’s experiences.

But while the AGM is our opportunity to reflect on the past year, planning our strategy gives us the chance to turn our thoughts very firmly to the future.

Work on the document, which will shape our priorities from 2017-2021 is already underway but your involvement is vital to ensure we continue to deliver the very best we can for people living with MND, their families and everyone who cares for them.

Our current strategy, which ends next year, was developed with the help of people with MND, their families and carers, our members, volunteers and staff, health and social care professionals, research experts and people who have lost loved ones to the disease.

Our vision remains the same – we want to see a world free from MND – but how we will work towards this after 2016 is still to be agreed.

To help us with this process, we want to make sure we draw on the wealth of expertise which surrounds the Association and collect the views and ideas of as many members of our MND family as we can.

So, I would ask all of you to give some thought in the coming weeks to the priorities you think the Association should focus on in the years to come.

We will share more information about how you can get involved in the next edition of Thumb Print.

Thumb Print is available as a 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

www.mndassociation.org

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news

Money matters Unsure how the Chancellor’s Budget is likely to affect you? Our policy team has looked at the evidence to determine the announcements which are likely to affect people living with MND.

I

N the first Budget from the new Government, the Chancellor of the Exchequer announced £17 billion of cuts to public spending.

An additional £20 billion of cuts are expected to be made before the next election and the details will come in the spending review in November.

The Government claimed to be protecting mainstream disability-related benefits from cuts, although evidence suggests this is not entirely the case.

This overview outlines key changes we have identified in the detailed documents released by the Treasury.

Benefits Overall, the Chancellor has reduced the pace of benefit cuts he planned before the election, making £12 billion of cuts over three years rather than two. He also confirmed that the Government will not be taxing or means-testing disability benefits.

Substantial cuts have been announced. People placed in the Work Related Activity Group (WRAG) for Employment and Support Allowance (ESA), the income replacement benefit for people who are unable to work because of illness or disability, will have their benefit reduced to the same level as Job Seeker’s Allowance. Working age benefits will be frozen for the next five

years, and not increased in line with inflation. This will include the main part of an ESA award, although the top-up given to people in the support group will not be frozen. We are lobbying MPs to reverse this change. People with MND who receive other benefits such as tax credits may also be adversely affected.

The total amount a household can receive in benefits, which was capped under the Coalition Government, will be restricted still further to £20,000 a year (£23,000 in London). People in receipt of Personal Independence Payment (PIP) or Disability Living Allowance (DLA) are exempt from the cap, but carers who do not live with the person they care for may be affected.

Housing The housing position of some people with MND could be affected in a variety of

technical ways. Housing associations and local authorities will be expected to reduce rents for social housing by 1% for each of the next four years. This may be beneficial for people who live in social housing, but at the same time anyone who lives in social housing with a household income of £30,000 (or £40,000 in London) or above will be required to pay rent at the market rate or close to it. The Right to Buy will be extended to housing association tenants.

Health and social care The Budget contained some announcements about the funding of the NHS in England. Full details of funding settlements for devolved nations – Wales, Northern Ireland and Scotland - can be expected in the spending review.

For England, the Chancellor confirmed that the Government will provide the extra £8 billion identified by the NHS as necessary to maintain services at current levels. No new funding for social care was announced in the Budget; we are working to convince the Government to make sure it gets the investment it needs in the Autumn spending review.

More detail is available on our website, www.mndassociation.org/ summerbudget2015

Budget battle heads to Parliament

Our campaigners made sure the Association’s voice was heard on Budget day

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www.mndassociation.org

Leading up to the Budget, the Association campaigned to protect benefits for people with MND from spending cuts by launching a social media action.

Nearly 600 people joined our campaign and helped put pressure on Chancellor George Osborne MP to protect benefits for people with MND from spending cuts. We blasted out a collective timed message on Facebook and Twitter, creating a wave of noise on social media on Budget day.

Supporters also tweeted their MP asking them to put pressure on George Osborne MP. On Budget day we also joined a demonstration outside Parliament to help make sure the MND voice was heard.

“The hardest thing was not being able to say, I love you” We have been overwhelmed by your response to Silence Speaks, our new annual fundraising campaign, which was held during Awareness Month in June. As well as raising vital funds for the Association, it was an important reminder of what it’s like to live without a voice, something many people living with MND experience every day.

Thumb Print Editor, Clare Brennan spoke to Jane Groarke who took part in the event in June and says that for her, life will never be the same again.

W

HEN Jane Groarke decided to take part in Silence Speaks she had no idea just how emotional the experience would be.

The decision to take part in the sponsored silence, which is now an annual fundraising event on the Association’s calendar, was a very personal one.

In 2013, her brother Philip sadly died from MND at the age of 45.

Having watched him live with the disease for 11 months, Jane was passionate about raising money for the Association as well as raising awareness in her home town, Warrington.

She also wanted to demonstrate to others how difficult it is to live without a voice – something that affects many people living with MND. But nothing could have prepared her for the lasting effect that not being able to communicate with her loved ones, friends

She said: “I rang a bell when I wanted attention and I wrote messages on a number of flash cards.

“I noticed that people would speak to me as though I was deaf, which really hit home, as I remember people speaking like

M

My dad Mark has motor neurone disease and he’s dying.

MND is fatal, leaving people like my dad trapped in a failing body. It kills 5 people every day in the UK, half within just 14 months of diagnosis. Before dad dies MND will take away his voice. Seeing dad in a wheelchair is hard, but it’s going to get worse. Soon he won’t be able to tell me he loves me anymore.

Find out how the MND Association is helping my dad, and thousands like him have a voice.

This advertising space kindly donated by mnd association supporters. Thank you.

Texts Cost £5.00 plus network charge. MND Association receives 100% of your donation.

Obtain bill payers permission. Customer care 08448479800. Charity No 294354.

“I never truly appreciated what Philip went through, but now, I do. The hardest thing was not being able to tell my family that I loved them.”

Jane Groake, pictured with her brother, Philip

that to my brother.

“I also found that colleagues who asked me questions would get irritated and the conversation had often moved on before I had been given the chance to answer.

“When I finished the challenge and I could speak again, I didn’t want to. For the rest of that day I was really quiet as what I had experienced had a real affect on me.

“It was the hardest thing I have ever had to do.”

If you would like to find out more about Silence Speaks and the ways in which you can get involved, visit www.mndassociation.org/silencespeaks

Association pays tribute to Mark

MY DAD SHOULDN’T DIE WITHOUT A VOICE

Visit www.mndassociation.org/mark To donate £5 text MND VOICE to 70004

and colleagues would have.

She said: “I never truly appreciated what Philip went through, but now, I do. The hardest thing was not being able to tell my family that I loved them.”

Armed with flash cards and a notepad, Jane, who works for a catering company, spent nine hours of her day completely silent and raised a total of £365.

ARK SAMSON, who appeared in the Association’s Awareness Month campaign in 2014, pictured, alongside his daughter, Cheryl, has sadly died.

Mark, who also features on the cover of the Association’s current strategy document with Cheryl and his wife Gail, lost his battle with MND on 17 September aged 57.

Together, the family has supported the Association in many different ways as campaigners and fundraisers.

In 2014, Mark and Gail also took part in the Association staff conference; sharing their story and illustrating the way liaison with regional staff and volunteers helps support people living

with and affected by MND. MND Association Chief Executive, Sally Light said: “Mark has been an outstanding supporter of the Association. From the time he first attended an AGM with his wife and daughter – they have all given so much time and been so committed to raising awareness and also funds.

“Our Voice campaign was incredibly powerful and the beautiful image of Mark and Cheryl on their poster connected with so many people. Even fairly recently Mark was still very active on Twitter and his blog supporting the Association with his always positive spirit.”

Mark leaves his wife Gail and children David and Cheryl. www.mndassociation.org

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news

Stuart faces the challenge of a lifetime A

S fundraising challenges go, it has to be among the most daring it is possible to imagine.

But in November, five brave men from Shropshire will travel to Peru to embark on the biggest challenge of their lives – a 2,077 mile row along the mighty Amazon River.

The five men, who are all amateur rowers, will take part in the event in their boat, The Bishop, to raise money for a number of different charities.

June 2014, his family has pulled together to raise an incredible £86,000 for the Association by organising events including CyclingForBryan, an event which saw eight cyclists make their way from John O’Groats to raise awareness and vital cash.

The team’s 2077 mile row will take a month

Among them is Stuart Manley, who has been inspired to raise money for the MND Association because his uncle, Bryan Challenor, is living with the disease.

Since Bryan was diagnosed with MND in

By taking part in the Amazon Row, without any additional support, Stuart hopes to add to that already extraordinary total, as well as getting a mention in The Guinness Book of Records.

Picture courtesy of The Shropshire Star

“River traffic is a big obstacle.

Barges the size of a football pitch and sometimes four or five of them in a row.

He said: “This has only been attempted once before by two professors from Cambridge University.

“We have been in touch with them and had a meeting, where we talked about some of the challenges we might face.”

The challenge which lies ahead is fraught with danger and ‘lifethreatening’ obstacles which the group will face over 30 gruelling days.

Stuart explained: “River traffic is a big obstacle. Barges the size of a football pitch and sometimes four or five of them in a row. We have had to install low radiation radar so we can see them.

“Illegal loggers are another risk, as are kidnappers and piracy.”

“We will be rowing 24 hours a day in shifts, two hours on and then two hours off.”

The group will also face be at the mercy of mother nature, with temperatures expected to soar to a sweltering 38°C, with 90% humidity.

He said: “We will be rowing 24 hours a day in shifts, two hours on and then two hours off.

“We will be carrying water as ballast and using water purification tablets, as the Amazon river is pretty nasty.”

The group is aiming to start their row on November 1 in Nauta, Peru, finishing around 30 days later in Macapa, Brazil.

If you would like to support Stuart, you can donate via his JustGiving page at www.justgiving.com/stuart-manley1

Stuart Manley, back row, left, pictured with the rest of the team who will be taking part in the Amazon Row challenge with their boat, The Bishop.

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To read more about the Challenor family’s fundraising success turn to pages 24 and 25.

Stuart Manley prepares for his voyage along the Amazon

www.mndassociation.org

7

news

Going the extra mile for a friend

O

NE man’s lasting friendship with a former colleague has led to him taking part in an epic coast-tocoast adventure. Mike Pooley, from Carlisle, first met Balakrishnan Lakshminarayanan when the two men started working together as production managers at Crown Bevcan Metalbox 30 year’s ago.

Sadly, Balakrishnan, who is known as Mohan, was diagnosed with MND in March 2012, but the pair’s lasting friendship led to Mike taking on the cycling challenge to raise money for the Association in his honour.

“Mike has always stayed in touch, dropping in to see me at least once a month and volunteering to do any work around the house.”

Mike Pooley (left) is pictured with his friend and former work colleague Balakrishnan Lakshminarayanan, known as Mohan

Mike said: “Mohan worked for the same company in India and then Saudi Arabia and eventually he came to Carlisle.

“We were both production managers and our daughters were the same age, so we had a bit in common.

“Shortly after he was diagnosed with

MND he left work, but he lives nearby and I kept going round to see him. The people at work would always ask after him and he would ask what was happening there.

“My manager is a very keen cyclist, he cycles to work every day, and together with a group of colleagues we all decided to take part in a coast-to-coast challenge. Mohan has always said that the Association needs as much money as possible, so we decided to raise money for that.”

The challenge took the cyclists from Whitehaven on the west coast to Tynemouth over on the east, passing through Whinlatter, Hartside and Allenheads – a total of 140 miles. To date, they have raised £1,085.

Mohan said: “Mike has always stayed in touch, dropping in to see me at least once a month and volunteering to do any work around the house. I hope something good comes from Mike’s efforts and those of fundraisers like him.”

If you would like to donate, you can visit Mike’s JustGiving page at www.justgiving.com/Mike-Pooley2

Fundraiser Paula is the Pride of Britain

H

UGE congratulations to Paula Maguire, for winning Fundraiser of the Year at the Pride of Britain Awards last month.

Together with husband Robert, the couple have supported the Association for many years and played a huge part in the success of the Ice Bucket Challenge last year.

On September 28, Carol Vorderman hosted the 17th annual event in London which celebrates extraordinary people from all over Britain.

Paula beat tough competition to claim the prestigious award, presented to her

by Sir Ian McKellen who described the Association as, “the Cinderella of many charities.”

Paula said: “I don’t do this for awards. I do everything to help make a difference to those living with motor neurone disease. This is for all our angels who have been taken by MND and the MND warriors still fighting.”

Sally Light, Chief Executive of the MND

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www.mndassociation.org

Association said: “We are so proud of Paula and of course Robert and the whole family. The Ice Bucket Challenge took over all their lives for weeks and it is great they are being recognised in this way.

“More than £7m was raised for the MND Association thanks to the Maguires spotting the social media phenomenon of 2014 as it was taking off in the States. And the Ice Bucket Challenge did something else too – it helped raise awareness globally and people affected by MND no longer felt alone.

“While they might have been in the media for their Ice Bucket Challenge exploits, the Maguires have been fundraising and very active volunteers and supporters of the Association since 2009 when Paula’s uncle was diagnosed with MND and died just weeks later.

“Paula’s long term passion for and commitment to raising awareness and funds for the MND Association typifies so many of our amazing supporters who have been touched by the devastation of MND.”

Paula and Robert were also recognised at the National Fundraising Awards earlier this summer when they won the Best Volunteer Fundraiser Award.

Paula Maguire, pictured left, with Association Patron Charlotte Hawkins

Daredevil Ted hits new heights

I

MAGINE flying 500 feet in the air, suspended on a zip-line while reaching speeds of around 115 mph.

It is a feat that would be daunting to someone half his age, but it is something Ted Parr did earlier this summer to raise money for the MND Association – at the age of 91.

Ted Parr, (second from left), prepares for lift off

Ted served in the Royal Air Force during the Second World War and was keen to raise money for the Association in memory of his wife Mary, who sadly died from MND in 2001.

Over the years, he has held many roles

within the Gwynedd and Ynys Mons Branch of the Association, including assistant secretary, fundraiser and Association visitor.

So far, his daredevil feat has raised around £2,500.

He said: “I spend three mornings a week attached to a kidney dialysis machine and people said I was not capable of riding the highest, fastest and longest zip-wire in Europe. They should have known better!

“I was accompanied by three of the wonderful renal unit nurses, Shirley, Tracey and Alwyn who all took the rides with me.

“With a helpful push we were over the edge, above the quarry and on the way down the great loop of cable. In a couple of seconds we reached our maximum speed of around 115 mph with the quarry roads, buildings and pits hurtling beneath.

“It was the most exhilarating experience which I thoroughly recommend as a birthday present for every 90 year-old!

“Having spent four years during the Second World War as a rear gunner in bombers I had some understanding of what to expect. Even so the views, the sense of speed, the rushing wind and the screech of the trolley were a very worthwhile experience. A parachute jump for my 92nd birthday? Well, who knows?”

Our Christmas raffle is just the ticket

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OU could win cash prizes, and support people living with MND, simply by taking part in our Christmas raffle.

Thanks to the support of people like you, last year’s raffle raised a staggering £115,000 which has enabled us to keep working to ensure that people living with MND achieve the best quality of life possible.

Every £1 ticket sold in our 2015 Christmas raffle, offers the chance of winning a number of prizes - including a £4,000 cash prize.

Please return the stubs and completed reply slip in your Thumb Print mailing together with payment in the freepost envelope by Friday 6 November and you could win one of our 2016 diaries. The main raffle closing date is Friday 8 January and the draw will be held on 15 January.

Please help make our 2015 Christmas

£1

2015 Christm as Raffle 1st prize: £4,0

PER TICKET

00 cash

2nd prize: £5 00 cash 3rd pri ze: £200 cash 20 runner-up prizes: £25 cas h Plus 50 fast rep ly prizes: 2016 diary Closing date: 8

January 2016

Main draw dat e: 15 January

2016

raffle the most successful yet by buying or selling as many £1 raffle tickets as possible.

Additional tickets are available by calling our hotline on 0345 6016936, via email at raffle@mndassociation.org or by visiting the website www.raffleentry.org. uk/mnda Regulations mean entry is open to all UK residents, excluding Northern Ireland, Jersey, Guernsey and the Isle of Man. Don’t forget that the more tickets you buy, the greater your chance of scooping the top prize. Good luck!

Jeremy Vine, pictured with his ‘Strictly Come Dancing’ partner, Karen Clifton

Strictly star Jeremy joins MND family

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OURNALIST, TV presenter and Strictly Come Dancing star, Jeremy Vine has been announced as Patron of the West London and Middlesex branch.

Jeremy, who is probably best known for his show on Radio 2 and as the presenter of the BBC’s election night coverage, Newsnight, quiz show Eggheads and Points of View, agreed to be Patron of the branch after being approached by Branch Chair and Association Trustee, Janis Parks.

He said: “The MND Association does brilliant work for people who have been struck down by one of the most debilitating illnesses ever known. I am absolutely delighted to do what little I can to help them understand that we are all rooting for them, whether or not we have directly been touched by the disease.

Everyone is dreaming of a cure. While we wait for one, at least let us ensure that people with MND know they are loved and cared for.”

Janis said: “We are continually working to raise awareness of MND and having Jeremy as our Patron will help to spread the word. He lives at the centre of our branch area and has told me that he will support the Association’s efforts, both locally and nationally, as much as his very busy schedule allows. We’re very pleased to welcome Jeremy into the MND family.” www.mndassociation.org

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news

Come and join our valued team

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ORE Association visitors are needed to expand the highly valued network of volunteers and help more people living with MND. This was the message which came through loud and clear as a result of a project launched to evaluate our Association Visitor Network.

The MND Association has a network of 300 trained volunteers who are able to offer information and one-to-one support to people with MND, their families and carers through home visits, telephone and email support.

“There is a need for someone who is more patient orientated, who is knowledgeable. We are more in control and less frightened because of her.”

Person living with MND Working in partnership with the Institute for Volunteering Research, the Association got in touch with our members to find out what people thought of the service and how it might be improved. The results are extremely encouraging with widespread praise of our volunteers.

Many members gave up their time to take part in focus groups, telephone interviews and face- to-face meetings to tell us about their experiences of the network - many more of you completed our surveys.

“There is a befriending element, you can discuss things in general, be it your psychological state, whether you are happy or depressed or whatever...”

Person living with MND We would like to say thank you to everyone for sharing their views and experiences with us, your support has been phenomenal and will help to inform our strategy for the future.

The key reason for doing the research was to find out what difference Association visitors make to people living with MND, their families.

We also wanted to know how we might improve the service and the support we give to volunteers.

Your views and feedback will help us make a compelling case to potential funders, so that we can raise more money. It will also inform our strategy

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www.mndassociation.org

Evaluation of the Association Visitor Network Experiences of people affected by MND

Having an AV has helped me

Types of support provided by AVs:

90% Point of contact

Overview of services

Source of information

Effectiveness of AVs:

92%

of people living with MND

&

91%

Emotional Encouraging support sociability

of carers

Felt well supported by their AV

How supported do people living with MND feel

96% Those

with an AV

85% Those

without an AV

97%

said being an AV gives them a sense of purpose

92%

feel well supported by their local branch or group

96%

said being an AV improved their emotional well-being

Challenges for the future Ensuring a good support structure for a growing number of AVs

Widening diversity amongst AVs

Receive local support

87%

80% Make decisions about my care

AV experiences

90%

89%

Access services more quickly

Thought the Association supported people living with MND well or very well.

feel their skills and experiences are used effectively by the Association

Access information about my condition and my care

79% To live more independently

92% Feel more supported

90% Promoting the AV network

?

?

?

Considering the use of other roles to provide additional support

Feel less isolated

78% Have more normality in my life

for expanding and developing the Association Visitor Network and other volunteer-based services in the future.

“If I didn’t have an AV, I would be in limbo. I would have to work a lot harder to find out various things...Quite frankly nothing would be as simple.” Carer

Over the coming months, we will be looking at how we can practically deliver this and how we might support and manage a larger network. Some of the key findings from the research can be found in the infographic on this page.

The research will help us make a fabulous service even better.

We know there are still some areas of the country where we don’t have enough AVs so we are very keen to recruit more volunteers to ensure that everyone who wants an AV can have one.

If you are interested in receiving a copy of our infographic or becoming an Association visitor and joining this hugely successful team please email: volunteering@mndassociation.org

Cricketers are 113,000 not out!

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HEN it comes to raising money of colourful characters from the Lloyd’s of for the MND Association, this London insurance market, who have not team of cricketers has certainly only provided us with great competition come up to the wicket. on the field of play but also contributed A staggering £113,000 has been raised mightily to the club’s coffers through for the Association by members of the their bonhomie and generosity at the bar!

Menorca Cricket Club (MCC) in honour of the club’s founder and former player, Quentin PalmerBrown who was recently diagnosed with MND. Since February, when the club officially agreed to support the Association, members Members from Menorca Cricket Club celebrate raising £113,000 for the MND Association have shown their support by taking part in a variety of events Several of them have returned with their including the 10k Mitja Marathon, a charity own village sides, once again helping cricket day which raised £100,000, a 12k to swell our fixtures lists. Please help us run and a cycle through the Welsh hills. show our great appreciation of Quentin’s In a letter to members, Club President, efforts to promote the MCC and cricket David A Sheffield explained; “Over the in Menorca by giving generously to his years, Quentin has kindly helped arrange chosen charity.” almost a dozen tours cricket tours to If you would like to support the club, you Menorca and has introduced us to a host can visit www.justgiving.com/MCCvsMND

Shop – and give the gift of hope

S

TOCK up on your festive essentials and give someone with MND the gift of hope this Christmas.

The Association’s online shop is now open for business and is the perfect way for early birds to get hold of goodies while raising money for the Association.

The shop stocks everything from glittering gift wrap to beautiful cards along with a range of gifts and stocking fillers for every member of your family.

You will find a range of cuddly toys, pens, aprons for your budding bakers and even sets of golf balls for dad.

You can also shop safe in the knowledge that every penny of profit, and any donations, will go towards improving the lives of people living with MND. A gift of £10 can help provide a comprehensive information pack for a newly-diagnosed person, while £25 will run the MND Connect support and information line for half an hour. To find out more visit shop.mndassociation.org

Within our Christmas Collection 2015 you will discover a fantastic range of cards and gift wrap, along with stationery items and stocking fillers for the whole family.

And you can shop safe in the knowledge that every penny of profits raised will go towards improving the lives of those with MND.

Order and buy online at http://shop.mndassociation.org Order line/Enquiry line: 0345 375 1857 Last orders in time for Christmas - Monday 7 December 2015

www.mndassociation.org

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your stories: how mnd has affected your lives

Simon Hailstones, with his wife, Angie

Sharing our experiences of MND Simon Hailstones sadly lost his wife, Angie to MND last year. He wrote to Thumb Print to share his experiences of caring for someone living with MND.

M

Y darling wife Angie was diagnosed with MND in April 2013 and sadly lost her fight in October 2014, aged just 50.

Our life together was fantastic, we loved our holidays, especially to Sri Lanka where we married on the beach in August 2011 and planned to retire when we were 55.

We had a feeling she had MND before her diagnosis, so read everything we could find, particularly the information on the Association’s website. Doing this helped us accept the diagnosis and enabled Angie to bravely face up to what was going to happen.

I want to share our experiences and help dispel fears people may have.

Angie was terrified when we were told that, as the disease progressed, she would be unable to eat and would have to be fed via a tube.

I was unaware Angie refused to discuss tube feeding with anyone. It was only during a visit to the hospice, where they saw how distressed I was about Angie’s weight loss, that they calmly explained the benefits.

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I broached the subject with Angie and she agreed to see the hospital nutritionist.

Angie had a feeding tube fitted in June 2014 and said it was the best decision she had made. I would recommend that anyone with MND discusses the benefits of tube feeding as soon as possible.

Many people associate a hospice as a place where you go to die, but please don’t. Hospices provide support, advice and care.

Angie was very independent and wanted to carry on as normal for as long as possible. She said she would let me know when she needed me to give up work to look after her, but she was worried we would use all our savings.

Although I followed Angie’s wishes, my biggest regret is that I carried on working for as long as I did. We had so little time and were unable to do many things due to the rapid deterioration of her health. If you are working, consider giving up and make the most of the time you have.

Finally, utilise all the help and support

available. Our occupational therapist not only arranged equipment, but also liaised with our landlord and the Association to have adaptations made to our home.

Many people associate a hospice as a place where you go to die, but please don’t.

Hospices provide support, advice and care. The Phyllis Tuckwell Hospice cared for Angie after her feeding tube was fitted, offered advice and emotional support.

They applied for the various benefits we were entitled to and visited us to discuss her care. They also provided counselling to help me come to terms with losing her.

Angie was my wife, my best friend and soulmate. When she died my world came to an end, but rather than a sad funeral we had a celebration of her life. She loved the sun, so we wore shorts, Hawaiian shirts and sandals. Family and friends shared their happy memories of Angie while her favourite songs played.

I would like to thank everyone for their support and I would especially like to thank Val Clinch, our Association visitor who showed such love and compassion.

Patrick reflects on a chapter of his life A former paramedic, who is now living with MND, has written a book documenting his 27 year career.

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ATRICK “We are Murphy, quite good at who lives reading him. He in Somerset, uses Eyegaze to worked for communicate, the London but if he’s Ambulance feeling unwell Service for 14 or anxious it years before can be difficult joining the for him, so we West Country have to rely Ambulance on his facial Patrick pictured on holiday with his wife and family Service. expressions Sadly, Patrick was diagnosed with MND and ask ‘yes’ or ‘no’ questions. in 2012 having started to feel unwell “He is an amazing man who is dealing earlier the same year. with his illness with calm resilience. He He said: “At work I was beginning to does not complain ever! He isn’t a difficult struggle with the heavy bags I needed to person to care for. carry when on a job.

“We have had some tough and “One day, when I was at the local emotional days, but we also have shops, my left foot was dropping and I moments of laughter.” wasn’t striding out as I normally would.

The family worked together on the book, and someone would type as Patrick “We have had some tough and dictated his stories. emotional days, but we also have When he started to lose his voice, Patrick moments of laughter.” used his Eyegaze to type it himself.

“At first we thought my symptoms He said: “I could spend most of were due to the statins I had been taking my waking hours typing up these and after 12 months experiences. I was without them I would completely focused. be back to normal.

Then, of course, it After numerous tests had to be edited.

I was diagnosed “I am fortunate to on September have family members 11, 2012.” who understand the Patrick is now cared workings of such for by his wife, Linda, technology. I am able his three sons and to make good use his daughter-in-law. of all it can offer me.

He uses non-invasive It does everything a ventilation to support laptop could do. his breathing and a “Some copies of cough assistor. my book have been Linda explained: printed and they “Patrick’s illness has were given to family been a learning curve and close friends. We for all of us. We have have a few out on had to learn to use loan, but it has not the equipment. been published.”

An extract from Patrick’s book: “This terrible incident occurred about a week before Christmas.

“I had not been doing A&E work for very long, and still needed to gain more experience in this field.

This call was a turning point and had a deep impact on me. It was early one Sunday morning when a motorcyclist on a yellow Suzuki 1300 bike was travelling along the A13 from Dagenham towards Rainham.

“I can only guess that he was travelling at a considerable speed.

Further down the road a red Escort came out of a side road into the path of the speeding motorcyclist.

This was to be the car driver’s last mistake, in an instant the bike hit the car with such force that the car was turned over onto its roof.

“Both men were killed outright, both had broken necks, the motorcyclist also had massive facial injuries.

“There was an eerie silence at the scene, I felt that there must have been something that we could do, but realistically with their horrendous injuries there was nothing we could do.

“Both of these men were about 30 years of age, and I could relate to them as I was in my mid-thirties at the time.

“Just like myself, I imagined that they might well have been married with young children.

“This really brought home to me that we are all hanging by a slender thread and in an instant our lives could be taken from us.

“That evening when I got home I gave my wife and children a really big hug.”

www.mndassociation.org

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volunteering

More volunteers means more great things are possible If you thought you were too young to become a volunteer it’s time to think again.

Thumb Print meets four young volunteers who have found that volunteering has a made a huge difference to their own lives, as well as those living with MND.

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HATEVER your age you can play an important role in the Association’s fight against MND. The Association is extremely fortunate to have a large number of volunteers, all of whom use their skills and experiences to support the MND family.

For younger people, becoming a volunteer can provide useful work experience as well as being an opportunity to develop new skills.

“There’s a sense of satisfaction knowing that what you do, no matter how little or how much, makes a difference for someone.”

It was these reasons which inspired Ross Marshall, 25, from London, to take up a role as a local services research volunteer for the West London and Middlesex Branch of the Association.

He explained: “I recently graduated from university so I am currently looking for work.

“A friend of mine, Janis Parks, who is also Chair of the West London and Middlesex

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Sinead McCoy and Alana Hughes, right, pictured collecting money on behalf of the MND Association

Branch, introduced me to the Association.

I started helping out with small things, then I created a directory featuring all the services in the area which might be useful for people living with MND. “My work also includes helping to raise funds by making applications to charitable trusts, I shelp out during branch events and take part in collection days.

“There’s a sense of satisfaction knowing that what you do, no matter how little or how much, makes a difference for someone. That feeling is difficult to describe, all I can say is that it feels good.”

Luke Anders-Lynch, 19, from The Wirral, Merseyside, has a full-time job, but feels that volunteering for the Association gives him a sense of balance.

He said: “My role is to control the social media platforms for the Wirral Group. I took up this role a little over two months ago and can already see our following is growing.

“The ability to just pick up my phone and send out a tweet which will reach people who have a similar desire to make a difference is fantastic.

“Before I joined the Association I knew

very little about motor neurone disease, but my short time working for the Association has taught me a great deal and I now feel passionate about what I do.”

Sammy Clarke, 23, from Portsmouth has a very personal reason for wanting to become a Sammy Clarke volunteer.

Her father was diagnosed with MND in 2011 and she has seen at first hand just how cruel and relentless the disease can be.

“I volunteer with a fantastic group of very dedicated people. I enjoy working with them and also learning from them.”

As well as working as a waitress, Sammy is a volunteer for the Portsmouth and South East Hampshire Group, where she is an events co-ordinator.

She said: “I help out with fundraising events where I can, and so far, I have

Alana has been inspired to work for the Association by her stepfather Gerard, who was diagnosed with motor neurone disease in 2010.

She said: “Gerard’s quiet positivity is incredible. I thought, ‘If I can’t go into a lab Ross Marshall h and find a cure, the Luke Anders-Lync least I can do is get involved with the Association in any way I can.’ been involved with a few local events.

“I’ve had the opportunity to speak to I recently organised a charity gig politicians about something I’m really with a good friend in aid of the MND passionate about and, when they take it Association and The Alzheimer’s Society. on board, it’s a great feeling.

That night was a huge success and “If anyone is thinking of volunteering I everyone had a great time. I am looking would definitely recommend they to organise a bigger event for next year. get involved.

“I volunteer with a fantastic group of “We are keeping the momentum going very dedicated people. I enjoy working and more volunteers doing so means with them and also learning from them. more great things are possible.”

“I enjoy knowing that I am helping to raise awareness and funds for such an If you would like more information amazing charity.” about becoming a volunteer, please Growing the Northern Ireland branch’s contact our Volunteering Team on 0345 campaign network is one of the key 604 4150 or email priorities for Alana Hughes who is 22. volunteering@mndassociation.org.

fundraising

Steve pushes himself to the limit

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MAGINE running for 48 miles over 30 summits, climbing up to 17,000 ft.

This was the immense challenge facing Steve Cliff, who is living with MND, when he took part in the Joss Naylor Challenge in the Lake District in July.

Steve was diagnosed with MND in April and decided that he wanted to raise as much money as possible for the Association.

“One can sense the depth of feeling just reading the kind words and generous gifts provided by donors.”

He explained: “While I was at university I discovered marathon running and fell running and I used my running skills to raise money for other charities.

“The impact of a diagnosis of MND on oneself, friends and family, cannot be explained.

“Once I had, in some format, reconciled myself with this unexpected development

Steve Cliff with Joss Naylor, right, who founded the Joss Naylor Challenge

in my life, I decided that I should at least try and make a difference to those who are given the same prognosis.

“The Joss Naylor Challenge has always been in my mind and this was the time to strike with a clear goal to support those diagnosed with the disease.”

After three month’s training, Steve arrived at Pooley Bridge with a crowd of 12 to cheer him on.

Steve said: “I wanted six month’s training, but didn’t have the luxury of time. With so little training under my belt, I knew I had to make the most of my strength in the early sections and just hang in there for the tougher second half.

By the time Steve finished the challenge, he had been joined by 22 people, with 40 more waiting for him on Greendale Bridge.

The challenge took 13 hours and 53 minutes, a very healthy hour and seven minutes ahead of schedule and has raised more than £12,000.

He said: “One can sense the depth of feeling just reading the kind words and generous gifts provided by donors.

The love of friends and family is a great solace and healer of wounds.”

If you would like to support Steve, you can donate, via JustGiving at www.justgiving.com/Steve-Cliff For more of Your Stories, turn to pages 12 and 13. www.mndassociation.org

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support groups When faced with MND, it can be comforting to know there is somewhere to go for guidance and advice, or simply a chat over a cup

‘We are all part of one big family’

of tea with people who understand. Here we meet two couples who have found support and friendship through their local groups.

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EREK NICHOLSON says his local support group was best described by a volunteer who said quite simply, “We are one big family.”

Derek, who lives in Darlington with his wife, Pauline, has been living with MND since he was diagnosed in December 2012. Pauline is Derek’s carer and the couple say that they gain a great deal of help and advice from their local support group, which is run by the Cleveland Branch of the Association.

Derek, who is a former teacher, explained that the group meets at a nearby garden centre where visitors are able to have a chat with others over a cup of tea.

He said: “It is good to share experiences with others and form friendships with people in a similar position. It is very well supported, around 30 people came to the last meeting.”

Derek described how at the last meeting, someone attending their first meeting had been able to receive support with communication aids.

He said: “He was communicating with sign language and by using his mobile phone, but Luke Rutter, who is the branch treasurer, went away and came back with an iPad and showed him how he could use it.”

While the activities offered by support groups across England, Wales and Northern Ireland vary hugely, Derek says he particularly enjoys the complementary therapies which are available at Butterwick Hospice in Stockton-on-Tees.

He said: “They do massages and aromatherapy to help you to relax. Going there gives me a sense of well-being.”

Pauline also finds that she benefits hugely from the carers’ meetings.

She explained: “I get a lot of advice and talk to people who are going through the

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Derek and Pauline Nicholson

same things as me. “They can sympathise and understand.”

Ian Bealing and his wife, Margaret regularly attend the drop-in meetings held by the Northamptonshire Branch of the Association at a garden centre in Northampton.

Margaret was diagnosed with MND three years ago and Ian cares for her at their home in Rushden.

Ian and Margaret Bealing

Ian explained that he found it interesting to see how others were coping with the disease and found it comforting to know that they are not alone.

He said: “I consider us to be very fortunate as Margaret’s progression

appears to be slow. MND does not affect any two people in the same way and it is interesting to see that.

“We get a lot of support from the group and comfort in knowing that there are people here who are going through the same things.”

The branch’s chairman, Kate Inchley, said the drop-in session was very successful and put it down to their informal nature.

She explained: “The idea for the drop-in session came from Chris, a lady who is living with MND. “She was finding that she was the only person with MND who was attending our regular meetings and wanted to find a way of encouraging more people to come along.

“With some support we managed to get the drop-in session and it has proved to be very successful – we get between 12 and 20 people attending each time.”

To find out more about the groups and meetings help by your local branch visit www.mndassociation.org/gettingsupport/local-support/branches

conferences

Conference coverage – at the touch of a button If you are unable to attend our conferences in person, don’t worry.

You can still play an important part thanks to our online live-streaming service. Thumb Print spoke to Association Conferences and Events Administrator, Chris Maden to find out more.

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ITH our conference season now in full swing it is a great time to find out more about the work of the Association and get involved by telling us what you think about the work we do.

While many people are able to travel to our regional conferences and Annual General Meeting (AGM), we understand that, for others, travelling to our venues is just not possible.

To ensure those people are still able to fully engage with the conference experience, the Association has introduced live-streaming which is now available through our website, www. mndassociation.org.

Chris Maden, Association Conferences and Events Administrator explained: “We work with a company called Wave FX. “We have a couple of fixed cameras at the back of the room, which show the

speakers, as well as a split screen, which ensures you can see the slides which are being shown as part of the presentation.

“It is also fully interactive, so you can ask questions, which are monitored and then passed on to the panel, who will answer them.

“If they are not able to answer them live, they will be answered later on.”

Chris added that the conference coverage could be viewed on a laptop, mobile device or smart TV and there was no need for additional equipment, such as a webcam.

He said: “We keep an archive of coverage of our conferences and AGM, so you can visit the website and catch-up whenever you like.”

The next live conference will be broadcast from 10am on October 25 from our Regional Conference in York.

The Association’s Website Administrator, Simon Hoggarth, co-ordinates the live-streaming service at the AGM and conference

To take part, or to find coverage from our AGM and conference, visit http://livestream.com/ eventstreamingcompany/mnda

MND family comes together at AGM and conference

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ORE than 170 people Honorary Treasurer, Anne attended our Annual Bulford, presented the General Meeting financial report and said the (AGM) and conference in Association was, “in sound person – with an additional 300 financial health and wellpeople from across the world placed for the future.” following the day’s events from A special resolution their own homes through our offering free lifetime live-streaming service. membership of the The annual event, which Association for bereaved was held at the Radisson Blu carers was passed, which met Hotel, East Midlands Airport in The MND family came together at the AGM and conference. They even had time for #SelfTea4MND! with applause by those in September was a huge success attendance. and brought together members, staff, During the day, delegates were invited A new trustee, Lindsey Lonsborough, volunteers and fundraisers from across to take part in workshops on care, was duly elected and Mark Stone was England, Wales and Northern Ireland. campaigning and volunteering and there re-elected. A question and answer In her address, the Association’s Chief was also plenty of time for networking session followed and the afternoon Executive Sally Light acknowledged the and sharing thoughts and ideas. was concluded with a talk by leading tremendous events of the past year and in In the afternoon, the main business researcher Prof Nigel Leigh. particular paid tribute to the outstanding of the AGM took place and the Chair Find out more about our AGM at work of our volunteers in caring for of the Board of Trustees, Alun Owen, www.mndassociation.org those living with MND and our dedicated outlined the Board of Trustee’s Report fundraisers who had ensured that 2014 and highlighted some of the Association’s Turn to page 34 for more from the Chair was a record-breaking year. many achievements. of The Board of Trustees, Alun Owen. www.mndassociation.org

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news

Time to get app happy Apps which run on smartphones and tablets can be extremely useful. Lisa Cousins, the Association’s Care Information Developer, explains how they work and how they can make life simpler.

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PPS are computer programmes that run on mobile devices such as smart phones and tablet computers. In today’s modern world, there is an app for almost everything.

New apps are being developed all the time and a growing number are being designed to make life with a disability a bit simpler.

With over a million apps available, knowing where to start can feel daunting, especially when prices range from those which are free, up to several hundred pounds. It may be worth trying out some free apps before parting with your cash.

We have had a number of requests for information about apps for people living with MND, so we’ve added a new app section to our website www.mndaassociation.org/apps While the list of apps will expand over time, at present they fall into the following sections: Managing your care: Communicating and co-ordinating your care with your carers can be as easy as sending a text message. These apps combine group messaging, calendars and to-do lists to allocate tasks and allow trusted carers to see what’s happening.

Getting out and about: These apps help you find accessible venues and travel options. From disabled toilets and parking spaces to pubs, restaurants and sports grounds, these apps can take a lot of the stress out of planning an outing.

Liam Dwyer, who is living with MND, using his iPad

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Monitoring your health: Keeping records of your symptoms, appointments and medication can get complicated. These apps help you keep track. Many include

interactive areas and health reports you can share with your doctor.

Communicating: If your hands have been affected by MND, apps can use speech to type emails or notes for you. If your speech has been affected, apps can help you to communicate. You can create sentences using pre-programmed phrases or type your own, and the app will speak it for you

Apps to help you to manage your care Jointly makes makes communication and co-ordination between your carers as easy as a text message. It combines group messaging, calendars and to-do lists enabling you to allocate tasks and communicate with everyone all at once.

CareZone helps you keep track of medications, doctor’s instructions and how you have been feeling. You can share updates with others who have access such as friends, family and carers.

Rally Round makes it easy for family members and friends to co-ordinate how they all help out a loved one. Everyone invited can easily see what jobs need doing and what jobs have already been done.

Apps for when you’re out and about WheelMate lets wheelchair users around the world locate nearby accessible toilets and parking spaces. All locations are added and verified by fellow users to ensure the information stays up-to-date and useful.

Inclusive Britain allows you to locate hotels, restaurants, pubs, shops, museums and more based on your specific access requirements and location. Add and review your own accessible locations to help others.

Euan’s Guide helps you to find accessible places to visit based on first-hand reviews by other people with disabilities. Listings include cinemas, theatres, sports grounds, stations and much more. Includes GPS to locate venues nearby.

in a choice of voices.

The NHS also has a list of general health apps that have been reviewed to ensure they are clinically safe and trustworthy.

You can visit their app pages at http://apps.nhs.uk.

Which apps work for you?

Write to Thumb Print at editor@ mndassociation.org

Apps for health Symple lets you monitor your symptoms over long periods of time. Designed by patients and doctors, it tracks up to 10 symptoms at a time, records your medications and other factors that influence how you feel.

Health Mapper allows you to monitor your health conditions to help you spot triggers and patterns, and better inform your doctor on how you’ve been. Features include medication reminders, charting tools and health reports you can share with your doctor.

Pockethealth helps you find your nearest NHS services including A&E, GP, dentist and pharmacist. It also includes a health A to Z from the NHS website. You can also use the app to save your emergency contacts and to call emergency services wherever you are in the world.

Apps for communication Grid Player helps people who cannot speak or who have unclear speech to communicate. Create sentences using pre-programmed phrases or type your own. Sentences that you create are spoken out loud.

Verbally brings speech to those without and enables real conversation with its simple, intuitive design. Just tap in what you want to say using the keyboard or the built-in phrases and Verbally speaks for you.

SoundingBoard allows you to make your own custom communication board using symbols or your own words. The app includes pre-loaded communication boards, or you can create your own.

Getting to the heart of good care

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HE Motor Neurone Disease Association Outcomes Standards are a set of meaningful descriptions of good care expected for people living with MND. And they describe what we could measure to see how well the objectives are being achieved.

The Association care mission is, we improve care and support for people with MND, their families and carers.

The Standards break this complex and challenging aim into bite-sized chunks.

They are closely linked with our MND Charter and replace our Standards of Care.

When developing the Outcomes Standards we set out to have a document which laid out the essential elements of good care for people living with MND: to inform our work and in a format recognisable to personnel working within the social care system.

In 2010 three outcomes frameworks were introduced in England: public health; adult social care and NHS; with the aim to provide a focus for action and improvement across the health and social care system. The Standards are set out in a similar format to the national frameworks and use the headings of the NHS outcomes framework to demonstrate their relevance to MND. We will produce appropriate documents for Wales and Northern Ireland in due course.

The Standards will provide a focus for our data collection and help us to build a picture of the quality of provision for people living with MND and their carers.

We will use the Standards to identify areas of greatest need and target our attention on them through direct action or campaigning. We will use them to engage service providers in discussion and negotiations about good practice, service development and areas for improvement.

We hope that health and social care professionals and commissioners will use them likewise when structuring local provision. Please take a look at the Outcomes Standards at the following link. http://www.mndassociation.org/ outcomesstandards/ www.mndassociation.org

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fundraising feature

Picture this – a new hobby to help you relax No longer just a past-time for young children, colouring for adults is emerging as a hobby for anyone seeking a moment of peace and relaxation. Thumb Print Editor Clare Brennan spoke to Julia Mepham, who sadly lost her father to MND, to find out why she believes it could be helpful to those living with MND and their carers.

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EALING with MND is tough and the devastating effects take their toll on everyone, whether they are living with the disease or caring for a loved one.

Taking the time to relax can be challenge on its own, while the prospect of taking up a new interest or hobby is something which is just no longer a priority.

But a new trend for adult colouring books may provide the answer for carers or people living with MND, who are looking for a simple, inexpensive activity which can be enjoyed regardless of age, either alone, with others, or as a family.

Julia Mepham, from Middlesex, found

that colouring helped her through the darkest of times following the loss of her beloved father, Roy, who died from MND in 2010.

Having helped her mother care for her father for eight months, she struggled to come to terms with his death and the void left behind.

She said: “Caring for my father was very intensive and when he died I felt a lot of emotions – there were a lot of feelings to process.”

She explained how, about a year after her father’s death, she attended a workshop led by the Tashi Lhunpo Buddist Monks where she was able to watch the

monks making sand mandalas – traditional patterns used in many cultures – and have a go herself.

Soon afterwards, she found a colouring book, containing images of mandalas, in a high street shop and took it home to try.

She said: “I found it very relaxing. While looking after my young niece Megan one day, I found that she enjoyed colouring the mandalas with me too and then my sister and my Mum joined in.

“One day all of us sat in Mum’s lounge colouring in mandala books and listening to relaxing music. It was a very nice activity to do while coping with our loss – it brought us all together.”

Julia described colouring as ‘therapeutic and peaceful’ and added that she felt it could even be of benefit to those with little movement in their hands.

“Caring for my father was very intensive and when he died I felt a lot of emotions.”

Julia Mepham, who has found that colouring helped her to cope with the loss of her father, Roy

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She said: “It may still be pleasurable for the person with MND to work with a family member or carer by selecting a picture from a book, along with the colours, and have someone colour it for them. It is then a joint piece of work. It is enjoyable to see the end result and everyone benefits from the peacefulness.”

A range of colouring books are available on the high street and through online stockists.

If you would like to try colouring, have a go using this image taken from Lost Ocean – An Inky Adventure and Colouring Book by Johanna Basford, published by Virgin Books on 27 October, priced £12.99 www.mndassociation.org

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campaigning

Coming to a street near you!

At a time of huge pressure on the public purse, the services people with MND and their families rely on are at risk. We must use our collective voice to ensure existing services are protected and new services fought for. Alice Fuller, the Association’s Local Campaigning Team Leader, explains why now, more than ever, we must make ourselves heard by local decision makers.

What is local campaigning?

It’s all about raising awareness among those best positioned to improve services for people with MND. This includes politicians, commissioners, or people who buy services, service providers and health and care professionals. If they’re not aware of what needs to change, and don’t think local people are demanding change, they’re unlikely to change anything.

Sometimes we need to be vocal, but often campaigning is quieter than you might think, and requires talking to the right people behind the scenes.

Why is it important?

Campaigning is more important now than ever. As the Government continues to reduce spending on public services, the effect is being felt by people with MND and their carers. Across healthcare, social care, housing and benefits, the cumulative effect is likely to be significant.

There are two ways the Association can respond to this. One way is to fund services ourselves. At present we subsidise many things from equipment like wheelchairs and communication aids, to housing adaptations and nurse posts.

Another way is to make sure decision makers hold up their end of the deal.

Certain statutory services are protected

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Campaigners help to get the Association’s voice heard

by law, but many are not. For example, a nurse post that has existed for 10 years can be cut at the stroke of a pen by a local commissioner. If we’re not holding them to account, services will be lost. That’s where campaigning comes in.

What have we done so far?

Our volunteers and supporters have achieved some amazing things for us locally, from signing up whole councils to the MND Charter to mobilising local

supporters to write to their politicians to save nurse posts. We want to build on these successes. We have recently doubled our Local Campaigning Team from two to four members of staff to help us to strengthen our voice and win even more improvements to services locally.

What’s next?

We’ve already started talking about what needs to change locally with our volunteers, branches and groups and

More voices are heard thanks to Charter success

S Campaigns contact, Greg Broadhurst

colleagues in the regions, and will be acting on this over the coming months.

We will also be introducing new training events and resources to equip our volunteers with the right skills and knowledge to make a difference locally.

Watch this space...

How do members get involved?

You can campaign with us no matter how little or much time you have to offer. Visit www.mndassociation.org/ campaignwithus where you can also find contact details of the Campaigns Manager for your region – they’re waiting to hear your ideas for local campaigns.

“As the Government continues to reduce spending on public services, the effect is being felt by people with MND and their carers.”

HEFFIELD City Council has become rapidly changing needs of people living the 16th council to adopt our with MND. MND Charter.

He said: “Anyone who has witnessed The Charter, which was created by the someone suffering with MND knows that MND Association in 2012, is a five-point patients can experience a rapid decline plan which sets what good care for people in their health, losing their mobility and living with MND looks like. ability to speak. It is vital that the NHS In July, thanks to the hard work of responds rapidly to this changing level Commander Mel White, chair of the South of need.”

Yorkshire branch, the council agreed to adopt the Charter.

Our local councils control many of the services people with MND rely on to live independently – services such as social care, housing adaptations and support for carers, so it is vital that those running our councils know about MND and understand the needs of those living with it.

Mel explained: “Having been Sheffield city councillor Mary Lea adopts the MND Charter at the city’s ‘Soak a Scientist’ event, which raised money for the Association out there among the masses trying to raise awareness of this terrible He also pointed out the need for disease, it is very clear that people living guidance for professionals in caring for with MND, and those who care for them, and supporting someone with MND. receive considerable sympathy. But this He said: “The Department of Health has is not enough and we should strive to asked the National Institute for Health influence decision-making at the highest and Care Excellence (NICE) to produce levels, particularly in the areas of health a clinical guideline for the diagnosis, and social care and make sure that the treatment and care of patients with MND. care on offer is joined up.”

We expect this guidance to be published Prime Minister, David Cameron has also in February 2016.” responded to the MND Charter, which was This long-awaited guideline came about handed in to Downing Street in June. following several years of campaigning In his response, he acknowledged the by the Association. See below to find out need for services to respond quickly to the more about the NICE guideline on MND.

Guideline draft is published by NICE

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N 1 September 2015, the National Institute for Health and Care Excellence (NICE) published the first draft of the long-awaited guideline on MND. As a registered stakeholder for this consultation, the Association submitted a formal response after seeking feedback from members to ensure what we said best reflected the needs of people with MND and their carers. Huge thanks to the 390 people who shared their views.

The NICE guideline, when published in its final form in February 2016 is designed

to improve health and social care by making recommendations to health and social care professionals on how best to care for someone with MND. We know that NICE guidelines can lead to improved care. In 2010, NICE published a short clinical guideline on non-invasive ventilation (NIV) for people with MND. Since the guideline has been published, many more people with MND have been offered NIV. We hope the full guideline on MND will have a similar positive impact on services for people with MND. We hope it will empower people with

MND and their carers to seek the type of care recommended by the guideline, as well as guide professionals in what services they should be providing. When it is published in February 2016, we will be launching a campaign encouraging the NHS to implement the recommendations in the guideline. We hope members will support this work.

For further information, contact public affairs manager, Alison Railton on 01327 844911 or at alison.railton@mndassociation.org www.mndassociation.org

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fundraising

Cyclists steer their way to fundraising success Ray and Claire Bloom, who took part in the Prudential RideLondon Surrey 100 Cycle to raise money for the Association

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Adventurous cyclists from up and down the country have been busy using pedal power as a way of generating thousands of pounds for the MND Association.

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N astonishing amount of money has been raised thanks to the extraordinary efforts of our fundraisers, who have faced gruelling conditions to achieve their aim of raising both awareness and money to ensure the Association can continue its vital work in caring for those living with MND. Inspired by Bryan Challenor, a farmer from Abergavenny, who is living with MND, more than £86,000 has been raised by CyclingforBryan, a challenge which saw eight cyclists take part in a thousand mile cycle from John O’Groats to Land’s End. Many of Bryan’s family members, including his wife, Marion, daughter, Catherine and his son, Nick, also joined the event, which included a charity auction ball and entertainment evening, helping to raise an extraordinary £86,000.

Bryan said: “I have been overwhelmed by the support of my family and friends who achieved such remarkable success.

I am so proud and in awe of everyone who has helped.

“I need the support of the MND Association and feel honoured to be able to present them with such a vast amount of money to invest in the care of others and into research so that one day it might be possible to find a cure for this devastating disease.”

Bryan Challenor, pictured centre with members of the CyclingforBryan team who travelled from John O’Groats to Land’s End

Father and son, Rob and Will Sanderson crossed the English Channel for their challenge, Cycle for Kate, which was organised in memory of their wife and mother, Kate, who lost her battle with MND in December 2014.

The Cycle for Kate team

Following a route from Calais to Perpignan, Rob and Will, together with nine friends, took part in the event in July.

So far, the team has raised £33,350 for the Kate Sanderson Tribute Fund with more donations continuing to pour in.Closer to home, a 50-strong MND team conquered soaring temperatures in the capital when they took part in the increasingly popular Prudential RideLondon Surrey 100 Cycle.

Among those taking part were husband and wife, Ray and Claire Bloom, who cycled in memory of Claire’s younger brother, Russell, who died from MND in September 2012, aged just 38.

Claire, who is a sprint triathlete for

the GB age group team, explained: “Before he was diagnosed with MND, I knew very little about it. It’s a cruel and dibilitating disease.

Since his passing, my family have done all kinds of charity events to raise both funds and awareness for the Association in his memory.

“It was a wonderful day with great support and a fantastic achievement for all those who completed the course.”

Cyclists, walkers and runners all came together in the name The Warriors at the Water event attracted 150 people aged between five of the Association at a special and 77, including this group of children event held in June.

Called Warriors at the Water, the One of the cyclists, Paul Wedgwood sponsored cycle, walk or run, took place took the challenge one step further by around Rutland Water and was organised continuing his ride over the next three

by Phil and Charlotte Newby, together days back up to his home in Edinburgh. with Ellen Chisholm from the Stamford While the total raised continued to rise, branch of the MND Association. it currently stands at £43,226.

Phil Newby said: “Organising an event “It was a wonderful day with that has raised so much money has been great support and a fantastic great fun, so was seeing 150 people sporting the blue, orange and white of the achievement for all those who MND Association.” completed the course.”

The event was a sell-out, with 150 people, aged between five and 77, taking part by either cycling around the reservoir or by walking or running a 12-mile loop of its peninsula.

If you have been inspired to get on your bike for the MND Association, contact the fundraising team on 01604 611860 To find out more about Tribute Funds, turn to page 33 or call 01604 611864 www.mndassociation.org

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care

Caring for our carers

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ORE than half of people who look after someone with MND spend more than 100 hours a week in their caring role, some 22% higher than reported in the National Carers’ Survey for England in 2013.

This is just one of the startling statistics to come from our Association’s Carers’ Survey 2015. The survey took place during March and April 2015 and more than 450 carers responded.

Those who answered the survey said they carried out an enormous variety of tasks including personal care and lifting, while their main worries surrounded what would happen if they were to fall ill themselves.

They also said they feared for the future and whether they would be able to cope.

According to the survey, almost two thirds of carers don’t receive any benefits or allowances and almost half don’t take planned breaks from their caring responsibilities. This is despite the right to a carers’ assessment under the Care Act. The Association’s Director of Care (North), Steve Bell, said: “The results of the survey illustrate what we need to do to provide the right support for carers, for example the work plan being developed will include a revision of our carer’s pack, and a wide promotion of the right to a timely carer’s assessment.

“The results will be used to shape the Association’s strategy for 2017-2020.”

We provide information for carers to help them think about their own wellbeing.

This includes a main guide, Caring and MND: support for you and a summary, Caring and MND: quick guide.

Feedback has been very positive: “The Carer Guide gives wonderful advice from the very first page. I have been a carer myself, over many years and in very different circumstances. I can relate to many instances included in the pack. It has a very practical, informative but soft approach... exactly what’s needed. I am learning to be kind to myself.”

Both guides are still available, but currently being updated. The new versions will include information about the new Care Act for England and future changes

for carers in Wales and Northern Ireland.

The main guide is also being redesigned in line with our other publications, such as Living with motor neurone disease. This means the new carer guide will be lighter in weight and all of our core resources will reflect a familiar layout and friendly feel. We hope to launch the new carer resources in December.

In the meantime, you can order the existing carer publications from our MND Connect helpline: 03457 626262 or email: mndconnect@mndassociation.org You can also see our web pages for carers at: www.mndassociation.org/for-carers

PERSONAL STORY: Jen McClenaghan, from Belfast in Northern Ireland cared for her mum, Patricia, alongside her brother, sister and father for three and a half years.

Patricia sadly died in November. Jen described the experience of caring for her mother as ‘physically draining’ but added that she wouldn’t have had it any other way.

She explained: “My mother did everything for me and my family, so when she was diagnosed with MND, we wanted to care for her.

“It was constant, 24 hours a day, and we did use respite care, but then we struggled with the fact that she was being looked after my someone else.”

Jen McClenaghan and her family, cared for her mother, Patricia, for almost four years

Jen said that her family had been well supported by the Northern Ireland branch of the Association, in particular by their Association visitor, who helped the family to access the relevant benefits and provide equipment.

Help to navigate benefits system

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OME of the money raised from the Ice Bucket Challenge will be used to provide a new welfare benefits service for people with MND and their carers.

The benefits system is complex and sometimes difficult to navigate, especially for people living with a challenging condition such as MND. We conducted a survey last year to find out about experiences of the benefits system. Almost half of the 73 people who responded, told us they were confused and did not know which benefits to apply for, and a third found filling in claim forms ’very difficult’.

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The project will aim to provide the right kind of support and advice to make the process of applying for benefits easier and less stressful.

We are planning to recruit and train a team of volunteers to help with completing claim forms for Personal Independence Payment and Attendance Allowance. We will also be working in partnership with the Citizens Advice Bureau to offer home visits providing a specialist advice service to help with complex issues, such as preparing for appeal hearings.

Initially we will be piloting this approach in Greater Manchester for a six month

period from November 2015 to April 2016, working in partnership with Manchester Citizens Advice Bureau. This pilot will help us make sure the service is effective before we roll out the project across England, Wales and Northern Ireland.

We are currently recruiting volunteers to the new Benefits Navigator role, so please get in touch if you are interested in taking part in the project.

For more information contact Dawn Eckersley, Welfare Benefits Project Manager at dawn.eckersley@mndassociation.org

Looking after yourself in winter

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N the last edition of Thumb Print, we explained the importance of having the flu jab if you have MND or if you are a carer.

The flu jab is available from September from your GP and, although it cannot guarantee you won’t get flu, the symptoms are likely to be less severe if you do.

As there is a higher risk of chest infection and related conditions during winter, you may also want to ask about the vaccine to protect against pneumonia.

There are other ways in which you can protect yourself from illness during winter.

Good hand hygiene is important to help avoid infections. Alcohol hand cleansers can be useful – keep one nearby for yourself and carers to use.

As MND is a progressive disease, it is important to communicate any changes in your symptoms to your health and social care team during appointments.

You may be more

vulnerable to chest infection during the winter when more people are affected.

This risk increases again if you experience swallowing difficulties, as fluids or bits of food may ‘go down the wrong way’ into your airways. This is known as aspiration and can cause chest infection.

Let your dietitian and speech and language therapist know if your swallowing difficulties get worse. They can advise on consistency of food and drink, swallowing techniques and tube feeding. Your GP can refer you to these or other specialists if needed.

If your mobility is affected, your physiotherapist can advise on how to avoid slips and trips, and how to manage falls if they do happen. An occupational therapist can assess your needs and take into consideration safe access to your home.

With a higher risk of falls in icy conditions it can help to avoid non-essential

journeys. Keep a list of personal contacts or care workers by your phone, who can collect prescriptions from the pharmacist or go shopping for you if needed.

You can also order groceries and supplies online, for home delivery from a local supermarket.

Further support You can find out more about seasonal vaccines and the pneumococcal vaccine at www.nhs.uk We provide the following information sheets which may help in relation to winter health: 7A – Swallowing difficulties 8A – Support for breathing problems 11A – Clothing We also provide an MND Just in Case kit which GPs can order and fill with medications to be kept in the home. These medications can be used by a carer or appropriate healthcare professional, if needed in an emergency, for example to ease breathlessness or anxiety.

For more information about our publications, the Just in case kit or how to protect your health if you are living with MND, contact MND Connect on 03457 626262 or mndconnect@ mndassociation.org You may also find our online forum useful for tips. The forum is a safe place for people with or affected by MND to share experiences and support: http:// forum.mndassociation.org

More tips on winter health: If you use a walking stick or frame, check the rubber stops haven’t worn to avoid slipping.

Keep a stock of suitable home remedies and a first aid kit at home. Your pharmacist and health and social care team can advise.

Carry waterproof covers with you if using a wheelchair or scooter outdoors.

Temperature control is more difficult with MND if you become less active. When going into different environments, wear layers so you can remove or add clothing as needed.

If you’re not able to generate body heat through movement, aim to keep your living room at 21°C (70°F) and your bedroom at 18°C (65°F).

In case of power cuts, ensure you have spare batteries or back-up power if you use ventilation for breathing support.

For advice on how to make your home energy efficient and reduce heating bills, or about grants, benefits and payment schemes that may help, call the Home Heat Helpline on 0800 33 66 99 (free from landlines) or 0333 300 33 66 (if calling from a mobile).

www.mndassociation.org

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care

Coping with changes to thinking, behaviour and emotions

Speak to your specialist team if you have noticed any changes to your symptoms

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MND may affect how some people think and behave.

Here we look at support to manage these changes, and what the MND Association is doing to raise awareness about this aspect of MND.

F

OR many years, it was thought that MND affected only the body and not the mind. However, research has shown that up to half of all people with MND may experience some changes to how they think and behave.

These changes can affect people in different ways. For some, the changes will be subtle and have little effect on daily life. For others, the changes may be more apparent and support may be needed to manage daily routines. Up to 15% of people with MND will experience a form of dementia known as frontotemporal dementia (FTD), which needs more intensive support.

In some cases, the person experiencing changes may not be aware they are happening, and it will be a carer or family member who notices instead.

It is important to speak to the MND specialist team who can assess symptoms and rule out other causes. Fatigue or infections, for example, may cause confused thinking.

People with MND, and those who care for them, can experience a range of different emotions.

Some people with MND may also

experience emotional lability, where they cry or laugh uncontrollably. This may happen at inappropriate times.

Recognising this as a symptom, making other people aware it may happen, and getting support from professionals, may make it easier to manage. Some people also find certain types of medication useful.

Who can help?

If you’re concerned about changes to thinking, reasoning, behaviour or emotions, speak to a healthcare professional. They can use a screening questionnaire such as the ECAS (see panel) to assess for changes. If the assessment shows any signs of changes, a full assessment by a psychologist should follow. Recognising that changes are happening can be the first step to getting support.

The health and social care team can give more information about local support and services for people experiencing changes, and for carers and family members. Caring can be more challenging with these changes.

We have three care information sheets that give more detail and tips

We’re working to raise awareness about this aspect of MND through:

Promotion of the ECAS tool and support for professionals The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) tool is a first step in assessing changes in thinking and behaviour in MND. It was designed as part of an MND Association-funded research project at the University of Edinburgh. The screen takes 20 minutes to complete and can be used by any health or social care professional.

The Association is currently

developing a project to roll-out use of the ECAS tool across England, Wales and Northern Ireland, to train professionals in its use and to develop appropriate care pathways.

Support for carers

As part of this work, we will also be commissioning work to identify methods of behavioural intervention that will support carers and reduce carer burden.

on managing changes to thinking, reasoning, behaviour and emotions: 9A – Will the way I think be affected?

For people with MND. 9B – How do I support someone if the way they think is affected?

For carers, partners, family members and friends of people with MND. 9C – Managing emotions.

Information about the range of emotions that people with MND may experience.

We also have a booklet for health and social care professionals, to help them recognise and support people affected by changes in thinking and behaviour, called Cognitive change, frontotemporal dementia and MND. Download at www.mndassociation.org/ publications or order printed copies from MND Connect.

If you would like to find out more about changes to thinking and behaviour, please contact MND Connect on 03457 626262 or email mndconnect@ mndassociation.org Turn the page for more information about related research.

People with MND may experience changes in: • thinking and learning • language and communication • behaviour and emotions.

This can make it more difficult to: • make and carry out plans • start and finish tasks • process information and make decisions or solve problems • recognise and respond to other people’s feelings • manage emotions.

www.mndassociation.org

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research

Proteins, pyramids and palm trees: Research into cognitive change The Association is funding biomedical and healthcare projects which aim to work out the similarities and differences between frontotemporal dementia (FTD) and when this condition is combined with motor neurone disease. Here we look at two projects we are funding.

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ND and FTD are thought to be the ends of a spectrum of overlapping conditions, with the middle of the spectrum being referred to as MND-FTD, when FTD is present at the same time as MND. While the clinical symptoms of these conditions are different, there is an overlap in their underlying genetics.

This is why when discussing the inherited form of MND, doctors will now ask if there is a family history of FTD.

Studying brain tissue in MND and FTD Dr Olaf Ansorge and Professor Kevin Talbot of Oxford University will be leading a biomedical project aimed at identifying cell changes in the brain tissues of people who had MND, FTD or developed both conditions.

The aim is to identify which brain cells are most likely to be affected by faulty proteins known to contribute to both

conditions, which will explain the genetic differences between MND and FTD. This will be achieved by studying postmortem brain tissue, looking at the typical signs which show if cells are affected and how this relate to genetic changes.

Dr Ansorge explained: “Understanding why some cells are affected and not others is crucial for developing therapies in order to protect these cells, and stop FTD developing.�

Is MND/FTD different from FTD? Professor Julie Snowden and PhD student Jennie Adams at the Cerebral Function Unit in Salford are looking at behavioural and cognitive differences between MNDFTD and FTD. People with MND-FTD, FTD alone, and people with neither, will perform a series of short cognitive tasks. These will test skills including the ability to recognise emotions, organise actions and understand language. Comparison of the results between groups will help reveal the differences between FTD and MND-FTD. Prof Snowden said that by identifying

differences they hoped it would lead to earlier recognition of MND-FTD, and those who at a higher risk of developing it. She explained that it may lead to improved care and targeted treatments.

You can read all about the projects funded by the Association in our Research Information Sheet E: Research we fund.

To request a copy contact MND Connect: 03457 626262, or visit: www.mndassociation.org/ researchwefund

The genetics behind FTD and MND-FTD FTD is thought to be caused by protein clumps of TDP-43, tau or FUS in brain cells MND-FTD is mostly caused by DP-43 protein deposits Proportion of FTD cases that are inherited is about 40% Most of inherited cases of FTD are accounted for by the C9orf72 gene mutation, which is also found in those with inherited MND and MND-FTD It is unknown why some people who have the C9orf72 mutation develop MND only, develop FTD only, or develop both conditions (MND-FTD).

Prof Kevin Talbot

Dr Olaf Ansorge

Prof Julie Snowden

Jennie Adams

Pictures of pyramids and palm trees are part of a psychology test used to assess if people with FTD have difficulty in remembering and using language.

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Respiratory management research

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OME or how we can people best support with MND healthcare will experience professionals difficulties in caring for with breathing, people particularly with MND. towards the end In recent of life. months, two In the past research studies 15 years, the we co-funded Association has in this area funded research Ron Stevenson who is living with MND published to investigate the best ways of treating results. The first is disappointing and these often distressing symptoms. showed that diaphragm pacing is not Our aim is always to find evidence that beneficial for people with MND, you can a particular way of managing a symptom read more about this on this page. is beneficial – for example we funded a The second study looked at another randomised clinical trial of non-invasive aspect of respiratory support – the ventilation (NIV) for people with MND experiences of healthcare professionals in 2003. caring for people with MND when It’s also important to understand what they decide that they want to stop the implications of new interventions ventilator support – whether with NIV or are for people with MND in their homes, tracheostomy.

Diaphragm pacing study results published

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HE results from a study have been published which compared the use of non-invasive ventilation (NIV) on its own, against using NIV and diaphragm pacing together.

This was to see if diaphragm pacing might help people with MND have a better quality of life and live longer.

The main conclusion from the study was that diaphragm pacing was not beneficial when used in addition to NIV, and was in fact harmful, with people using diaphragm pacing living on average 11 months shorter than those on NIV alone.

Dr Chris McDermott, lead researcher on the study, said: “This evidence shows us that for most people there is no benefit in having diaphragm pacing and that the major surgery needed is something people living with MND should not go through”.

You can read more about this on the MND Research Blog www.mndresearch. wordpress.com.

This important research highlighted the need for guidelines for professionals on the withdrawal of ventilation. By supporting the professionals, ultimately people with MND and their families will get the best possible support too.

You can read more on our research blog www.mndresearch.wordpress.com Non invasive ventilation (NIV) is often first used during the night, in response to difficulties in sleeping associated with breathing. However, as MND progresses, patients can become more reliant on NIV and may also use it during the daytime.

Patients may also receive ventilation support via Invasive ventilation tracheostomy, sometimes shortened to ‘tracheostomy’– this is where a tube is inserted into the windpipe through the neck, which is attached to a machine that can help with breathing.

Welcoming the world

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E will be welcoming the world more expected to join them before the to our 26th International registration deadline passes on October 18.

Symposium on ALS/MND which Sessions on a range of subjects will be is being held in Orlando, Florida from held including clinical management and 11-13 December. holistic care.

The Symposium is organised by Those not able to attend the the MND Association and brings Symposium in person, will be able to together researchers and health and keep up-to-date via the MND research social care professionals from across the blog which can be found at www. world to discuss the latest advances in mndresearch.wordpress.com or on MND research.

Twitter by using the hashtag #alssymp The first event was held in Birmingham in 1990 and venues since then have included Brussels, Milan and Chicago.

The Symposium is the largest medical and scientific conference specific to MND and is the premier event for discussing the latest advances in research and clinical management.

More than 900 delegates are expected to attend Last year’s Symposium was held in Brussels, Belgium the Symposium, with www.mndassociation.org

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tribute funds

Remembering Mum on their special days

Rebecca pictured with her husband, Adam, and inset, Rachael and her husband, Mark

When twins Rachael and Rebecca got married they wanted to make sure their beloved Mum played a big part in their special days, despite losing her to MND seven years earlier. Instead of gifts their guests made donations to The Patricia Jacques Tribute Fund. This is their story.

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HEN Rachael Jacques married Mark in August 2014 and her twin sister Rebecca married Adam just nine months later, someone very special was missing each time.

In 2004 at the age of 59 their beloved Mum Patricia, who was known as Joan, had been diagnosed with MND and just three years later, she very sadly died.

But when it came to planning their weddings, Rebecca, who is now Mrs Jackson and Rachael, who is now Mrs Hindhaugh, made sure that their beautiful Mum played a very special role in the celebrations. Instead of asking for gifts from their guests, Rebecca and Rachael very kindly requested that donations should be made to the MND Association through The Patricia Jacques Tribute Fund, which had been set up by them together with their father Lance, in her memory.

Rachael said: “Mum was born in a sleepy village in Leicestershire and she worked at George Wards in the accounts department for almost 19 years until she had us, when she then became a fulltime stay at home mum and house wife.

She always had a passion for interior design, undertaking courses at college in the evenings when we got older.

She would constantly be re-decorating the house or decorating for friends, doing up old furniture with decoupage

news eventually their dignity; often with little effect on cognitive function.

“It’s both devastating for the family as well as the person involved, but Mum was always so upbeat and positive, hoping that a cure would be possible one day.”

“Once we set up the fund, we chose to create the optional Tribute Fund website. It’s a lovely way of keeping someone special in your thoughts.”

The family enjoys a holiday with their late mother, Joan

and stencilling and when she wasn’t decorating you would find her in the garden which was beautiful.

“She lived in Italy for 18 months when she was 18, working as an Au Pair. She had already met our Dad at this point, but was committed to going and sent numerous letters over the months that followed, which Dad still has to this day.

On her return they got engaged.

“Not having Mum present during the planning of our weddings and especially on our wedding days was a huge void.

We felt that by asking guests to donate in lieu of wedding gifts would be a way of remembering and involving her, and keeping her in people’s thoughts.

“We also wanted to raise money for the Association, which supported Mum and us as a family through her illness.

“Adam and Mark never met her, yet they were more than happy to ask for donations in lieu of gifts for our wedding as they knew it meant so much to us.

“I think one of the most distressing elements of the disease is how cruel it is and how it slowly takes away a person’s independence and eventually their dignity.”

“Mum was a very loving, kind individual. She was very creative and artistic. She instilled the attitude that we could achieve anything and was a very supportive and encouraging Mum.” Rachael said that until Joan had been diagnosed with MND, they knew very little about the disease.

She said: “I think one of the most distressing elements of the disease is how cruel it is and how it slowly takes away a person’s independence and

It was that thought which encouraged the family set up The Patricia Jacques Tribute Fund and raise as much money as they could for the Association.

She explained: “Rebecca initially set up a JustGiving website, but then contacted the Association in order to find out how we could consolidate all the fundraising.

“Setting up the Tribute Fund was very straight forward and any queries we had were dealt with easily through email or over the phone.

“Once we set up the fund, we chose to create the optional Tribute Fund website. It’s a lovely way of keeping someone special in your thoughts.

We can not only share and record our memories of Mum but also consolidate our fundraising. It’s a place where we can privately write messages, update photos and light candles at special times and on anniversaries. It is also private and personal to you. We chose to invite family and friends to visit the site but you can keep it completely private if you wish.”

To find out more about Tribute Funds visit www.mndassociation.org/ tributefunds or telephone 01604 611864.

Rachael, pictured right on her wedding day with her twin sister Rebecca, left and their father Lance

Association team wins BMA award for ‘exceptional resource’

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E are delighted to announce that our publication End of Life: a guide for people with motor neurone disease has won Patient Information of the Year in the BMA Awards.

The Association’s Care Information Manager, Kaye Stevens (centre), receives the award

The British Medical Association said of the guide; “considerable effort and expertise has gone into providing an exceptional resource – it covers a sensitive topic and is clear and consistent throughout. It also makes very good use of patients’ viewpoints. It is superb.”

“It is so important that people with MND and their families have opportunities to discuss concerns about end of life care.”

The Association’s Care Information Manager, Kaye Stevens, who led the project said: “This award means a great deal. It rewards the courage of all those with or affected by MND who contributed with such candour about their end of life decisions.

“It is so important that people with MND and their families have opportunities to discuss concerns about end of life care. We hope this award will help to further raise awareness of their needs. Our thanks to everyone who helped make this guide possible.”

The MND Association development team included Sue Smith, Hilary Fairfield, Steve Bell, Karen Pearce and Chris James, a user review group of people with MND and carers, plus a panel of experts.

This is the second year our information has been acknowledged by the BMA, after our Living with motor neurone disease guide was highly commended and short-listed for Patient Information of the Year in 2014. www.mndassociation.org

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from our chair It was a great privilege to attend the Association’s AGM and conference in September.

The event marked the end of Alun Owen my first year as chair of the Board of Trustees – and it is fair to say it has been quite a year!

Aside from the very significant – and obvious – successes of the past year, which we celebrated and reflected on during the conference, I have also had the very great honour of meeting many of you during my visits to some of our branches and groups.

The warm welcome and sense of family, togetherness and compassion

which was always evident at those visits was also very much in evidence at the conference. It was heartwarming to hear people in the audience, with family and friends living with MND, say that they felt it too.

This is one of the very great strengths of this Association and one which will ensure that together, one day, we will fulfil our vision of a world free from MND. Until that day comes we have much to do, but we are in an excellent position to be able to continue our fight.

Financially, we are in excellent shape, made even stronger thanks to the successes of our fundraisers and the legacy of the Ice Bucket Challenge. As you know, this money has been committed to ensuring we provide the best care and support we

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down your way

Thank you

Thank you to all those who raise vital funds and awareness to support our work. Here is a small selection of recent events – share your pictures at www.facebook.com/mndassociation

Paddy’s army: An army of runners came together to take part in the Belfast Marathon to raise money for the MND Association. Paddy Cassidy is pictured centre with the team which included his four children. The runners, Sinead Cassidy, Maeve Cassidy, Conor Cassidy, Maria McMullan, Ryan McFadden, Catherine and Thomas Ashman, Oisin McAuley and Maria Moodie raised in excess of £1,700.

Sticking together: Here is Victoria Bauer who took part in the Liverpool Spring 10k along with her children, Ava, Finn and Will, who took part in the 1k dash. The family took part in the event to raise money for the Association after Victoria’s father was diagnosed with MND.

All the right moves: A charity judo event organised by Lionel Hibbert has raised £550. The event was organised in conjunction with the Pride Judo Club and was held to honour Jacqui Higginson who is living with MND.

A very personal challenge: John Rouse took part in the Derby Ramathon in June and raised more than £1,500 for the MND Association in memory of his uncle, Ray Lucas, who died from MND earlier this year. He said: “The motivation of the generous sponsorship definitely helped get me to the end.”

Mum in a million: It has been a busy time for mum-of-two Kylie Flett who has taken part in six races on behalf of the Association this year, in memory of her father, Ken, who sadly died from MND. Most recently, she took part in the Manchester Colour Run. She explained: “Those of you who know me, know how difficult things were for my father. Together with the golf day, which my family arranges every year, I would like to add as much as I can from my efforts this year.”

Kylie is pictured with her young daughters Jessica, four and Niamh, two, who celebrated her birthday on the day of the colour run.

Turn the page for more of your fundraising stories www.mndassociation.org

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down your way

Fundraising is child’s play: More than £600 was raised at a fun day held at Stables Nursery in Chelmsford on July 15. A cake sale, sweet stall, raffle, face-painting and a sponsored walk were among the activities which helped to raise £630 for the Association. The event was held in support of mum, Josie Edwards who also took part in the Colchester and North East Essex Group Walk to D’Feet on July 19.

Ain’t no mountain high enough: Fields, streams and obstacle courses have proved no match for the combined forces of the Keenan and Godfrey families who have travelled 115km by foot to raise money for the Association. Beck Godfrey took on a 100km London to Cambridge trek in complete silence to highlight the challenges faced by those with MND who cannot speak in support of her father, Stephen Rhodes. She completed the trek in 26 hours 8 minutes, bringing the total raised to £3,015.

Flying high: Reay Newman showed her talents are not just limited to being an Association visitor for the West Kent branch, she also proved at the age of 70 the sky’s the limit when it comes to fundraising, raising £1,650.

Making a dream come true: Ken Crosby was a well-loved singer/guitarist in Caldicot, who died in October 2014 from MND. One of Ken’s lifelong dreams was to record the songs he wrote in the 60s.

Unfortunately, he never got the chance to finish these recordings, however, his friends have rallied around to produce a single, called Beauty Queens in Denim Jeans, which is being released in Ken’s memory to raise money for the Association.

For information, or to buy the single, visit iTunes or Amazon.

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www.mndassociation.org

Coast to coast: A coast to coast cycle ride has raised more than £1,500 for the MND Association. Pictured from left to right are Eddie Patterson, Mark Butler, Gill Gath, Pete Allred, Andy Gath, Paul Wilshaw, Kenny Allen and Kerry Hanley who took part in the event from Whitehaven to Tynemouth. The money was raised in honour of Paul’s brother in law, who is living with MND.

Ryan’s Irish adventure: More than £3,000 has been raised by Ryan Willmott and a team of cyclists who rode 420 miles from Galway to Cork to raise money for the MND Association and the Irish Motor Neurone Disease Association. Ryan sadly lost his Mum Brenda to MND in 2013. His family set up the Brenda Willmott Tribute Fund and so far it has raised over £14,000.

This cycle challenge started on July 15 and took five days.

A brush with MND: Danny Mills, pictured far right, took part in a 10k obstacle race to raise money for the MND Association, after having a brush with the disease. He explained that he recently went through a terrible time not knowing if he had MND and had to have a number of tests. Thankfully, Danny has been given the all clear, but wanted to raise money for those who are not so fortunate.

Danny took part in the event alongside his friends, Mark and Emma Leathert and his girlfriend, Sarah Cliffe. Danny’s company, Infuse Technology has also chosen the MND Association as its Charity of the Year.

All in it together: The Colchester and North East Essex Branch of the Association held its annual Walk to d’feet MND from Frinton to Walton in July. Now in its fifth year, the event attracted 85 walkers, including the mayor. It is expected they will have raised in excess of £2,000.

In memory of David: Olivia Hulme Hankin and a group of her friends raised £723 for the Merseyside branch of the MND Association by taking part in a 5k challenge. Olivia recently lost her husband, David, to MND and said she was very grateful for the support she has received. A further £90 was raised thanks to generous donations during David’s funeral and another £195 has been raised by Olivia’s cousins who has set up a JustGiving page in David’s honour.

Clint goes the extra mile: Clint Spencer, has successfully completed five half marathons and one 12-mile extreme obstacle race, Tough Mudder – all in just four weeks. Clint was running for the Association in honour of his wife’s aunt, Lesley Silvester, who was diagnosed with MND last June.

He said: “I wanted to do something different to raise awareness about this disease, as well as raise money for Association, which has been a great help to Lesley since her diagnosis.” Clint has since smashed his original target of £2,000.

A family affair: It has been a busy time for Sophie Moy and her partner, James Viner, who have taken part in the the Winchester 10k, Eastleigh 10k, Oxfordshire, in memory of her father Andrew, who died from MND in 2012. Sophie said: “The first event at Winchester went extremely well and we had some great shout outs for Association from the crowd while we were running the race! Such great motivation.” The couple has raised £826 and in September took part in the Windsor Half Marathon whilst Sophie’s sister Hayley Williams and her husband, Rob, took part in the Bristol Half Marathon.

www.mndassociation.org

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your voice If you have something you would like to share with other members of the MND family, we would love to hear from you.

Letters, which must include your full address, can be sent to Your Voice, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email at editor@mndassociation.org Please note that letters may be edited. If your letter is printed on these pages we will send you an MND Association coin keyring.

diary dates Great South Run 25 October Regional conference – York 25 October Wiggle ‘Devil’s Punch’ Cycling, South Downs, Brighton November 1 Back 2 The Trenches November 15 Glow in the Park 5k Various dates Bakeit!

All year round Walk to D’feet MND All year round Santa 5k/10k runLondon, Victoria Park 6 December Regional conference – Bristol 23 January 2016

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www.mndassociation.org

Remembering my mother My mother died of motor neurone disease in January 2005 and she lost her speech.

In the beginning, it got worse as she became more tired, so she would discuss important matters over breakfast. Many people thought she had suffered a stroke at this time.

Although I did not know the reason for her loss of speech, I thought this to be incorrect as she had not lost the ability to construct sentences.

Very infrequently, but every so often, without warning she would say two or three words or even a sentence which were quite intelligible.

My wife could lip read my mother, but I could not, but because we are creatures of

habit I was able to think what she would say in certain situations and what she wanted to do. This ability was useful.

She would not use a keyboard, but instead chose to write reams on a reporter’s notebook as a way of communication.

It became very difficult for us because to save her writing, she would refer back several pages to a word, or even a sentence in a paragraph she had written to someone else and expect one to put in the context of that which she was writing to you.

She suffered for some four years and died just short of her 91st birthday.

Peter Wright, Ipswich

Follow us @mndassoc Talking about #MND on Twitter Daniel Brocklebank @Dan_Brocklebank – Sep 12 My first brew of the day, with my #SelfTea4MND. Can u do the same & donate to @ mndassoc? (Text ‘TMND55 £5’ to 70070) Z @zzzedkat – Sep 21 My sister is about to swim the Solent from Portsmouth to the Isle of Wight to raise money for the MND association. She’s amaaaazing!

MND Association @mndassoc – Sep 18 Ruth, living with #MND & daughter of former @EnglandRugby captain William Wakefield surprised with a #RWC2015 ticket! http://bit.ly/1KqGMYa MND Association @mndassoc – Sep 13 Well that’s it for another year @Great_Run. A huge THANK YOU to our amazing runners & volunteers #MND #GNR2015 26Miles 4mnd @26miles4mnd – Aug 29 Thank you all the new followers of @26miles4mnd and thanks for all the retweets and faves we’ve had in the last 12 hours! Feel #humble #MND Tom Syndicate @ProSyndicate – Aug 11 Ohh check it out! I got nominated by @mndassoc <3 http://www.mndassociation. org/news-and-events/latest-news/tom-syndicate-cassell-nominated

A letter from the editor I feel very proud and privileged to introduce myself to you all as the new editor of Thumb Print.

In putting together this edition of the magazine, which is my second as editor, I have had the great honour of speaking to a large number of you who have taken the time to share your stories with me.

I have learnt a great deal already from people who are living with MND and from all of the amazing volunteers, carers, researchers, campaigners and fundraisers

who work so passionately on behalf of the Association.

Thumb Print is your magazine and it is important that it continues to tell your stories and reflect your needs.

If you have any thoughts about the magazine, whether there is a feature you would like to see or an aspect of the magazine which you feel doesn’t work, I would be delighted to hear from you.

I can be contacted via email at editor@mndassociation.org Clare Brennan

Follow the signposts in your mind Well-trodden and familiar routes don’t need signposts, do they? I’m not so sure now. Let me explain.

I enjoy searching out new places to take my electric wheelchair, and I like the ones I’m familiar with too, it depends on my mood.

I love it when I find a snicket between buildings that I’ve not used before, and if I have time in my busy schedule, I’ll dodge down it, trying to keep a map in my head to work out where it’ll come out.

Sometimes it gets narrow, but my chair is powerful and will bulldoze through most things. Actually, the worst hazard is mud. My chair may be powerful, but if the wheels are slipping there’s nothing I can do. But I digress; this isn’t about exploring.

This is about familiar paths.

The pleasure of familiar paths is that you don’t have to think. The wheelchair goes on autopilot and I just sit back and enjoy the ride. Parks are a favourite: snowdrops, then daffodils, dappled sunshine in the heat of summer, muted autumn colours and frozen toes - the seasons bring their magic to a familiar route. But sadly not all familiar routes have this magic, worse, they may have a bad magic. The path goes past the house of a friend who’s died, for example. If you’re not prepared for it, sometimes this can jump out of the shadows, taking you on a mental path that may be horrid.

We all have these pathways in our heads. Some little trigger sends you on a downward spiral that is all too familiar. Maybe someone says something thoughtless. Maybe there’s no particular

trigger, but your brain knows how to get you on a dark path all on its own. Maybe an argument, maybe an unpaid bill, maybe a destructive habit.

Maybe uncertainty about the future. Maybe regret and remorse about the past.

I’m trying to adopt the simple strategy of putting a mental signpost there, so I have a choice before I get locked on a bad track. It may indicate a mere warning. It may be more detailed, “You’ve been this way before and you really didn’t like it.” Maybe it’s, “This path reminds me of an issue that has been resolved, but can still hurt.” Sometimes time of day is important. We have a rule in our household, “No discussing emotive subjects after 10 pm.”

Maybe more important than the no entry signs are the ones where you know you have to face up to a particular mental pathway, but you also know you need strength and maybe support to cope with it. One of my favourite quotes that helps on the MND path, when the spectre of terminal illness descends like a black blanket, is, “When I walk through the valley of the shadow of death, I will fear no evil, for you are with me.”

Whether you believe in it or not, there are some cracking quotes in the Bible.

Personally, I gain great strength and resolve from it, some brilliant signposts in my head that don’t erase the dark valley from my mental map, but bring some sunshine to it.

Try putting up some signposts. I’ve not regretted it.

Simon Asprey, via email

about us: 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 directing to other services and agencies.

Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

03457 626262 mndconnect@mndassociation.org

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

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

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