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ISSUE 35, 2012 | WWW.MSATRUST.ORG.UK

RESEARCH ADVANCES offer new hope for future MSA drug developments

MAKESMSA NATIONAL MEDIA DEBUT!

TOP TIPS... TO HELP YOU GET A GOOD NIGHT’S SLEEP Follow us on Twitter & Facebook and help raise awareness of MSA. See our website, www.msatrust.org.uk CONTENTS

PATRONS: Sir Roger Bannister CBE FRCP Multiple System Atrophy Trust Professor CJ Mathias DPhil DSc FRCP Information, support, education and research. Free services for people with MSA, carers, family, health and social care TRUSTEES: professionals. Our vision is a world free of MSA. Michael Evans (Chairman) Valentine Fleming Professor Clare Fowler CBE FRCP UK RARE DISEASE PLAN 03 Ms Darcy Hare Getting closer to launch day Alexander Loehnis Chris Marsden (Honorary Treasurer) NEWS ROUND-UP 04 Hugh Matheson Geoffrey Murray Hon Mrs Clare Powell DIRECTORY OF MSA CLINICS 05 Eileen Lady Strathnaver OBE Helping you to find your nearest specialist clinic Karen Walker DRUG DEVELOPMENTS IN MSA 06 EXECUTIVE DIRECTOR A review of recent advances AND MSA NEWS EDITOR: Nickie Roberts RESEARCH UPDATE 08 News from Trust-funded projects ALL CORRESPONDENCE AND ENQUIRIES TO: RECIPES 09 Multiple System Atrophy Trust Easy to digest meals - Beef casserole Southbank House, Black Prince Road London, SE1 7SJ FUNDRAISING 10 Tel: 020 7940 4666 Members in action! www.msatrust.org.uk SUPPORT GROUP DIRECTORY 12 The Trust is financed entirely by Dates & venues; Behind the scenes at the Kent group voluntary donations. Registered Charity Number 1137652. CARERS CORNER 14 Company Number 7302036. Sleep - it’s the quality that matters!

IN MEMORY 17

MEMBERSHIP AT SEPTEMBER 2012 RAISING THE PROFILE OF MSA 18 Current MSA members 949 Spreading the word to improve understanding Carers, relatives & friends 1,309 Healthcare professionals 1,644 MSA SHOP 20 Total 3,902 Trust Christmas cards New MSA Members since 1 June 2012 67 UK RARE DISEASE PLAN

The Trust is a member of the national alliance for people affected by rare diseases, Rare Disease UK (RDUK), which has recently been in discussions with the Department of Health about progress in developing the final UK rare disease plan.

round 350 responses were RDUK will also be launching a services they need, when they Asubmitted to a public con- report on the value of care co- need them. They also play an sultation, and the UK’s four ordinators to patients and the important role in providing in- health departments are now health service, and need your formation and support to pa- currently working on their sum- help. tients and families about their mary of responses. These will condition. be publicly available towards REPORT ON CARE RDUK are looking to speak the end of the year. It is hoped COORDINATORS to people about their experi- that the rare disease plan will This report will investigate ences in this area. This includes be launched early next year, the benefits care coordinators patients or their carers who although given its broad scope bring both to patients and to currently benefit from a care and the need to get agreement the NHS, and will help RDUK coordinator, patients who pre- from four different health de- in its work to ensure all pa- viously had a care coordinator partments, this may be subject tients affected by multi-system but the post was discontinued to delay. RDUK are primed to rare diseases have a named due to lack of funding, people campaign for the launch of the care coordinator. RDUK has who work as care coordinators plan should this not happen in been campaigning for this to and clinicians who can speak 2012. be part of the forthcoming na- about the value of care coor- As well as continuing to in- tional plan for rare diseases. dinators. fluence NHS policy decisions, The exact role that a care If you are willing to speak to RDUK’s plans for 2013 include coordinator plays in a person’s RDUK about this topic, have contributing to the knowledge care depends on the nature of any information that might be base around rare diseases. As the condition. It can also de- useful to this work or would part of this, it will be conduct- pend on whether the role is like further information, please ing a review into how centres provided by the NHS or by contact Samantha Reeve, Pol- of excellence for rare diseases patient organisations. Care icy Research Officer atsaman - would work in the context of coordinators generally ensure [email protected] or by the UK’s health systems. that a patient can access the calling her on 020 7704 3141.

www.msatrust.org.uk | ISSUE 35, 2012 03 NEWS ROUND-UP

GIFT AID MSA AWARENESS DAY

ift Aid is an extremely important source his year’s World MSA Awareness Day took Gof income for the Trust. If you have ever Tplace on Wednesday, 3 October. made a donation to us and you are a UK tax- Across the world people affected by MSA lit payer, by completing a short Gift Aid form we candles at 8pm for one hour, creating a vir- can claim an additional 25p in every £1 you tual 24-hour wave of light across the globe as it have donated. You only need to fill out the form moved from time zone to time zone. once, meaning this is an easy way for your do- Many people also walked one mile for MSA, nation to go that little bit further and make with the aim that everyone affected by multiple even more of a difference. A copy of our Gift system atrophy collectively walked around the Aid form is available on our website or call the earth (ie, 24,901 miles at the equator). Trust’s office and we’ll pop a copy of the form in the post to you. Last year, we claimed an additional £12,000 in Gift Aid, enabling us to NEW HEAD OF provide further support to all those affected by MSA. FUNDRAISING

e’re delighted A CALL TO ALL HEALTH Wto report that we have successfully AND SOCIAL CARE appointed into our newly created Head of PROFESSIONALS Fundraising position, established to help he Trust is conducting its first health and secure much needed Tsocial care professionals’ survey to provide funds for our support a greater understanding of how the Trust could services and research be supporting professionals treating patients projects. with MSA. Katie Heyward joined us in August, and The survey should take around ten minutes brings with her extensive experience. She says, to complete, and can be accessed through the “There is no doubt this is an exciting time for Healthcare Professionals section of the Trust’s the Trust and I’m looking forward to securing website: www.msatrust.org.uk. essential funds to enable the charity to success- It’s important to gather responses from fully carry out its work, now and in the fu- health and social care professionals who have ture.” not yet encountered MSA, so please encourage Katie can be contacted at the Trust’s office work colleagues and contacts to complete the on 020 7940 4666 or by emailing her at katie. survey too. [email protected]. Findings will be available on the Trust’s web- site later in the year.

04 ISSUE 35, 2012 | www.msatrust.org.uk DIRECTORY OF MSA CLINICS

lthough it is usually Dr Alex Gerhard Dr Huw Morris Athe case in the UK for Salford Royal NHS Foundation Royal Gwent Hospital people with MSA to be seen Trust Newport, Gwent, NP20 4UB in general neurology clinics, Stott Lane, Salford, M6 8HD 01633 234829 a specialised MSA clinic can 0161 206 4100 provide more in-depth care Dr James Rowe including diagnosis, symptom Dr Marios Hadjivassiliou Disorders of Movement and management and on-going Royal Hallamshire Hospital Cognition Clinic support for the person with Glossop Road Cambridge University MSA as well as their families. Sheffield, S10 2JF Department of Clinical 0114 271 1900 Neurosciences This directory has been Herchel-Smith Building compiled to help you find Professor Henry Houlden Forvie Site, Robinson Way an MSA clinic if you would National Hospital for Neurology Cambridge, CB2 0SZ like your GP to refer you. If and Neurosurgery 01223 760696 you have any queries, please Queen Square contact Lyn Shaw at the London, WC1N 3BG Dr Anirban (Romi) Saha Trust on 020 7940 4666 or 020 7837 3611 Hove Poly Clinic email [email protected]. Nevill Avenue Dr Michelle Hu Hove, East Sussex, BN3 7HY John Radcliffe Hospital 01273 696955 (Secretary Sharon Dr Thomas Bak Headley Way, Oxford, OX3 9DU Elder, Royal Sussex County 7 George Square, Edinburgh 01865 741166 Hospital) EH8 9JZ 0131 650 3441 Professor Nigel Leigh Professor Kevin Talbot Hurstwood Park Neurological Nuffield Department of Clinical Professor David Burn Centre Neurosciences Department of Neurology Lewes Road, Haywards Heath West Wing Queen Victoria Road West Sussex, RH16 4EX John Radcliffe Hospital Royal Victoria Infirmary 01273 696955 (Sharon Elder – Oxford, OX3 9DU Newcastle Upon Tyne, NE1 4LP same secretary as for Dr Saha) 01865 231893 0191 282 3697 Fiona Murphy PNS Professor Zcyicek Dr Jonathan Frankel and Dr Mount Gould Hospital Derriford Hospital Alice Manson Mount Gould, Plymouth Derriford Road, Crownhill Southampton General Hospital Devon, PL4 7QD Plymouth, Devon , PL6 8DH (and Isle of Wight) 01752 268011 01752 202082 Tremona Road Southampton, SO16 6YD 023 8077 7222

www.msatrust.org.uk | ISSUE 35, 2012 05 THE PRESENT & FUTURE OF DRUG DEVELOPMENT IN MSA

Recent advances have generated new hope for future drug development in MSA. Groups of researchers in Europe and the US have developed rating scales that can be used to track progression of MSA, and there are now a number of new animal models that can be used as a test bed for new therapies. There has been a great deal of activity in the development of treatments for MSA. Dr Wassilios Meissner reviews recent progress.

lthough there are lots of Atherapies that can help patients with MSA, there are currently no treatments that can stop the progression of the disease. The development of these “disease-modifying” therapies is a key priority for research. In order to evaluate the effectiveness of any new therapy, a comparison with a dummy treatment (placebo) needs to be made. Several placebo- controlled studies assessing the efficacy of growth hormone, negative results, these studies in a treatment trial — which is Riluzole and Minocycline, are very encouraging because remarkable for a rare disorder have not shown benefit for they show that as many as 400 — underlining the feasibility of MSA patients. Despite the MSA patients can be enrolled conducting large clinical trials

06 ISSUE 35, 2012 | www.msatrust.org.uk in the future. marrow (mesenchymal) stem by the body’s own immune Brain inflammation in re- cells, an established and effec- system following vaccination. sponse to the disease process tive treatment for many hae- Another promising line of re- seems to be an important part matological disorders, has been search is growth factor treat- of MSA. In the Minocycline tested in a small clinical pilot ment in which chemicals are trial, there was a suppression study in MSA patients. Symp- administered which help to of the activation of cells that tom severity remained un- support and promote healthy are crucial in the development changed in patients who were nerve cells. of brain inflammation (micro- treated with stem cells, while It is very encouraging that glia). Minocycline or other re- those receiving placebo showed so many researchers are now lated compounds that reduce worsening over time. However, working on potential new microglial activation, may be the groups of patients who re- treatments for MSA. Recent effective in earlier disease stag- ceived stem cells and placebo progress has allowed substan- es where microglial activation were not well matched, which tial improvement in the de- more clearly contributes to makes it difficult to be certain velopment of new ideas for disease progression. about the treatment effect. drugs, the clinical environment The growth hormone trial The positive results of a bet- and methods in clinical trials showed a clear but not sig- ter-designed study were pub- paving the way to a growing nificant difference in progres- lished in April 2012. Similar number of treatment trials to sion of symptoms between to the first study, the effect of come. This progress has gen- the treatment group and pla- bone marrow stem cells were erated new hope that we will cebo group. It may be that the only tested in a small number find treatments that will slow study was underpowered – that of patients. A large, interna- down or stop disease progres- is a larger number of patients tional multicentre trial will sion in MSA. MSA would have shown a significant probably be needed before we difference between active and can clearly know whether stem Reproduced with the permis- dummy treatment. With this cells are an effective treatment sion of Dr Wassilios Meissner, in mind, a new larger trial for MSA. Department of Neurology at may be successful. At the mo- Abnormal deposits of a brain the French Reference Centre ment there is no funding for a protein called alpha-synuclein for MSA, University Hospi- growth hormone study, but it are a hallmark feature of MSA. tal Bordeaux and Institute of may be that a collaboration In animal models, Rifampicin, Neurodegenerative Diseases, between drug companies, char- a drug that has been used for University Bordeaux, France. ities and private donors could decades as a treatment for tu- be effective in developing this berculosis, inhibits the forma- approach. tion of alpha-synuclein and Rasagiline, a licensed treat- slows disease progression. A ment for Parkinson’s disease, clinical trial in the US has en- and Fluoxetine, an antidepres- rolled 100 MSA patients into sant, both reduce neuronal a Rifampicin trial. These pa- loss in animal models of MSA, tients are now being followed The Trust has published a Rasagiline and Fluoxetine have for one year. research strategy which recently been assessed in two There are a number of other provides details of its large clinical trials. The Rasa- experimental therapies in de- research priorities. Copies galine study, which involved a velopment which will probably are available on our number of UK patients, has take several years to reach website, www.msatrust. unfortunately not shown a clinical trials. These include org.uk, or by calling the benefit for MSA patients. vaccine treatments in which office on 020 7940 4666. Transplantation of bone synuclein deposits are cleared

www.msatrust.org.uk | ISSUE 35, 2012 07 TRUST FUNDED RESEARCH

r Christopher Kobylecki at the University Back in London, Dr Janice Holton at the Queen Dof Manchester is undertaking a study com- Square Brain Bank is applying state-of-the-art paring the cognitive problems in patients with morphological and genetic techniques to the MSA and Parkinson’s disease to those of volun- Bank’s collection of well documented MSA cas- teers without either conditions, as well as per- es. Her team is testing whether or not neuro- forming imaging studies to identify which areas inflammation is an early feature of the disease, of the brain might be responsible for these prob- and will be looking to see if it is possible to lems. He hopes the team’s research will lead to influence the neuro-inflammatory response as a a better understanding of cognitive symptoms treatment for MSA. in people with MSA and related conditions, and that this will improve management and treat- The Trust will be announcing a new grant ment. round early in the New Year. MSA

MAKING A REGULAR DONATION

If you would like to make a regular donation to support our work, please complete the form below and send to the Trust’s office. If you are a UK taxpayer we can increase the value of your donation by 25% by reclaiming the tax as Gift Aid. Regardless of size, all donations help us to maintain and improve our services and fund research.

Name:......

Address:......

...... Postcode:......

Signed:...... Date:......

□ I would like to make a regular donation. Please send me a form. □ I would like to make a donation of £...... and enclose a cheque. □ I am a UK taxpayer and wish all gifts of money that I have made in the past six years and all future gifts of money that I make from the date of this declaration, until I notify you otherwise, to be treated as Gift Aid donations.

Please fill in this form and return it to us enclosing a cheque made payable to Multiple System Atrophy Trust, and send to: MSA Trust, Southbank House, Black Prince Road, London SE1 7SJ.

08 ISSUE 35, 2012 | www.msatrust.org.uk Easy to digest MEALS

The second in our series of recipes comes to us from Judith Moir from Aberdeen

EASY BEEF CASSEROLE: Alternatively, gravy granules could also be used Serves 2 at this stage. CAN EASILY BE DOUBLED TO MAKE A You can now chop the carrots before sliding the DELICIOUS FAMILY MEAL. meat and carrots back into your casserole dish. Taste it and check for seasoning. 200g beef – stewing 2 large carrots steak or beef shin Serve with mashed potato and a green vegeta- 1 onion, chopped 1 clove garlic, crushed ble. You can buy excellent frozen mashed po- 1 tbsp cornflour Chicken stock cube or similar tato pieces which just need to be microwaved if, like me, you don’t like standing at the sink Preheat oven to 150°C (275°F, Gas Mark 2). peeling potatoes!

Place the beef in an ovenproof dish and add This dish works equally well if made with pieces peeled, whole carrots and the onion and garlic. of chicken or lamb. MSA Top with water until just covered.

Cover the top of the dish tightly with foil or the lid of the casserole dish, and place in a low oven for four hours. After a few hours your house will People with MSA will have different needs, be filled with an appetising aroma! and not all recipes featured in MSA News will be suitable for everybody, so please Strain the water (which your oven has now first check with your speech therapist transformed into stock) into a pan. If there is and dietician. If you would like general too much liquid, boil to reduce it. Mix cornflour information on food, diet or swallowing, with a little water and whisk gradually into the please contact the Trust’s office on 020 ‘gravy’ until it begins to thicken. Add a stock 7940 4666. cube or similar and salt and pepper to taste.

www.msatrust.org.uk | ISSUE 35, 2012 09 FUNDRAISING MEMBERS IN ACTION

Tony Stephens memorial golf day On the 23rd May, 90 golfers descended on Taunton and Pick- eridge Golf Club to take part in the Tony Stephens Memorial Golf Day. Tony, who was from Taunton, was a former Chief Inspector in the Avon and Somerset Constabulary. Friends and family took part in a three-ball Bowmaker competition and, Golf Tournament along with an auction, raised over £4,000 for the Trust.

Nine year old Max’s mini triathlon Max Wilson from Liverpool took part in the Sefton Triathlon in aid of his granddad, Findlay Wilson, who has MSA. Max’s fantastic feat involved him swimming 150 metres, cycling 5km and running 2.5 km. Thanks to his efforts, Max raised £225 for the Trust. Max’s Mini Triathlon

100km around moonlit London This June an intrepid team of cyclists took part in the 100km moonlit London Nightrider, passing the City’s iconic landmarks such as Tower Bridge, the Houses of Parliament and London Zoo. Our magnificent eight were made up of: Jim Bratt, Kath- ryn Gilbert, Kevin DeJesus, Robert Croydon and the Trust’s Night time London Cycle Ride own Information & Support Manager, Neil Hunter, Trustee Dar- cy Hare, her brother, Lewis and the Trust’s Executive Director, Nickie Roberts. The team raised over £2,850.

Bridget and Norman’s wedding Norfolk-based couple Bridget Hallett and Norman Kingston tied the knot in the coffee shop of Banham Zoo. Instead of receiving gifts, the couple kindly asked their guests to make donations to the Trust. Norman has MSA, but for many years ran his own garage and still retains his enthusiasm for cars. The couple first met when Bridget was a teenager but lost touch. Then, 17 years Bridget & Norman’s Wedding ago, Bridget visited Norman’s garage…and the rest is history! The wedding saw a total of over £550 raised for the Trust.

10 ISSUE 35, 2012 | www.msatrust.org.uk Aggmore to Bruges The Trust’s Honorary Treasurer, Chris Marsden and several col- leagues from his company Aggmore, cycled from London to Bru- ges to fundraise for the Trust. Starting out from Purley Leisure Centre in South East London, day one saw the team cycle 85 miles to Dover to catch the ferry to Calais. On day two they London to Bruges Cycle Ride were back in the saddle to cycle a further 77 miles from Calais to Bruges. Although the roads were mainly flat, a strong headwind confronted the team throughout the entire day. However, when they finally arrived in Bruges they were greeted by the lovely sight of many bottles of champagne! In total the team raised over £10,500.

Walking for Moira Jackie Satchell, from Eastbourne, and several members of her family took part in a 10 mile walk organised by Jackie in memory of her mum, Moira. The walk began at Polegate Railway Station and went through areas that Jackie’s mother knew extremely well, before finishing at the café at Holywell. Thanks to their Eastbourne Walk fundraising efforts, a total of £1,595 was raised for the Trust.

The West Highland Way David McIntyre and his son Steven, both from West Myreton, walked the West Highland Way to raise funds for the Trust. Their cousin Sam Crawford has MSA, but this hasn’t prevented her from spearheading a fantastic ongoing fundraising campaign among her relations and friends. Thanks to David and Steven’s The West Highland Way efforts, a total of £380 was raised.

School Fundraising Year six pupils from Trull School, Taunton in Somerset raised £297 for the Trust by taking part in a £4 challenge. Each pupil was lent £4 and asked to make as much money as possible from this amount; some sold plants and hair accessories, while others scored goals or charged pupils to throw water at their teachers in the stocks! The children of Christ the King Catholic Primary School in Llanishen, Cardiff held a non-uniform day to raise a total of £126 for the Trust.

If you’d like more information about how to set up your own fundraising event or to take part in one of the Trust’s challenges, please contact Mike Coffey at [email protected] or call him on 020 7940 4666.

www.msatrust.org.uk | ISSUE 35, 2012 11 MSA SUPPORT GROUP DIRECTORY Local support groups are a great way to meet other people who understand life with MSA. Please contact the group leader or speak to Lyn Shaw at the Trust’s office on 020 7940 4666 for more details.

REGION GROUP LEADER / EMAIL PHONE NEXT MEETING VENUE CO-ORDINATORS IN 2012

Cornwall Jane Handy moonbeams@ymail. 01726 74792 TBC TBC Jan Pearce com 01726 861361

Cumbria Trust Office office@msatrust. 01434 381 932 Mon, 5th Nov Eden Valley Hospice, Durdar Road, org.uk 1.30 – 3.30pm Carlisle, CA2 4SD

Derbyshire Karen White karen@karenwhite7. 01283 735 TBC Doveside Social Club, Hatton, Kulwant Sehmbi wanadoo.co.uk 847 DE65 5DT

Devon Dennis Westrip denniswestrip@ 01271 378 273 Fri, 2nd Nov Baptist Church, High Street, btinternet.com 2.00 – 4.00pm Cullompton, Devon, EX15 1AA

East Elizabeth holmepierrepont@ 01159 333 083 Wed, 10th Oct Holme Pierrepont Hall, Holme Midlands Brackenbury aol.com 2.00 - 4.00pm Pierrepont, NG12 2LD

Essex Lady Laurelie Baylaurie331@ 01206 210 410 Mon, 29th Oct Great Tey Village Hall, Great Tey, Laurie & Sir Bay btinternet.com 12.30 – 4.00pm Essex, CO6 1JQ Laurie

Fife Kim Carr office@msatrust. 020 7940 TBC Burnside Hall, Balmullo, KY16 0AW org.uk 4666

Inverurie Gill Campbell office@msatrust. 020 7940 TBC St Mary’s Church, Inverurie org.uk 4666 AB51 3NW

Kent Linda Nicolaides marlin.michris@ 020 7940 Thur, 1st Nov Rm B028, University of Greenwich virgin.net 4666 2.00 - 4.00pm ME4 4TB

Lincolnshire Katie Rigg office@msatrust. 020 7940 Thur, 11th Oct Alvingham Village Hall, Yarburgh org.uk 4666 1.30 - 3.30pm Road, LN11 0QG

London Penny Stokes pennystokes@ 020 7940 Mon, 22nd Oct Southgate Hockey Centre, Snakes (North) hotmail.co.uk 4666 10.45 am for Lane, Oakwood, London EN4 0PS 11.00am start

Northern Rosemary [email protected] 028 377 TBC TBC Ireland Arbuthnott 88386

Northum- Aileen Tuff aileenlee6@hotmail. 020 7940 Wed, 24th Oct Blyth Library, Bridge Street, Blyth, berland com 4666 1.30 - 3.30pm NE24 2DJ

Oxfordshire Sue Parnell [email protected] 020 7940 TBC Girl Guide Hall, Southern Road, 4666 Thame OX9 2EE

Shropshire Brian Hopkins office@msatrust. 020 7940 Mon, 3rd Dec The Lantern, Meadow Farm Drive, org.uk 4666 1.30 – 3.30pm Shrewsbury, SY1 4NG

Southern George Hunter george@ 00353 872 TBC TBC Ireland georgehunter.biz 525252

Southport Jo Hans [email protected] 01253 821 693 Thur, 29th Nov St James Church Hall, Lulworth 2.00 - 4.00pm Road, Birkdale, PR8 2BQ

Surrey Peter Turvey peterturvey@ 01483 827 Thur, 29th Nov Shalford Village Hall, Kings Road, waitrose.com 395 1.00 for 2pm start Shalford, Guildford, GU4 8JU

Warrington Linda Moss linda.moss@ 0151 2826125 Fri, 30th Nov Fairfield & Howley Neighbourhood warrington-pct.nhs. 2.00 – 4.00pm Project, Fairfield Street uk WWA1 3AJ

West Vanisha Rana vanisha_ 020 7940 TBC Moxley People’s Centre Charity, 3 Midlands chauhan1985@ 4666 Queen St, WS10 8TA hotmail.com

12 ISSUE 35, 2012 | www.msatrust.org.uk West Sussex Gwen Yates [email protected] 020 7940 TBC Field Place, The Boulevard, Amanda Woodhall amandashort82@ 4666 Worthing, BN13 1NP hotmail.com

Yorkshire Katie Rigg office@msatrust. 020 7940 Wed, 31st Oct Etton Village Hall, (East) org.uk 4666 1.30 - 3.30pm 37 Main Street, Beverley, HU17 7PG

Yorkshire Katie Rigg office@msatrust. 020 7940 Tue, 9th Oct Oswaldkirk Community Hall (North) org.uk 4666 1.30 - 3.30pm North Yorkshire

Yorkshire Katie Rigg office@msatrust. 020 7940 Wed, 21st Nov Community Centre, Leeds Road, (West) org.uk 4666 1.30 - 3.30pm Howden Clough, Birstall WF17 0HY

Groups shown as ‘TBC’ are still running but the date of the next meeting has not been confirmed. BEHIND the SCENES Working tirelessly behind the scenes of all the Trust’s support groups are a network of volunteer leaders who organise meetings across the UK. Our group leader in Kent, Linda Nicolaides, describes her meetings:

he organisation of our sup- ence of Laura Daniels, speech and chatting before the MSA Tport group meeting starts therapist, Dr David Oliver, specialist takes the floor. A two months before the event. consultant in palliative care at brief overview of their specific A date is chosen and a room the Wisdom Hospice in Roch- area is presented, followed by a is booked on or close to that ester and, of course, Samantha question and answer session. date, and I then let Lyn Shaw Pavey, one of the Trust’s trea- It’s amazing how quickly at the Trust’s office know and sured specialist MSA nurses. the time passes swapping tips she prepares paperwork and With this done I can relax un- on different medication (to be informs Trust members. We til the day of the meeting. verified by their own doctors of have a core group which is The day of the meeting is course) or how specific symp- growing with a new member always one to look forward toms are managed, until we or two, plus their carer(s), ar- to; meeting friends, new and have to end the meeting. Once riving each meeting. old, to see how they are meet- all the members have started Once this is done, I invite ing the challenges that life has their journey, back to the meet- a local medical person who is thrown at them since the pre- ing room for....the washing up! working with MSA on a daily vious meeting. Folk arrive to And thoughts of an afternoon basis to come along to share the welcome of a traditional spent sharing ways to combat their experiences with the cup of tea or coffee, or other our lives living with MSA. MSA group. In the past we have refreshments. We spend a little been honoured with the pres- time renewing acquaintances

www.msatrust.org.uk | ISSUE 35, 2012 13 CARERS CORNER SLEEPING WELL

Sleep is something that’s supposed to come naturally to us, yet it can still be difficult to achieve. There are many reasons why people don’t find it easy to get a good night’s sleep and caring for somebody can be one, so it’s important to help yourself get a more restful night. The second part in our Carers Corner series looks at how to get a good night’s sleep.

14 ISSUE 35, 2012 | www.msatrust.org.uk HOW MUCH SLEEP DO • Try to go to bed and get up fer. It can turn into a vicious I NEED? at the same times each day, cycle where you get even more Different people need differ- even at the weekend. stressed about the fact that ent amounts of sleep depend- • Don’t nap during the day you can’t sleep. ing on what is happening in (unless it’s practically im- • If you’re kept awake be- their lives. It’s the quality of possible for you to get a full cause you’re worried about sleep you’re getting that mat- night’s sleep – then it’s a the person you’re caring ters most. Adults and older good idea). for, then it might be a good adults generally need about • Make time to unwind before idea to invest in a monitor eight hours sleep. A few nights you go to bed. Have a warm so you will know if there’s a of poor sleep isn’t harmful, bath or read a few chapters problem. but over longer periods of time of your book. • Keep a notepad by your bed this can have an impact on you and write down your worries physically and mentally, re- CARING THROUGH or the tasks you need to do ducing energy, concentration, THE NIGHT the next day. This will help mood and your general ability Getting a good night’s sleep you to put them out of your to function. will be out of your control if mind until the morning. Getting a good night’s sleep you’re caring for someone who • If you’re feeling anxious, get will sometimes be out of your needs medication or other help up and do something else control, but there are ways of through the night. If this is the for 20 minutes like reading improving your sleep environ- case, try and compensate with a book or watching TV. Try ment that will help you to re- a nap during the day. to get back to sleep later. lax and feel more comfortable. If, however, you’re kept awake because you’re wor- EAT AND DRINK WELL MAKE YOUR ROOM ried about the person you’re What you choose to eat and SLEEP FRIENDLY caring for, then it might be a drink, and when, affects your Making small adjustments to good idea to invest in equip- energy levels. Your sleep will your surroundings will help ment that will let you know if suffer if you eat and drink the to improve the quality of your there’s a problem (eg, a moni- wrong things before you go to sleep. tor). Your local council may of- bed. • Use blackout blinds to make fer telecare and telehealthcare • Don’t drink too much caf- your bedroom dark and take packages specifically designed feine through the day or in away all distractions such as to monitor disabled and older the evening. TVs and/or computers. people, and give family mem- • Cut down on alcohol and • If you’ve had your mattress bers peace of mind. try not to drink it before for a long time, it might be It might also be helpful bed. You might feel like it worth investing in a new to talk to the GP or special- helps you to relax, but it one to help make your bed ist of the person you’re caring could end up waking you up more comfortable. for to see if anything can be in the middle of the night. • Adjust the temperature in done about their sleeping hab- • Eating sugary foods or a your room so you don’t feel its which could help you both. heavy meal just before bed too hot or too cold. You can also call the Trust’s will make it harder to sleep, office on 020 7940 4666. so try having your meal ear- GET INTO A ROUTINE lier in the day. Establishing a routine and giv- LOOK AFTER • Feeling hungry can also stop ing the person you’re caring YOURSELF you getting to sleep at night, for clear cues that it is time MANAGE YOUR STRESS so have a light snack before to rest, will help both of you If you’re stressed then sleep you go to bed such as cereal sleep better. is often the first thing to suf- and milk or crackers.

www.msatrust.org.uk | ISSUE 35, 2012 15 MOVE MORE If you’re active in the day then you’ll CARERS’ TIPS FOR sleep better at night. Exercise releases chemicals in your body which promote STEPS TO BETTER more restful sleep. • Aim for 30 minutes of physical ac- SLEEP tivity on five days of the week, or as much as you can manage. • It might be hard at first, but once you get into an exercise routine you’ll feel fitter and less tired throughout I have blackout blinds in my bedroom, and the day. instead of turning the bright bedroom light on • Try not to exercise too close to bed when I get up during the night to look after time, as it can leave you feeling more Dad I light a candle. It’s less disruptive for awake. both of us, and means I can get to sleep again quickly afterwards. MORE INFORMATION AND RESOURCES

The Trust’s specialist nurses can be contacted at [email protected]. A regular bedtime routine helps me sleep. I get up and go to bed at the same time every day, THE CAREWELL HANDBOOK AND even if the opportunity of a lie in ever happens. WEBSITE Carewell is a partnership between Bupa, Carers UK (of which the Trust is an affiliate member) and nutritional body, MEND. The handbook and web- I’m often kept awake trying to think of all the site have been produced to help carers things I have to do the next day. Keeping a and the people they care for. The hand- notepad by the bed allows me to write things book can be ordered by calling 0800 down as I think of them, and then forget them 011 4777. The website can be accessed as I go to sleep. Everything always seems much by visiting www.carewelluk.org. more worrying in the middle of the night and often the things on the list are quite pointless DEEP SLEEP CD when I read them in the morning, but it still A copy of the Deep Sleep CD, designed gets them out of my head for the rest of the to help ease you into a natural sleep by night! using a range of relaxation techniques, is provided with copies of The Carewell Handbook.

This information has been reproduced with kind permission of Carewell.

More tips can be found by visiting www.carewelluk.org.

16 ISSUE 35, 2012 | www.msatrust.org.uk Memorial WALL IN MEMORY Alan Price Margaret Beake Jane Pardoe Kevin Nutt We are pleased to launch our Janet Robertson from Stourport Memorial Wall set up on our Martin Olive website: www.msatrust.org.uk Alan Edwards on Severn, to provide our members with Pauline Page an opportunity to remember Owen McCarthy Worcestershire, their loved ones in a very Stephen Pardoe public way. Kathleen McIlhinney has shared with Catherine Hopkins Bryan Purdey us the poem she Michael Gould Dee Hawksworth wrote for her June Fox Susan Barritt husband, Steve: James Walker Sarah Matheson Malcolm Hoyland Jennifer Smith Eric Rapsey The first person to be remembered John Lord My Husband on the wall is our founder, Sarah Carol Hayman Matheson who, disillusioned with the Sidney Burrows We had lots of happy years lack of knowledge of multiple system Peter Youngs Without too many tears atrophy when she was diagnosed, drew Francis (Frank) Strange Laughter was the main stay on her previous experience of charity Peter Shilling That kept those demons away work to set up the Trust in 1997. She Eileen Norris passed away in 1999. William (Bill) Stewart I’ll Always Love You Sarah’s brother and Trustee, Hugh Amber Wills Whitney sang to rhyme Matheson, said of the memorial wall’s Joyce Lancaster And when it came to fruition launch, “Sarah founded the MSA Trust Lorraine O’Shea We knew it was time to help bring relief to people suffer- Daphne Jennings ing from a disease few knew anything Betty Shore I’ll miss you Pards* about. This Memorial Wall helps to Tony Mills More than anyone will know. keep her memory alive.” MSA Rita Saul But we both knew Lorna Sundström It was the right time to let go Jos Young To find out more about the Thomas Allinson God Bless You Steve xxx Memorial Wall, please contact Peter Kerby Katie Heyward at the office: katie. June Ball (*Pards was a family [email protected] or call Bill Colligan nickname for Steve) 020 7940 4666.

www.msatrust.org.uk | ISSUE 35, 2012 17 RAISING THE PROFILE OF MSA

Building awareness of MSA amongst health professionals and the general population is an ambition of the Trust, and a sentiment shared by many of our members.

n simple terms, the more tempted to try your hand at TWITTER Ipeople hear about MSA the getting some publicity too, per- A tweet is a bit like a text mes- more informed and educated haps alongside your fundrais- sage and is 140 characters long. they become on the care and ing events, here’s a quick guide You can send a generic message welfare issues of those living on how to go about this. to all your followers, as well as with it on daily basis. More messaging people that aren’t knowledge and understanding PROMOTING YOUR following you. Tweets are also of MSA in the community will EVENT a good way to tell people what hopefully also reduce the iso- Facebook and Twitter are good you’re up to. lation many people feel from places to start. Make sure you having a rare disease. let the Trust and all its sup- GETTING INTO THE The Trust has recently em- porters know what you’re up MEDIA ployed a part-time freelance to by putting it on the Trust’s Any publicity (as long as it’s public relations professional Facebook page and by “tweet- accurate!) you can get for your to help bring MSA out into ing” us. Whether you’re Face- event is great, and often sto- the open, and Ellie Taylor de- booking or tweeting, make sure ries that end up in the national scribes here how we can all help you get your friends on Face- newspapers and on television to make MSA more visible. book to share and like what started out in a local paper, There are many individu- you put on, and your followers including the free ones. Get- als and families across the UK on Twitter to retweet (RT). ting in contact with your local who are very successful in get- paper is a good place to start. ting publicity for the Trust and FACEBOOK Try to keep your information MSA. Often this is because Most people have a Facebook to one page and include things they are undertaking a fund- account and it’s a great way they’ll want to know about: raising activity and, as part to let people know what you’re of this, want to promote their up to. Make sure you update WHAT & WHY event. The Trust will be work- your Facebook status regular- Write a few lines about what ing hard to get MSA in the ly. You can also link to your you’re doing and why. Make national media and on social justgiving.com page. sure you include a couple of media networks, but if you’re sentences on MSA (please con-

18 ISSUE 35, 2012 | www.msatrust.org.uk tact me on 020 7940 4666 or by RECENT MEDIA the family have set up to allow email at ellie.taylor@msatrust. COVERAGE them to go on a holiday and org.uk and I can help you with Our members are always busy create some wonderful memo- this). fundraising and many also ries. Colin said, “It was a very manage to get some publicity. nice and emotional surprise. WHEN Here’s a few examples: The presenters were in tears. Make sure you tell them when The programme has touched you’re doing it. Often the local In August Sam Crawford in a lot of people. On Thursday newspaper will want to cover Falkirk who has MSA, was fea- I had 23 followers on Twitter your fundraising when you do tured in a double-page spread and now I have more than 700, it; they may also want to come in the Scottish newspaper, The just from being on the show.” along and take a photograph Sunday Post. The interview (remember, this is a great op- was very moving and really This is the first time MSA portunity to wear your MSA explained what it’s like to live has been featured on national t-shirt!). with MSA. Sam talked very television. The show had over openly about the impact it has a million people watching and WHO had on her and her 16-year old the impact of appearing on Tell them who you are and daugher, Rhanna. Sam is put- such a popular television pro- make sure you include contact ting together a memories box gramme was felt on the Trust’s details, including your mobile for her, “It’s filled with old website with unique visits up number, and Twitter and Face- pictures, notes and little keep- by over 1,000 for the month of book details if you have them. sakes I’d like her to have.” July. The power of good pub- Please give them the Trust’s licity! MSA contact details too (020 7940 Over in Norfolk, Martha Hughes 4666, www.msatrust.org.uk). was in the Eastern Daily Press when she did her first skydive CHASE! in aid of the Trust, watched by Once you’ve sent them infor- mum, Helen, who has MSA. mation about your event, don’t As well as raising the profile be afraid to call up (ask for the of MSA in the local paper, planning or news desk) nearer Martha also raised more than to the time to check they’ve re- £1,900 for the Trust. She says, ceived your information and to “It was brilliant - the best bit The Ketteringham family on TV find out if they’re interested in was the freefall!” covering it. Don’t be surprised if they didn’t receive it the first The Ketteringham family time round, just explain what from Lincolnshire appeared your event is on the telephone on ITV’s This Morning show If you’d like to know more and then send them the infor- in July. Colin, his wife Louise, about getting publicity for mation again. and four young children were your fundraising events, interviewed by presenters Kate or to find out how to help LET US KNOW Thornton and John Barrow- raise the profile of MSA It would be great to know if man. The interview was very more generally, please get your local media are intend- emotional and talked about in touch with Ellie Taylor ing to cover your event, and if MSA and how it affects people. at the Trust on 020 7940 there’s any chance of having Colin and his family received a 4666 or by emailing her a photocopy of any coverage, surprise gift of holiday vouch- on ellie.taylor@msatrust. fantastic! ers from Thomson Holidays to org.uk. go towards the holiday fund

www.msatrust.org.uk | ISSUE 35, 2012 19 TRUST CHRISTMAS CARDS 2012 NOW AVAILABLE!

We’re pleased to introduce our 2012 Christmas cards, designed to raise both funds and awareness.

Each design comes in a pack of 10, and costs £3.50 plus post- age and packaging. Please see our cost table for prices if buy- ing multiple packs.

Please fill in this form and re- turn it to us enclosing a cheque made payable to Multiple Sys- tem Atrophy Trust, and send Santa Delivery Christmas Tree Village to: MSA Trust, Southbank House, Black Prince Road, London SE1 7SJ. Our two designs are 108mm x 108mm and each have a greeting inside reading: With Best Wishes for Christmas and the New Year. Thank you for your support!

Pk(s) 1 2 3 4 5 6 7 8 9 10

COST £4.00 £8.00 £11.60 £15.10 £19.50 £23.00 £26.50 £30.50 £34.00 £37. 60

MULTIPLE SYSTEM ATROPHY TRUST CHRISTMAS CARD ORDER FORM

Name:......

Address:......

Postcode:...... Telephone:......

Santa Delivery (Qty):...... Christmas Tree Village (Qty):......

Total payment enclosed £......

Please either cut here or photocopy and return to us by 5 December. Thank you! We endeavour to ensure the accuracy of articles in MSA News. Please note, however, that personal views and opinions expressed are not necessarily endorsed by the Trust. Designed by Base Media 020 7840 0150. Printed by INQ Design 020 7737 5775.