MSA News (issue 24)

From the OfficeWe at the SMT wish all our readers a pleasant 2009. This edition leads with a

brief description of autonomic testing centres and various tests carried out attwo international neurological centres, which are based in London. You may noticethat this edition has been published in colour; we hope you like the new format.There are one or two staff changes. In September 2008 we reluctantly accepted

the resignation of the SMT Administrator, Natalie Fernandes. Natalie had soonsettled in and quickly became an efficient and well liked member of the team, butunfortunately had to leave the Trust because of ill health. We wish Natalie all thebest for a swift and full recovery. Linda Campbell, a previous SMT Trustee andvolunteer for the Trust is now the new permanent part-time SMTAdministrator. Wewelcome Linda back to the Trust.Lee Potiphar, the full-time SMT Nurse, is leaving to become a UK Clinical

Research Nurse within the UK Clinical Research Network, based at St. Mary’sHospital in London. Lee has thoroughly enjoyed his time at the Trust. A new nurseis being recruited at the moment. Samantha Pavey, who works part-time as the MSASpecialist Nurse, will cover all calls and emails while the recruitment process is inprogress. Linda will answer calls and emails to the office as normal and pass theseon to Samantha, if required. We always endeavour to answer all calls, emails andletters as quickly as possible. However, please be patient with us over the coming2 to 3 months, while a new nurse is being recruited and trained.We are looking forward to putting together and publishing the next issue of

SMarT News. The Sarah Matheson Trust warmly welcomes any contributions thatyou are able to send (by 15th May 2009 for the next issue) and hope that thecontents of this edition will be both helpful and informative.

Lee, Samantha and Linda

SMarTContents

From the office 1

Treating and 2researching MSASpotlight on work at the autonomictesting centres and a new study

Saliva control 5SMT nurse Samantha Pavey givesan overview of the issues

Carer’s Award 5Nominate your carer

Regional Support 6News from the groups

Websites of interest 8Websites that may be of help arehighlighted

Fundraising 10Find out what members havebeen doing to raise funds...

News 14

Letters 15

How to get involved 16

NewsNewsNews

The Sarah Matheson Trustprovides a support and

information service to peoplewith Multiple System Atrophy(MSA) and other autonomicdisorders, their families and

carers, health care professionalsand social care teams.

We also sponsor and supportresearch into MSA

The newsletter of the Sarah Matheson Trust

Issue 24 Spring 2009

Contact details for the SMT TeamSamantha Pavey (Specialist Nurse): 020 8150 6250

[email protected]

Linda Campbell (Administrator): 020 7886 [email protected]

The Sarah Matheson TrustBox 200, St Mary’s Hospital, Praed Street

London, W2 1NY

www.msaweb.co.uk

Fax: 0207 886 1540

Please note: There have been a few instances of SMT members callingthe wrong telephone number or writing part of the addressincorrectly. Please only use the telephone numbers above and ifwriting to us, use Box 200 as part of the SMT address.

SMarT News Spring 09:SMarT News Autumn 2006 mike 6/2/09 10:48

Feature

SMarT News – The newsletter of the Sarah Matheson Trust2

In your treatment for MSA yourconsultant may have been one of the

Patrons of the Sarah Matheson Trust,Professor Christopher Mathias.Professor Mathias has been aConsultant at St Mary's Hospital since1982 and at the National Hospital forNeurology and Neurosurgery (NHNN),Queen Square since 1985. He isProfessor of Neurovascular Medicine atImperial College London and theInstitute of Neurology, UCL. ProfessorMathias is Clinical Service andResearch Director of these two leadingdepartments that specialise inautonomic and neurovasculardisorders. Both Units are referralcentres for the UK, Europe and

Treating and ResearchingMSA and Parkinson’s Disease

worldwide. The Neurovascularand Autonomic Medicine(Pickering) Unit at St Mary’sHospital is also home to theSarah Matheson Trust’sLondon-based office.At the two Units, scientists,

clinicians and specialistautonomic nurses work togetherin treating a wide spectrum ofautonomic disorders and dysfunction,particularly in neurological disorders,such as Multiple SystemAtrophy (MSA)and Parkinson’s disease (PD). Othercardiovascular autonomic disorderstreated include, postural hypotension,neurally mediated syncope (fainting),vasovagal syncope, abnormalities of

temperature regulation( h y p e r h i d r o s i s[excessive sweating]and anhidrosis [lack ofsweating]) and medicaldiseases involving theautonomic nervoussystem, some commonsuch as diabetesmellitus and others

with devastating outcomes, if untreated,such as amyloidosis (a condition whereamyloid proteins are abnormallydeposited in organs and/or tissues).The breadth and depth of their work in

many diseases enables the team to dealwith the various complex autonomic-allied problems with MSA. This holisticapproach is crucial in improving care andpreventing complications in MSA.The Autonomic and Neurovascular

Medicine Units have pioneered andimplemented many advances forautonomic and allied conditions that aiddiagnosis, understand underlyingabnormal mechanisms and thus improvecare for patients with various forms ofautonomic failure. Treatments includedrug therapy and are combined withlifestyle management, education,information and counselling. In additionthe Sarah Matheson Trust offers anintegrated service for patients with MSA,providing advice and support.

Professor Mathias

The Autonomic Team at the National Hospital for Neurology and Neurosurgery

Andrew Owens, the Clinical Research Coordinator for the Neurovascular andAutonomic Medicine Unit at Imperial College London, describes the workcarried out at two major autonomic testing and treatment centres. He alsodescribes the early stages of an interesting clinical study.

– the Role of the Autonomic Nervous Systemin Health and Disease


Feature

SMarT News – The newsletter of the Sarah Matheson Trust 3

MSA & Parkinson’s Disease –Droxidopa (L-Dops) Clinical StudyAs well as their clinical services, bothUnits have earned internationalrecognition as unique ground-breakingcentres for advancing the field ofclinical autonomic research.One drug advance is likely to be the

replacement drug Droxidopa, whichwill be tested shortly in a largeinternational trial. Professor Mathias isa Principal Investigator for Europe andhis units are key research centres in theclinical study to define the efficacy ofDroxidopa on reducing orthostatichypotension in MSA and Parkinson’sdisease. Droxidopa has a majoradvantage as it can be given by mouthand is converted in the body tonoradrenaline, the depleted naturalneurotransmitter, which can otherwiseonly be administered intravenously.Detailed description of the trial anddetails of enrolment will be described inthe next edition of SMarT News.The Units are also embarking on a

collaboration with the Parkinson’s andAgeing Research Foundation inBangalore, India, to determine if certaintypes of autonomic dysfunction signifythe early onset of MSA and Parkinson’sdisease, even before the typical motorfeatures occur. If successful, this maynot only prevent the onset of thedebilitating disabilities that characterisethe disorder, but also make it easier forMSA and PD to be diagnosed anddifferentiated early on in the diseaseprocess. This has potential implicationsfor using neuroprotective drugs at avery early stage of these diseases.The Units’ many research

contributions of direct relevance topatients’well-being include the key roleof cardiovascular autonomic responsesto essential activities in daily life, suchas exercise, eating and standing upright.These unavoidable stimuli can triggerhazardous responses, if the patient has amalfunction of the autonomic nervous

Clinical Autonomic Scientists at St Mary’s Hospital

The Clinical Autonomic Scientists in the Neurovascular and AutonomicMedicine (Pickering) Unit at St. Mary’s Hospital, London are MadelineTippetts and Michael Peche; with a third clinical scientist shortly joiningthem. Their roles have been pioneered by Professor Mathias and involvetesting and investigating patients with a wide variety of conditionsaffecting the autonomic nervous system, which supplies every organ in thebody and also controls key functions, such as maintaining blood pressureand body temperature.Autonomic malfunction is acommon component ofMSA, Parkinson’s disease,and diabetes, amongstmany other disorders. Suchdisorders are also a cause ofsyncope (fainting) inaddition to other commondisorders such as vasovagalsyncope and PosturalTachycardia Syndrome(PoTS). Autonomic disordersaffect a broad range ofbody systems, some crucialfor survival, such as bloodpressure control duringstanding (causing posturalhypotension) and, thermoregulation (with excessive or diminishedsweating, and abnormal overheating or chilling) as well as influencing

bladder, bowel and (inmales) sexual function.

The Clinical AutonomicScientists carry out a rangeof tests into autonomicreactions. These includemeasuring blood pressureand heart rate in responseto various stimuli whilst ona tilt table, to stress (such asmental activation) and tofactors in daily life (food

and exercise) using non-invasive techniques and state-of-the-artequipment. The results of these tests enable our clinicians to diagnoseautonomic disorders with greater accuracy, to decipher which aspects needtreatment, and to plan the most appropriate interventions and drugsrequired. Importantly, the tests enable monitoring progression or reversalof disease and the effects of treatment that could cure or reduceautonomic dysfunction.

Professor Mathias states “the Unit has a longstanding reputation as acentre of clinical and scientific excellence for a wide range of autonomicconditions. Michael and Madeline are crucial in diagnosing and evaluatingsuspected autonomic disorders. Their combination of clinical and scientificexpertise enables us to pioneer and introduce new advances in neurovascularand autonomic medicine, which is of direct benefit to patients”.

Andrew Owens, Clinical Research Co-ordinatorand Lee Potiphar, Autonomic Liason Nurse

Testing on a ‘tilt table’

The testing equipment

Continued on page 4


Feature


One of the main objectives of theTrust is to improve the scientific

understanding of the disease processinvolved in MSA by funding medicalresearch. Thanks to the wonderfulgenerosity of our donors we have beenable to award considerable funds forsupporting research.In the last SMarT News (Issue 23)

we reported a project supported by theTrust, which began in January 2008.Professor Tamas Ravesz and Dr JaniceHolton, who are based at the QueenSquare Brain Bank for NeurologicalDisorders, supervised the project. Itsaim was to gain further understandingof the mechanisms involved in theformation of ‘glial cytoplasmicinclusions’ (GCIs). This research areais of particular importance because ithas previously been shown that thenumber of GCIs increases with theduration of disease and greaterneuronal cell loss. The results of thisproject are currently undergoinganalysis and a manuscript is beingprepared for publication.The Trust advertised again in 2008,

inviting applications for project grantsof up to 3 years. The Trustees sought

Research update

advice of members of the Trust’sResearch Advisory Panel, whoreviewed all of the applications thatwere received. We are delighted toreport that they strongly recommendedtwo applications, which we will besupporting over the next three years.One of these projects will be under

the supervision of Dr Holton and willlook to extend the current researchinvestigating mechanisms underlyingGCI formation. The study shouldincrease our understanding of thedevelopment of the cellular pathologyin MSA and might well lead to rationaltreatment development.Dr Henry Houlden will supervise

the second project. Although MSA veryrarely runs in the family, a number ofrisk factor genes may contribute to thedevelopment of the disease. This

project will aim to examine thesegenetic risk factors in order to revealmore about the cause of MSA andpotential treatment possibilities.Dr Houlden is at present creating a

bank of volunteers who have beendiagnosed with MSA (and wherepossible, their spouses) to provideblood samples. The blood sampleswill be used for DNA analysis. Forfurther information about this project,please contact Dr Houlden [email protected] at TheInstitute of Neurology and TheNational Hospital for Neurology andNeurosurgery, Queen Square, LondonWC1N 3BG. We will keep you fullyinformed of the project’s progress, infuture issues of SMarT News.

Darcy HareSMT Trustee

system. Blood pressure can bedangerously lowered with posturalchange (such as on standing), foodingestion and modest exertion, whichthen reduces blood flow to the brain andother vital organs, especially whenupright. Symptoms due to posturalhypotension can be very debilitating forpatients reducing their quality of lifeand may result in falls and injury. TheUnits’ clinical research thus helps thoseaffected by autonomic malfunction andis of practical importance.The autonomic nervous system

remains a relatively under-appreciatedarea of medicine and the Units continue

to see patients with medicallyunexplained symptoms, erroneouslythought to be psychosomatic andwithout a medical basis. This is why weat St Mary’s and the National Hospitalat Queen Square place considerableemphasis on raising awareness aboutthe autonomic nervous system, its

For further information about Professor Mathias and the Autonomicand Neurovascular Medicine Unit, please visit:

www1.imperial.ac.uk/medicine/people/c.mathias/ andwww1.imperial.ac.uk/medicine/about/divisions/neuro/npmdepts/clinneuroscience/neurovascular respectively. If you would like further information

about future clinical research or the upcoming Droxidopa study,please email me at: [email protected]

functions and dysfunctions and wish tospread this knowledge among thegeneral public, healthcare and medicalprofessions.

Andrew OwensClinical Research Coordinator,

Imperial College London


Advice


Some people may experiencediscomfort and embarrassment due

to reduced saliva control. Saliva playsan important function in the mouth,helping to break down food while alsoprotecting the mouth from drying outand cracking. However either too muchor too little saliva can cause a numberof problems.We all produce about a litre and a

half of saliva every day. When we arehealthy, we swallow frequently. Peoplewith MSAmay have a reduced swallowreflex and therefore the saliva can poolinside the mouth. Alternatively, salivamay be thick and difficult to swallow.Some types of medication may causethe drying up of saliva and a drymouth.So, what can be done to help reduce

the problems of poor saliva control? Inaddition to your GP, a Speech andLanguage Therapist (SaLT) is anobvious first point of contact forassessing and providing advice on

Saliva ControlThe SMT nurses have received a number of enquires, both via thetelephone and at support and awareness days, regarding issuesrelated to saliva control. Samantha Pavey, the MSA Nurse Specialist atthe Trust provides a brief overview of issues related to saliva control.

issues related to swallowing.Recommendations might be made, byyour SaLT, regarding food and drink,posture, changing routine and possibleexercises to strengthen the lips.Medication might also berecommended, such as glycopyrroniumor hyoscine. However, all treatmentshould be discussed with your GP,particularly before proceeding with anynew medication. The SMT stronglyadvises anyone who is worried abouttheir medication or any side effects tospeak to a Doctor or Specialist Nurse,immediately.A range of measures can also be

carried out to reduce the thickness of

saliva, or if there is a problem withproduction, helping with too littlesaliva. I have produced a practicalguide detailing saliva control, whichshould be available on our websitesoon. I am happy to take calls related togeneral issues about saliva control:telephone 020 8150 6250.

Samantha PaveyMSA Nurse Specialist

Please note: The informationcompiled represents suggestionsonly. It should not replace individualassessment and treatment by anappropriate specialist.

Please also refer to Issue 19 of SMarT News (Winter 2005) for a moredetailed discussion of speech and swallowing in MSA. The article can bedownloaded via our website, under ‘backcopies of SmarT News’, see:www.msaweb.co.uk/smart_2005_winter.pdf.

If you have any particular issues you would like published in future editionsof SMarT News, please phone Linda at the office on: 020 – 7886 1520.

Samantha Pavey

We are happy to announce the re-introductionof the ‘Carer Awards’, which were last run

in 2006 (see issue 20). There are two types ofawards. The first is the ‘personal carer award’,which is for a spouse, friend, partner, familymember or neighbour. We want to know who helpsyou get through the day or week, who keeps yousmiling, who makes a difference by doing or sayingthe things that matter.The second is called the professional award and is for

any professional. This could be a therapist, nurse or doctor

but it could also be a shopkeeper who puts a chair outespecially for you or the librarian who tracks downthat talking book you want to listen to.To nominate someone write or ring us with the

person’s name and the reason why you would like tonominate them. You can nominate one person foreach category. Each person nominated will receive acertificate, small gift and a mention in the next

edition of SMarT News. This is your opportunity to saythank you. Please get your nominations in by the end ofApril 2009.

Carer Awards – Nominations Now Open!


Regional Support


Everyone in deep contemplation

GloucesterA new support group was started on 10thDecember 2008. The first meeting was held inthe lounge area of a comfortable public housein Cheltenham (http://www.thehewlett.co.uk/).The meeting went very well, with 9 peopleturning up. The SMT Nurse provided a briefoverview of MSA and treatment options. Anumber of questions were raised by thoseattending. A selection of sandwiches wasprovided and everyone left feeling that they hadgot something worthwhile out of attending. Adate for the next meeting will be placed in afuture issue of SMarT News and on the SMTwebsite. Janice Davies

Contact Point

Mrs Elizabeth BrackenburyTel: 0115 933 3083Or, Mr Ian JonesTel: 0115 919 [email protected]

Lady Laurelie LaurieTel: 01206 210 410

Ms Karen WalkerTel: 077103 12552Or, 01274 861 947

Mrs Ann McLennanTel: 01704 568 [email protected]

Mrs Jane HandyTel: 01726 74792Or, Ms Jan PearceTel: 01726 [email protected]

Ms Janice DaviesTel: 01242 224617www.thehewlett.co.uk/index.htm

Region

East Midlands GroupMeets twice per year

Essex GroupMeets twice per year

Yorkshire GroupMeets twice per year

Lancashire & Merseyside GroupMeets 4 times per year

Cornwall GroupMeets 4 times per year

Gloucester GroupMeets (possibly) twice per year

Address

Holme Pierrepont HallHolme PierrepontNottsNG12 2LD

The Old Rectory,Little Tey,Colchester, EssexCO6 1JA

In the first instance, pleasephone or email:[email protected]

72 Lynton RoadHillside, SouthportPR8 3AP

Address to be confirmed

The Hewlett, Harp HillCheltenham,Gloucester GL52 6QG

These support groups are run entirely by members of the SMT, for the benefit of those whose lives have been impacted by adiagnosis of MSA. If you are interested in the possibility of running your own local support group, the SMT would warmlywelcome your enquires and assist in providing relevant information and guidance on how to start one up.

The table of regional support groups, published in the previous two issues, proved so successful that we havedecided to re-publish it. A new support group has been created in the Gloucester area – we thank Janice Davies forbeing willing to provide the time, effort and venue for the group. Further information on support groups can befound on the SMT website (www.msaweb.co.uk/) under ‘our services’.


Regional Support


East MidlandsWe met on a lovely day in autumn, 1stOctober, and were very happy towelcome two new members to ourgroup. Some old friends, who havesupported us right from the start, weresadly unable to be with us. Our thoughtsgo out to them.Lee, the SMT Nurse, came to the

support group and talked to us. Heprovided a brief but informativepresentation on MSA, lookingspecifically at typical symptoms and

CornwallOn Wednesday 1st October, the newCornwall Support Group organisers heldtheir first SMT meeting at SummercourtVillage Hall (in mid Cornwall). It wentvery well, with everyone enjoying theinformal presentation, provided by theSMT Nurse. Everyone had a good chat,with a local Parkinson’s Disease Nursealso attending. Coffee and tea wasprovided, with a range of sandwiches to

practical day-to-day management. Leehanded out a very good printout of thepoints he was making and was able toclarify and clear up some previous

misconceptions, which proved verybeneficial for all concerned.We had the usual tea and cakes

while people chatted with one another,which everyone enjoyed. A raffle wasalso held, which raised £16.00. Therewas a good turnout, with about 15people present at the meeting. We planto meet up again on Wednesday 29thApril from 2pm to 4.30pm at HolmePierrepont Hall.

Elizabeth Brackenbury,SMT Trustee

EssexOur support group met again on 30thOctober when about 28 of us sat downat 1pm in Great Tey Village Hall for ameal of Shepherd’s pie and pavlova (ameringue dessert, named after Russianballet dancerAnna Pavlova). The noticeof our meeting in the Autumn issue ofSMarT News was a great bonus as itresulted in no less than six newmembers ringing up to introducethemselves and asking if they couldjoin us.Furthermore Maria Goodman, who

lives in Great Tey, is a freelance nurseand a member of the St. JohnAmbulance, telephoned us to say thatshe would like to see what happens at aregional support group meeting. Mariawas most interested in attending and tomeet everybody and hear more about

Sitting, chatting and eating cake

Chatting, eating cake and drinking tea

For information on future support group meetings please see our regularly updated Events Diary, on the website.Please see: http://www.msaweb.co.uk/events.htm.

of tea and cakes and if the noise andlaughter was anything to go by, theparty seemed to have been a success.Our next meeting will be during theEaster holiday. Please provisionallypencil in 6th April 2009 as a possibledate. We hope Samantha will be able toattend and we shall look forward toseeing everyone again.

Bay Laurie

MSA, particularly asshe was at the timehelping to look afterone of the membersof the group (whohas sadly since died).We were very

fortunate on thisoccasion to haveLee, the SMT nursefrom the Londonoffice, with us. He circulated round thetables at lunchtime and afterwards wasable to address our members andanswer a great number of questionswhich we had suggested people shouldwrite down and bring in with them.Samantha was unfortunately unable tocome at the last moment, but we hopeto see her on a future occasion.We ended the afternoon with cups

choose from, and Jane baked ascrumptious cake!Finding suitable venues to cover

such a large area, as Cornwall, ischallenging. So, if anyone would like ameeting nearer to where they live, orhas any other ideas on staying in touch;please contact us so that we knowwhere to focus our efforts.The next meeting is scheduled for

Friday 27th March at Connor Downs,

near Hayle. The venue will be in the WIHall from 11am to 3pm.

Jan Pearce and Jane Hardy

The SMT Nurse discusses MSA


Information


‘Patients-like-me’ websiteDr Paul Wicks, a psychologist bytraining, is Research and DevelopmentDirector at patientslikeme.com. Herecently gave a demonstration, at theSMT Office, of his new website thatmight be of value to ourMembers. Pleasenote: the website is funded by thepharmaceutical industry, to gaugemedication treatment.The website has been designed to

include people diagnosed with MSA, tohelp them measure their condition, share

Websites of interestOver 2008, the SMT Nurses have looked at a range of new websites related toMSA. It has been decided to include some of the more interesting sites foryou to peruse. Please feel free to contact the office with any interesting MSArelated websites you have found, while ‘surfing the web’. While the websitesare shown here, we do not necessarily endorse their content. They have beenlisted for interest only.

outcomes with others and learn moreabout the condition. The websitepatientslikeme.com was originallydesigned for people with motor neuronedisease (MND), but over the years hasbeen enhanced to include otherneurological conditions including MS,Parkinson’s disease and more recently,MSA.

The website allows people with MSAto find another ‘patient like me’, whetherit is someone who lives nearby or whomay be taking the same medication. Thesite is also open to caregivers andhealthcare professionals who might wantto share information or learn more aboutthe condition. Membership of the site isfree - visit www.patientslikeme.com.


Information


‘Right care Right deal’coalition websiteA national campaign has recently beenlaunched to build public awareness andsupport for innovative solutions withinthe social care system for older anddisabled people, their families and carers.Right care, Right deal, a coalition of threeof the UK’s largest charities – Help theAged, Counsel and Care and Carers UK –has launched a new campaign website.With the Government indicating that

social care is an urgent political priority,the campaign will urge the government torenew its vision for the future of socialcare in England. To coincide with thewebsite launch, the coalition haspublished a major new report on care andsupport in England in the 21st Century.Entitled ‘It’s Everybody’s Business’, thereport underlines the difficult taskMinisters face as they prepare a GreenPaper on social care, due early this year.Visit the website at www.rightcare.org.uk

‘Easy-fund-raising’ websiteEasyfundraising is a shopping directorylisting some of the main high-street storesincluding Argos, Next, Amazon,Debenhams, John Lewis, Toys R Us,HMV and over 600 other well knownstores. When someone shops online with

Hospital Discharge

An interesting booklet on help for

older people in hospital is provided

by the Social Care Institute for

Excellence (SCIE). SCIE

(www.scie.org.uk/) is an

independent charity, funded by

the UK Department of Health and

the devolved administrations in

Wales and Northern Ireland. It

identifies and provides information on all aspects of social care

throughout the United Kingdom.

The booklet provides help for those planning a hospital stay, particularly

guiding older people to understand and manage any feelings, anxieties

and concerns they may have when they are entering or leaving hospital. It

provides practical suggestions on how patients can be involved in their

own treatment and care, and in planning for return home.

The booklet can be downloaded from http://www.scie.org.uk/publications/

misc/hospitaldischarge/index.asp.

Going into hospital can be an anxious time for anyone. People with long

standing medical conditions like MSA have additional considerations that

may increase this anxiety. Being prepared for admission can reduce worry,

will make an admission easier and can even speed up recovery time. The

SMT has produced a leaflet called ‘Going into Hospital’ about these issues,

for anyone with MSA, who is planning to go into respite care, day centres

and day hospitals or rehabilitation units. Please contact the office, if you

would like to be sent a copy.

any of the stores, using the links providedon the easyfundraising site, they generatea free donation of up to 15% of thepurchase price, which goes to the SMT.It does not cost a penny more to

shop and raise funds in this way. Infact, shoppers might even be able tosave money as many retailers giveexclusive discounts, special offers andeven ‘e-vouchers’ when they shopthrough the easyfundraising site. All thatis required is to register free at:http://www.easyfundraising.org.uk/sarahmatheson and use easyfundraising everytime someone shops online.

‘Easysearch’ websiteFunds can also be raised, every timesomeone wants to search the web, viaeasysearch, a search engine ‘with a

difference’. When someone searches on-line using easysearch, funds will be raisedfor the SMT for every search made. Forexample, making just 10 searches a daywith easysearch instead of a searchengine such as say Google, could raise upto £20 a year for the SMT.The easysearch system combines the

strengths of several internet searchengines together, such as Yahoo, MSNand ASK.com. As with other similarsearch engines, easysearch tracks themost relevant and accurate resultsfrom across the internet. Visit:http://sarahmatheson.easysearch.org.uk


Fundraising


Paul Young’s Dover Harbour SwimAfter 3 miles swimming into severeheadwinds and battering waves, withmany of the support boats struggling,the referee called a halt to the race. MyWindermere swim ended with mesitting on a remote jetty waiting to bepicked up by a safety launch. I stillwanted to complete the 10.5 miles(roughly 17km) I had been sponsoredfor and the best way to do this was aDover Harbour swim.On Saturday, 14th October 2008, I

awoke at 5.40am to get to Doverharbour to be met by Freda Streeter(mother of Alison Streeter, who hasswum the Channel 43 times). After aquick safety briefing by Freda, I was inthe water by 8.20am and remained thereplodding up and down the harbour forthe next 5 hours, stopping only 3 timesfor a 30 second feed.Luckily, the weather was kind and

the only problem I encountered was anembarrassing sun tan line on my facecaused by the swimming hat andgoggles. The water temperature wascolder than normal for that time of year,but still balmy at 15 to 17°C.In 2003 my dad was diagnosed with

MSA. The disorder, over the past 5years, has transformed him from anactive person to sadly being unable tomove from his bed. After a long battle,he died on 21st June 2008.MSA is a relatively rare disorder

and very little guidance and supportwas provided to my parents upon hisdiagnosis, until we found the SMT.Initially, they helped prepare us for theyears ahead by explaining how thecondition would impact upon us andwent on to provide constant support andadvice to both my parents. Any helpthat can be provided for carers andsufferers alike is vital, along withfurther funding for research.

Thanks to everyone who has raised funds for us in 2008. We are always amazed

and genuinely appreciative of the wide-ranging efforts that SMT members and

their families make in fundraising. Here are some recent achievements.

48 hour ‘Dartathon’

Wow! I knew that the people of Lode and the surrounding villages were

kind and generous but on the weekend of the 21st November 2008 they

surpassed their normal kindness and generosity by a country mile! In July, I

decided to try and make a difference to the people who are suffering from

Multiple System Atrophy (MSA). MSA is the illness that, with great dignity,

my mum Valerie suffered from.

Many of my friends and family said "why 48 hours, why not just 24?"

Well, I wanted to make it a real challenge. Setting up at the social club on

Friday afternoon almost came to jeopardy when I received a phone call

saying that my son Dan had most probably broken his right wrist (he had

broken his left one about 3 months previously) but Grandad Clive stepped in

as he often does and went to A & E with him. 8 o'clock soon arrived and we

were on the Oche, throwing arrows at 4 different boards and recording high

scores and checkouts!

As closing time approached the great supporting cast gradually

dwindled, promising to come back and support the next day after a well

earned rest. This left around a dozen hardy souls to cover the late shift and

enter the witching hour and beyond until Saturday breakfast arrived,

superbly cooked at 49 Northfields by Clive.

On Saturday from mid afternoon the club was as busy as we've seen it for

many a year and this continued into the evening when Dan made his come-

back with right wrist in plaster but with throwing arm intact. Somehow we

managed to motivate each other until dawn finally broke. Yet more new

faces arrived at lunchtime and the last darts were thrown at 8pm to

complete the 48 hour-long session.

The Cornell family would like to take this opportunity to thank

everyone who sponsored this event so generously. We raised almost £4,000

although we are still collecting money. The total sum raised will be published

in February's LodeStar.

Jonathan Cornell



Fundraising

Neil and Robbie relax at the top of the mountain

I swam as a tribute to my mum anddad’s courage and to help others in asimilar situation in the future. Over£3,600 was raised and I would like tothank everyone for their kind donations.

Paul Young(abridged from justgiving.com website)

Original Mountain MarathonAfter months of preparation running upmountains and honing navigationalskills, on the last weekend in October,we (Neil Price and teammate RobbieHall) began the Original MountainMarathon (OMM). The OMM is a two-day adventure race designed to test aparticipant’s endurance, navigationalskills and ability to be self-sufficient.Competing in the A-class, we facednavigating over 40 miles and climbing3,000 feet.My father was diagnosed with MSA

two years ago and has receivedtremendous support from the SarahMatheson Trust. Given the magnitudeof the OMM event, I decided this wouldbe a great opportunity to raise funds forthe Trust.The venue for ‘OMM 2008’ was the

Lake District and as race day loomed,weather reports for the area were notlooking promising, with predictions ofstrong winds and heavy rain. In its 40-year history the race has never beencancelled and 2008 wasn’t going to beany different. Therefore, waterproofsand careful route selection were theorder of the day.Competitors gathered at race HQ

early on the Saturday morning for theirvarious start times. Whilst conditionswere dry, even down at low level thewind was already strong, which servedto heighten the anticipation. We startedat 8.20am, but by 10am the rain startedfalling heavily and hampered progress.In this type of event you have to

take one hill at a time and sometimesone step at a time. With winds gustingover 100mph, staying on our feet was a

big enough challenge. Conditionsworsened throughout the day, with therace organisers taking theunprecedented step of calling off therace. After 6 hours in the mountains andwith just 2 checkpoints to reach wewere forced to abandon the challenge.Despite only being able to complete

day one of the race, all sponsorshipmoney has been collected making agrand total of £2,457. However, I intendto take on the challenge again in 2009 –let’s hope the weather is kinder secondtime around! Neil Price

Maureen’s BallMy grandson, Haydn Hammond,decided to organise afund-raising event to raisemoney and awareness forthe Trust, in memory ofMaureen Hammond whodied of MSA in 1998.Haydn used ConceptEvents to hold thefundraising evening,which is an eventsorganising company heruns. The event was held at

Cardington Village Hall inBedfordshire on 25th October 2008 andwas a great success, with almost 100people attending. A total of £1,000 wasraised.The next event is planned for the

29th August 2009 at Harrowden Lane,Cardington. It will take place in athemed marquee and is mentioned inthe Concept Events web site, see:http://conceptdiscos.moonfruit.com/ forupdates. Percy Hammond

Linda’s Charity RunI set myself a New Year’s resolution atthe end of 2007 that I wanted tocomplete a charity run in memory of

my Mum, BridgetLynch, who had MSAand passed away in May2007, aged 50 years. Iwanted to raise moneyfor the Sarah MathesonTrust because the Trustworks hard to raiseawareness of MSA,funds research into theillness and also supportsfamilies and carers ofA smiling Linda


Fundraising

SMarT News – The newsletter of the Sarah Matheson Trust

sufferers. When Mum was firstdiagnosed, it was difficult to knowwhere to turn to for information for thiswidely unknown illness and I found theSMT very helpful.As a novice runner, 10 kilometres

was difficult for me, but made so mucheasier by my knowledge that I wasraising money in memory of Mum andfor such a worthwhile charity. The runtook place on Saturday 6th September2008. There was also a 3k run forchildren, with Corrie, Robbie, Mathew,Holly, Kelly and Sarah (Molly’sgrandchildren) helping to raise furtherfunds. In total we raised £366.

The Three Peaks Challenge 2008Mathew Piper scaled the 3 peaks ofScafell, Ben Nevis and Snowdon allwithin 24 hours to raise £250 for theSMT. The highest mountains inEngland (Scafell Pike: 978m), Scotland(Ben Nevis: 1344m) and Wales(Snowdon: 1085m) are all part of theThree Peaks Challenge. Each mountainneeds to be climbed and equipmenttransported from one hill to the next(some 450miles) – all in 24hours.Mathew’s achievement was only madepossible by his father, Bill, driving himbetween each peak. Mathew’s fatherhas a strong link with the SMT.

Anna’s charity eventFor my 40th birthday I decided to helpthe SMT by holding a fundraisingevening. I held the evening because myfather, seen in the middle of thephotograph, has been diagnosed with

MSA-C [MSA with predominantlycerebella features] and we thought that

this was a great way of providing fundsfor the Trust, while also raisingawareness of MSA. Some donationswere also sent on-line. We all managedto have a great time at the party, withmy father particularly enjoying theevening. My daughter circulated aroundthe guests selling children’s candysticks (as candy cigarettes are nowcalled) and got into a bidding war forthe final packet, which was eventuallysold for £5.00! Over £720 was raised,in total.

Anna and her family

The junior 3k run

The Lyke Wake Walk Challenge

I completed the Lyke Wake Walk on 7th July. The challenge was to complete

a 40 mile walk, from Ravenscar to Osmotherley on the high North Yorkshire

Moors, in less than 24 hours. I began my walk at 04:20hrs and finished at

22:10hrs. This achievement enabled me to raise £920 for the Sarah Matheson

Trust for Multiple System Atrophy (MSA). My walking partner was George

Fothergill and midway through the challenge, his daughter, Alice, provided

appropriate encouragement during this demanding walk.

I became aware of the SMT through a mutual friend and set about obtaining

sponsorship for the walk. MSA is a progressive, degenerative and adult

neurological disorder, which causes problems with movement, balance and

automatic functions. Members of the SMT have emphasized that without

the support and guidance of the Trust’s specialist nurses they would be lost

during difficult times.

John Barter

Nick Bunt, SMT Trustee, receiving John’s cheque


SMarT News – The newsletter of the Sarah Matheson Trust

Fundraising

� Fred Amor� Angelo Avino� Alfred Barber� Manuel Bautista� Rose Blackham� Olive Bourne� Paula Brett� Bob Burges� Nora Calder� Malcolm Campbell� Joseph Carroll (2007)� Joan Cole� Adrian Cook� Ron Dobson

� Ina Dolan� Stanley Edwards (2007)� Audrey Ellard� B.M. Etheridge� John Fowler� Paul Francesconi� John Gooch� Joan Hulse� Patricia Hunter� Pauline Johnstone� David Jones (2007)� Eirlys Jones� George Lamb� Lyn Landrick

� Trevor Layton� Donald MacInnes� Tony McGuire� Betty Mutch� Catherine Notman� Michael Nicol� Pat Perry� Harry Platt� Tom Quigley� Margaret Read� Muriel Reed� Brian Reilly (2007)� David Rigby� Jageet Riyat

In Memory for 2008This edition of SMarT News will cover the period till 15th January 2009. If you have informed theSMT of a loved one’s death and he or she does not appear below, please accept our apologies(we can always rectify this in a later edition). Some members passed away earlier than 2008 andthese have the corresponding year in brackets.

� Harry Richardson� Margaret Rollason� Yvonne Schmid� Shirley Sharples� Marie Sheedy� William Shine� Dr Paul Sibley� Mary Slocombe� Susan Smith� Michael Street� Nick Sullivan� Kenneth Taylor� John Turner� Reggie Wallace� Kathleen Warren� Barry Walters� Amy Wells� Margaret Williams� Beryl Winterton (2007)

The Trust has produced an A3 size MSA/SMTposter for anyone wishing to use it for fundraising.We send them out in protective cardboard tubes. Theposters have been welcomed by those who haverequested a display that describes MSAand the workof the Trust. Please feel free to phone the office, ifyou would like one: 020 7886 1520.

...and don’t forget theboxes and badges

Posters for fundraising events


News


Mr Diston purchased a TobyChurchill Lightwriter for his wifethree years ago. Mr Diston states thatthe Lightwriter was of “immensevalue to my wife when she first hadproblems with her speech”. However,the Lightwriter is no longer required.Mr Diston was so impressed with the

Lightwriter that he wanted to loan it toothers and has most generouslydonated it to the Trust for free. TheLightwriter has been serviced and isnow being used by another SMTMember. If anyone is interested in aloan of the Lightwriter, please contactthe office.

Lightwriter donation

The selling of Christmas cards for2008 went really well.

We sold out with theremaining sets of cardsfrom the last 2 years alsobeing sold! Altogether wesold 645 packs, whichequates to 6,450 cards.Thank you to all whobought the cards. We would also like totake this opportunity to say sorry to allthose who missed out – we will print agreater number to be available nextChristmas. We will also advertise themon the SMT website when they areready to be ordered.

Professor Clare Fowler, Chairman ofthe SMT Medical Research

Advisory Panel, has reviewed a DVDon the life experiences of SophieDohm, a woman who was diagnosedwith MSA. In the DVD Sophie asks thebig questions which all those with MSAmost ponder: “what is this disease?”,“where did it come from?” and “whyme”?The middle of the film focuses on

Sophie’s efforts to assist with MSAresearch and in particular to increasepublic awareness of the disorder. Thefilm ends by emphasising the vitalimportance of support that can begained from family and friends. Indeed,the depth of feeling amongst theparticipants of the film is quiteapparent.The often sad film shares Sophie’s

experience of MSA, with the hope thatthrough the filming, those with thedisorder and their family may feel less

Sophie's Search for a Curealone and be able to relatecathartically to the experiencesdescribed. So, what are thepositives to be had fromwatching this film? Well, itdemonstrates that there is anactive concern for finding acure for MSA in patientcommunities and that Sophiefound contact with otherpeople who have thecondition, in person andthrough the internet, mostsupportive. Importantly,Sophie highlights that onlythrough medical research arewe ever likely to gain theanswers to those big MSAtype questions. Sadly,Sophie died in 2007.Copies of the DVD are

available for US$10 plus $4 postagefrom Jim Likowski at Rainlight Films.It is best to e-mail him with your

SMT christmascards sell out

request at: [email protected] orwrite to: Rainlight Films, PO Box410, Coloma, CA 95613, USA.www.rainlightfilms.comPlease note: this is a highly emotionaldocumentary which some membersmay find unsettling.


Letters


people take for granted such as walking,sitting correctly, standing and generalmovements. He was also assisted withhis fine motor skills to help withhandwriting and getting dressed. Itenabled him to become more mobileand improve his self esteem greatly. Ithought I would share my experienceswith your members. I can be contactedon: [email protected].

Sue Sullivan

Dear Sue, thank you for sharing your

experiences with the SMT. We will

look further into Conductive

Education to ascertain its usefulness

to our members.

We welcome letters that share newsand experiences from all ourmembers. We will publish as manyas space permits in each issue ofSMarT News.

Dear SMT Nurses,When my husband Nick was firstdiagnosed with MSA, I was constantlylooking for anything that would assisthim and would make life easier for himand his condition. My daughter whoworks with children with Cerebral Palsy(The Hornsey Trust, Muswell Hill)suggested that Conductive Educationwould be beneficial. [Please note: anytherapy, such as Conductive

Education, should not replace

individual assessment and treatment

by an appropriate specialist.]

Conductive Education is a form of

special education and rehabilitation forchildren and adults with motordisorders. It can be used for conditionswhere disease or damage to the centralnervous system affects a person's abilityfor control of movement. There is anAdult Specialist Centre in Birmingham,with training taking 4 years; it isaffiliated to Wolverhampton University.I contacted the centre in

Birmingham and was offered 17 freemorning sessions. I felt this was themost helpful activity in improving hismobility. He was given strategies tohelp with day-to-day activities that

Can Conductive Education help?

Talking and thinking about braindonation inevitably leads us to considerour own mortality. Understandably,some participants reported these asdifficult issues to contemplate andparticularly to broach with loved ones.However, my research suggests thatasking people to consider making abrain donation not only raisesawareness, but more importantly givespotential donors and families theopportunity to come to a considereddecision, whatever that may be, with thebenefit of accurate information, timeand support.

Clare HarrisResearch NurseUniversity of Aberdeen

ReferencesTaylor, K. et al (2006) Pilot Study of theIncidence and Prognosis of DegenerativeParkinsonian Disorders in Aberdeen, UnitedKingdom: Methods and Preliminary Results.Movement Disorders; 21(7), 976-82.

Dear SMT,I read your recent article on “MSA andthe Brain Bank” with interest, havingrecently completed a qualitative study aspart of my MSc in Nursing. My studyaimed to identify and explore the factorsthat influenced people’s decisions whenthey were asked to think about agreeingto brain donation for research. I wouldlike to share some of the findings arisingfrom the research with your readers.While there has been much in the

news recently about increasing thesupply of organs fortransplantation, very fewparticipants I interviewedhad been aware of the needfor organs to furtherresearch, before the subjecthad been raised with them.All participants, regardlessof whether they had agreedto brain donation or not, feltthat making a brain donationwas worthwhile, with manyexpressing an altruistic desireto do something that wouldbenefit those coming afterthem.

An influential factor for manyparticipants was being made aware ofthe need for brain tissue to furtherresearch and being asked to considerbrain donation, providing the catalystthat translated into a desire andwillingness to help others. Interestingly,among those who supported the idea ofbrain donation for research, the mostfrequently cited factor significant totheir ultimate decision was having thesupport of their families.

Donating to the Brain Bank


16

Information, Support, Education andResearch in Multiple System Atrophyand other autonomic disorders.

Providing services to people with MSA,families, carers and professionals.

� Information leaflets and newsletters� Specialist nurses� Telephone advice line� Regional support meetings� Training and education sessions� MSA research� Communication Aid Loans� Welfare Gift Scheme

Patrons:Sir Roger Bannister CBE FRCPProfessor CJ Mathias DPhil DSc FRCP

Trustees:Nicolas BuntMrs Robin BrackenburyMichael EvansValentine FlemingMs Darcy HareAlexander LoehnisMrs Ann McLennanGeoffrey MurrayEileen Lady Strathnaver OBELady Harriot Tennant

SMarT News Editor:Lee Potiphar PhD RN

All correspondence andenquiries to:Sarah Matheson TrustBox 200St Mary’s HospitalPraed StreetLondon W2 1NY020 7886 1520020 7886 1540 (fax)

www.msaweb.co.uk

The Trust is financed entirely byvoluntary donations.

Registered Charity Number 1062308

Designed,laidoutandprintedbyINQDesign.CallMartinon02086888773

Current MSA members 810Other patient members 39Relatives and carers 440Professionals 1487Others 161

Membership Numbersas of January 2009

Become a regular donorDonations by monthly or annual direct debit. Regardless of size, all donationshelp us maintain and improve upon our services. Don’t forget to Gift Aid anydonations to increase the value of the donation generously given.

Become a fundraiserEvents such as coffee mornings, car boot sales and a wide variety of sponsorshipopportunities bring the SMT valuable income every year. New ideas are alwayswelcome.

Use our online fundraising/donation facilityWe have the facility for you to use an online fundraising package on:www.justgiving.com. This facility can be used for anything from a personal occasionto the dedication of a person’s life.

Contribute to SMarT NewsSharing your experiences and tips with other members helps keep it your newsletter.

Form a local SMT groupLink with the SMT office and independently run a group to provide local groupsupport.

Raise awareness about MSAShare our information with family, friends and the health professionals you meet.

Don’t forget: the SMT is your charity.

Gift Aid It!Did you know that if you are a UK tax payer, we can increase the value of anydonations made to the SMT. This Gift Aid could raise the SMT’s income by as muchas £20,000 extra per year. We have Gift Aid forms available at the SMT office.

All articles aim to provide as much information as possible. However, sincesome information involves personal judgement, their publication does not

mean the Sarah Matheson Trust necessarily endorses them.

Ways to support the SMTand help the Trust grow

Next issueI have thoroughly enjoyed writing the last 3 newsletters. I have been particularlyimpressed by the tremendous efforts people have put into fundraising for theTrust. The Trust only exists because of the continued fundraising efforts and kind

donations of our members.

The next edition (issue 25) is planned for posting to you in June 2009. If applicable,please provide articles by 15th May 2009. All articles received after this date will

appear in the following edition (issue 26).

Lee Potiphar SMT Nurse and Editor


MSA News (issue 24)

Documents

Transcript of MSA News (issue 24)