Newsletter 28 - Different Strokes

NEWSLETTER NO 28 TEL: 0845 130 7172FAX: 01908 313 501Registered Charity No: 10921689 Canon Harnett Court, Wolverton MillMilton Keynes, MK12 5NFChristina Meacham started as the new Chief Executive forDifferent Strokes on 6th June 2005Hello to all of you at DifferentStrokes! I have been working inmental health for the past 10 years orso, although my main interest is inpsychology and neurology, so I feelthat Different Strokes is an excellentplace for me to be! I have not had astroke myself, but my mother had astroke at the age of 45, so I do havesome direct experience of theproblems of stroke survivors. I am alsomarried to someonewith MS who wasthought for quite awhile to have had as t r o k e a s h i ssymptoms are verysimilar. I am keen tolearn as much aspossible about thedifferent and uniqueproblems which comewith every stroke, andI look forward tob r o a d e n i n g m ye x p e r i e n c e a n dexpertise as I meetmore and more Different Strokes usersand contributors.I originally trained as a musician manyyears ago (before doing a degree inpsychology and a masters in socialpolicy) and still play oboe and viola forfun in my spare time (I also stuff asaxophone into my mouth twice a yearand try to persuade myself that I canplay with a big band. But perhaps theless said about that, the better. Justwatch this space for a fundraisingdinner dance provisionally planned for2006 featuring a certain back-desksaxophonist……!I have two main objectives for my first6 months: to raise money so that wecan continue the services we alreadyprovide and develop new services forstroke survivors; and to raise theprofile of the charity and ofthe problems suffered byyounger people who haveInside this issue:experienced stroke. I alsohave a personal aim toDESTROY the idiot idearepeated bysome medicalprofessionalsthat recoveryInformationProfileNutrition2/34/56takes place Brain Injury 7only in thefirst 6 months Parachute 8after stroke.There are lots News 9and lots ofDS members Miscellaneouswho can10/11demonstrate Help and 12how stupid feedbackthis idea is,and who Conference 13continue to make goodprogress 10 years or more Regional 14/15after their stroke. I am a Newsgreat believer that our ownClasses and 16d e v e l o p m e n t s a n d Contactsachievements are increasedor limited by what we expect forourselves (and what others expect forus can help, too!).If you have visited our internetmessage board recently you may havenoticed that I am keen to include aglossary of stroke related terms asdefined by Different Strokes’ users.I am hoping that people will includeAugust 2005

Information 2(Continued from page 1)their own definitions (which can behumorous or individual) in order to sharetheir own knowledge with others. Whilstwe’ll have a disclaimer at the top of theglossary stating that the terms are individualdefinitions, not necessarily endorsed byDifferent Strokes, we’ll obviously have toreview definitions here at the office to‘negotiate’ with the writers on any definitionswhich we feel might be risky. (Guideline: tocall your consultant a chocolate teapot is aninformative and entertaining personal view;to call your consultant a chocolate teapotwhose advice should not be followed underany circumstances would result in an emailexplaining why we can’t include thatdefinition as it stands…..) Please do emailor post me any definitions of technical termsthat you can come up with!If you want to email me about this, or anyo t h e r m a t t e r , m y e m a i l i s :christina@differentstrokes.co.uk.Now is probably a good time to buttonholeme, as my diary is still controllable (just!)and so I have more time to respond than Iprobably ever will again!Best regards to all readers, survivors andcarers – I look forward to meeting many ofyou in person as I get round the country tosee what is going on, and what we candevelop to take our work forward and findnew ways of helping each other.ChristinaA treatment normally given to haemophiliacscan reduce stroke deaths from bleeding in thebrain by almost 40%, it was revealed.Long term disability was also greatly reduced bytreating patients with the Factor VII clotting agent.The therapy is normally used to prevent excessivebleeding by haemophiliacs whose blood does notclot properly.Researchers in 20 countries tested the treatment onabout 300 patients with intracerebral haemorrhage(ICH), the deadliest form of stroke. It occurs whenblood vessels rupture inside the brain, spilling theircontents into the surrounding tissue. More than oneout of three ICH victims die within a month andonly 20% regain functional independence.Dr Stephan Mayer, from Columbia University,New York city, who led the research, said: "Iapproached this study with modest expectations,expecting to see some trends toward improvedoutcomes. I was stunned to find that by preventingjust 5ml of additional blood - about one teaspoon -of bleeding in the brain, we were able to increasechances of patient survival by nearly 40%. Currentdata suggest a possible change in our paradigm forthe treatment of ICH."Varying doses of recombinant activated Factor VII(rVIIa) were given to 280 stroke patients. TheyClotting agent 'cuts stroke deaths'were compared with 96 others who received adummy placebo treatment. All had a CT scan toconfirm that they had an intracerebral stroke withinthree hours of becoming ill.After the treatment, the scan was used to check thesize of bleeding in the brain within the first dayand again three days later.Overall, Factor VII-treated patients suffered abouthalf as much additional bleeding in the brain asplacebo-treated patients. After 90 days death ratesamong the treated patients fell by 38%. Comparedwith the placebo group, up to three times more ofthem survived with no major neurologicalproblems.A total of 24% of patients on the highest dose ofrVIIa remained free of disability compared withjust 8% of those taking the fake treatment.For about every six patients treated, one case ofdeath or severe disability was avoided. Blockedarteries caused by clots occurred 5% morefrequently among the treated patients, but did notresult in more deaths or disability.The research appears in the New England Journalof Medicine. Each year, 130,000 people in Englandand Wales have a stroke and 60,000 die from thecondition. Strokes account for the deaths of 8% ofmen in England and 13% of men.

3InformationNICE issues guidance on the use of “clot-busters” in the prevention ofheart attacks and strokesThe National Institute for Health and ClinicalExcellence (NICE) has today issued guidance onthe use of two “clot-busting” drugs calledclopidogrel and modified-release (MR)dipyridamole for the prevention of strokes andheart attacks. NICE has recommended that peoplewho have previously had a stroke or heart attack,or who have been diagnosed with a conditioncalled symptomatic peripheral arterial disease(PAD), which puts them at high risk of stroke orheart attack, should use these drugs in certaincircumstances: . MR dipyridamole in combination withaspirin should be used as part of theprevention of stoke or heart attack in peoplewho have had a stroke for a period of twoyears from the most recent event.. .After 2 years, or if the patient can’t tolerateMR dipyridamole, treatment should revertto standard care (including long-termtreatment with low-dose aspirin).Clopidogrel should be used on its own(within its license) for people who can’ttake low-dose aspirin and have eitherexperienced a stroke or heart attack or havesymptomatic peripheral arterial disease.Strokes and heart attacks occur when a bloodvessel becomes blocked, usually as a result of abuild-up of fatty deposit on the wall of the artery(called atherosclerosis) and the flow of bloodthrough it is restricted. When an area of fattydeposit breaks off in one of the arteries, a chainof events is set off that can lead to blood clotsforming and blocking the already narrowedartery. If the blood supply to the brain is affected,the result can be a stroke (either an ischaemicstroke if it happens for more than 24 hours, or atransient ischaemic attack (TIA) if it happens fora shorter time). If the blood supply to the heart isaffected, a hear attack (or myocardial infarction -MI) can result.PAD is caused by a narrowing of the arteries inthe arms or legs and people with PAD are at highrisk of heart attack or stroke. People with PADmay not show any symptoms of the disease, butare often diagnosed with the disease after seeingtheir doctor because they experience pain whenthey walk.Clopidogrel and MR dipyridamole work bypreventing the formation of blood clots in thearteries. In England and Wales, it is estimatedthat each year 102,000 people are diagnosed withPAD and there are140,000 new cases of stroke.The annual number of MIs has been estimated tobe around 237,000. Stroke and MI are associatedwith a high morbidity and mortality. Some 30%of people die from their first MI. After a stroke,approximately 23% of people die within 30 daysand the overall 3 year survival rate is only 30-40%. Stroke is also the leading cause of disabilityin the UK, with about 25-30% of stroke survivorsremaining permanently disabled.Professor Peter Littlejohns, NICE Clinical andPublic Health Director and Executive Lead said:"We know that heart attacks and strokes are someof the biggest killers and causes of disability inEngland and Wales and that people who have hadone heart attack or stroke are at a greater risk ofhaving another. Therefore it is important thatthese patients receive treatments that can help toprevent further illness. Today’s guidancerecommending the use of clopidogrel and MRdipyridamole where clinically appropriate has thepotential to have asignificant impacton the treatmentof hundreds ofthousands ofp a t i e n t s , i nE n g l a nd a n dWales.”25th May 2005

ProfileMy daughter Erin had a strokewhen she was just 15 months old,and the best medicine proved to beher little sister Sofie. As Erin layparalysed down her right side andunable to walk, sit up or talk, it wasSofie who came to her rescue.When Sofie tried to crawl, Erinwould try to copy her and whenSofie started walking at 12months, Erin tried to follow her too.When Sofie started to talk, shew h i s p e r e d w o r d s o fencouragement to her older sisterand helped her wobble to her feetand walk with her. Now the girlsare closer than ever. Sofie is aboutto turn three and Erin, now agedfour, has made an almost fullrecovery – thanks largely to thelove and dedication of her sister.It really is amazing to see themtogether, Erin has made such awonderful recovery and it’s allthanks to Sofie. She couldn’t havedone it without her. It’s funny tosee Sofie helping Erin to go out inthe garden – it should be the otherway round. Their sisterly bond is sostrong – and it has proved to beErin’s saviour. Erin’s problemsbegan soon after her birth inJanuary 2001, when doctorsdiscovered she had a hole in herheart that was increasing theamount of blood flowing to herlungs.4When she was nine weeks old, shebecame increasingly breathlessand was admitted to hospital with arespiratory tract infection. A fewmonths later she had an operationto have a device fitted to plug thehole.Just before Erin’s operation Idiscovered I was pregnant again,with Sofie. At the time I thought itwas bad timing – but looking back,it must have been fate. After Erinhad her operation, she came on inleaps and bounds – it was asthough she had been given a newlease of life. But when I was sevenmonths pregnant, Erin was struckby misfortune again. She caughtchickenpox and was extremely ill.She was taken to hospital and puton a drip to rehydrate her. Afterseveral days in hospital she startedto moan loudly and her eyesstarted rolling around.The doctors said she’d had astroke. It was terrible to see herlying there motionless – she wasjust 15 months old and so tiny. Icouldn’t believe that someone soyoung had suffered such a terriblething as a stroke. Doctors later toldus that she had a blood infection –probably linked to the chickenpoxand the surgery she had had –

5which had caused the stroke.Erin was taken by air ambulance toSouthampton General Hospitalwhere doctors gave her paralysingdrugs as they feared that the stroke– which had caused a brainabscess – might cause damage toher brain. We just sat by herbedside, willing her to get better.Then, miraculously, after four daysshe started to turn a corner. Shewas taken offthe ventilatorand movedi n t o ac h i l d r e n ’ sward. Twomonths afterErin’s stroke,in May 2002, Iwas at Erin’sbedside whenI realised I was in labour, and wasrushed to the maternity unit to givebirth to Sofie. Sofie was allowedhome after a week, and Erin camehome two weeks later. It was sowonderful to have both our girlshome together after everything thatErin had been through.Erin was still partially paralyseddown her right side and she couldno longer walk or sit up. Shecouldn’t talk properly and when shetried to smile it was lopsided. Butamazingly as Sofie began to crawlProfileand walk, she encouraged Erin tocopy her. It was as though she wastrying to keep up with Sofie. AsSofie crawled along, Erin would pullherself behind, using her left arm.Then as Sofie started to walk, Erinwould pull herself up and lean onSofie as they wobbled across thefloor. When Sofie started to talk,she would encourage Erin to comeout in the garden with her and grabhold of her hand to support her.Over the last 12months Erin hasmade tremendousprogress. She cannow walk around justlike her sister andboth of them runaround the garden attheir home. It isremarkable to see.Erin lost some of the sight in herright eye after the stroke and shecan’t use her right hand as well asshe used to, but it doesn’t affecther. She and Sofie chat away toeach other – she is a few monthsbehind with her speech but she iscatching up every day. No onewould ever guess that she hadsuffered a stroke. To see themlaughing and playing together isnothing short of a miracle – and wehave Sofie to thank for it.Bernice Evershed

Nutrition 6People with heart disease who stick to aso-called Mediterranean diet -- heavy onfish and vegetables, and low on saturatedfats -- tend to live longer than those whofollow different diets, new researchsuggests.Investigators based in Greece and the U.S.found that, among a group of more than1,300 men and women diagnosed with heartdisease, those who ate a moreMediterranean diet were nearly 30 percentless likely to die during follow up, whichlasted close to four years.Based on these findings, leadingauthor Dr. Antonia Trichopoulou atthe Athens Medical School and atHarvard University in Boston, toldReuters Health that she would"absolutely" recommend aMediterranean diet for everybodydiagnosed with heart disease.A Mediterranean-style diet is richin fruits, vegetables, grains and nuts. Itincludes few saturated fats like the ones inred meat but plenty of healthier fatty acidslike those found in olive oil. It also featuresmoderate amounts of red wine.Recently, research has shown that followingthis diet can provide a range of healthbenefits, including a lower risk of heartdisease, arthritis, cancer and age-relatedmemory loss.Recently, Trichopoulou and her teamobserved that following a Mediterraneanstylediet appears to reduce the risk of deathBEST TO EAT LIKE THE GREEKSamong people free of heart disease.As part of the current study, the researchersfollowed 1,302 Greek men and women fornearly four years, noting what they ate. Allwere diagnosed with heart disease.The researchers scored how closely peoplefollowed the Mediterranean diet using a 10-point scale, with a higher score indicating ahigher adherence to the diet.Reporting in the Archives of InternalMedicine, the investigators found that forevery 2 point increase in diet scores, the riskof dying decreased by 27 percent.No one ingredient of theMediterranean diet appeared tohave the biggest impact on health,the researchers note. This findingsuggests that the Mediterraneanstylediet is an "integral entity,"Trichopoulou noted. "The total ismuch more than the constituents,"she explained.The Mediterranean diet, Trichopoulou said,likely helps people live longer with heartdisease for the same reason the dietappears to help prevent heart disease in thefirst place -- by improving cholesterol andblood pressure, for instance."There is also speculation that the traditionalMediterranean foods may containunidentified compounds with healthpromoting potential," she added.SOURCE: Archives of Internal Medicine,April 25, 2005.EAT TO WIN (Mens fitness magazine March 2005)1. Broccoli 2. Kiwi fruit 3. Bananas 4. Mackerel5. Garlic6. Tomatoes7. Green tea8. Almonds9. Olive oil10. Honey

7Brain InjuryWhen a Parent has a Brain InjuryThe booklet discusses the needs,experiences, fears and concerns ofadolescents and young adults when aparent has a brain injury. Coverspreparing sons and daughters tovisit a parent in the hospital.Describes their reactions tophysical, cognitive, communicativeand behavioural changes in a parent.Talks about changes in life at home,reactions of friends andrelationships among familymembers. Cost £5.00Tel: 01869 324339www.acquire.org.ukIndependence, well-being and choice: ourvision for the future of social care for adults inEnglandThis Green Paper sets out a vision for adult socialcare over the next 10 to 15 years and how thismight be realised. It invites everyone to give theirviews on the vision and the ideas set out in thedocument, as well as to contribute new ideas tothe debate.The Green Paper is intended to provokediscussion on: how we can offer more control, morechoice and high-quality support for thosewho use care services; how we can harness the capacity of thewhole community, so that everyone hasaccess to the full range of universalservices and an opportunity to play a fullpart in society; and how we can improve the skills and statusof the workforce to deliver the vision.Published: 21 March 2005www.dh.gov.ukMy Dad‛s had a brain injuryThis booklet gives information and adviceto help you find out what happens whensomeone has a brain injury. It‛s takes thechild through the path the parent mighttake through the hospital at differentstages of treatment. It also addressesthe emotional response to the injury of asignificant other in the child‛s life,assuring the young person that they arenot alone in having these feelings. Copiesare available cost £4.Tel: 0808 8002244www.headway.org.ukMORE OF MURPHY‛S LAWS*1. Nothing is as easy as it looks.2. Everything takes longer than you think.3. Every solution breeds new problems.4. If there is a possibility of several things goingwrong, the one that will cause the most damage willbe the one to go wrong. Corollary: If there is a worsetime for something to go wrong, it will happen then.5. If anything simply cannot go wrong, it will anyway.6. If you perceive that there are four possible waysin which a procedure can go wrong, and circumventthese, then a fifth way, unprepared for, will promptlydevelop.*Murphy himself ensured that this list appearsbefore the appeal to which it refers……. (see page 12)DO YOU HAVE ANY MORE LAWS, OR HUMOUR FORTHE NEWSLETTER? Post to the office, or email tonewsletter@differentstrokes.co.uk

Parachute jump 8In October 2004 I attempted a parachute jump butwas cruelly thwarted by the wonderful UKweather! Many generous people sponsored me inmy efforts to raise money for Different Strokes; myaim was to raise badly needed funds for theorganisation but also to mark the fifth anniversaryof this cruel and devastating illness. I wasdisappointed (relieved!) that I was unable to do thejump, once up there … 13,000 feet and sitting bythe open door I realised just how scary theprospect was, but I’d made a promise, and apromise is a promise. However, I did eventuallyget to jump, and this is how it happened.I am currently doing voluntarywork in South Africa, which ishard both physically andemotionally, so volunteersare inclined to play as hardas we work—me included!One night shortly after myarrival, the other volunteersintroduced me to Flashbacksbar where I met a 6’3” dropdead gorgeous hunk calledJimbob, who turned out to bea parachute trainer andqualified tandem jumper, andby the time we partedcompany that night I’dagreed to let him give me thebest experience of my life.Weeks went by and anythoughts of parachuting wereforgotten as the work tookover and kept my days filled.Then one day I received anearly call from Jimbob to tellme conditions were perfectand he was on his way over to get me, todaywould be the day I would kiss the sky. I felt itwould be churlish to feign a headache so I quicklygrabbed a jersey and tried to eat somebreakfast—I didn’t want to die on an emptystomach!We arrived at the airstrip and I was introduced toour pilot—he didn’t look more than sixteen—and Ilooked in dismay at what we were about to fly in.On my last attempt I thought the plane was tinybut this one would only hold five people includingthe pilot, and the only way we could fit in was bysitting on each other’s knees.We flew for 30 minutes over the coast, my nervesdiminished as we flew low over schools ofdolphins, hammerhead sharks and whales, theview was spectacular and I found myself hangingout of the doorway running off reel after reel offilm.We climbed to 10,000 feet, and I felt my safetystraps being tightened in preparation, I was told toput my feet on a little step outside the plane, then Iwas gone—Jimbob and I somersaulted out of theplane and we were flying, plummeting freefall at125mph, but it felt slow and quiet and I felt I was inheaven. Jimbob was right—it was the bestexperience of my life.POLLY FELL FROM THE SKY!After 35 seconds thatfelt like hours theparachute floweredabove us and webegan riding the sky,arms outstretched andwhooping with delight,all sense of time wasgone as we twisted andturned and flewtogether on an airstream. Jimbobloosened my strapsand removed mygoggles so I could getthe full effect—the windin your hair will foreverhave a differentmeaning for me.All too soon the groundwas rushing towards usand I became awareagain of the weight ofmy body. The landingwas smooth as we bothregained our feet and I found the feeling of earthunder my feet an unwelcome sensation after theweightlessness in the sky.With many thanks to Polly for raising£1,615 for Different Strokes.I stayed charged with adrenalin for at least24hours after; everytime I thought of the jumpevery fibre in my body would soar, I wanted to bein the air again, and I realised with dismay thatafter just one hit I had become addicted.I know I will continue to jump when I return to theUK, but there they don’t have the laid back attitudethat is prevalent here, codes are strict and I will beencased in a flying suit and safety helmet, so Imay never get the chance to feel the wind in myhair again.

9In August 2000, Erwin von Allmen(who is generally known as ‘von’) hada stroke which left him aphasic andunable to read. The loss of readingability was a devastating experiencefor someone who was a voraciousreader. Two years later, von and hissister, Lois V. Smith, developed asystem using a combination ofunabridged tapes and books that hasenabled him to read books again.He uses a simple cassette taperecorder: a table top model whichhas large buttons, and can be easilyused by people with only onefunctional hand. Cassette taperecorders are becoming more difficultto find in this age of CD’s, but theyare still available: a quick search onthe internet produced the PanasonicRQ 2102, retailing at £29 post free,or Currys advertise a RobertsRC9907 at £29.99 (If the personrecording the books needs aseparate machine, the von Allmensfeel that it is advisable to use 2identical machines for recording andplayback, so you may need to buy 2the same.) This sort of tape recordercan be easily moved around.The von Allmens colour-coded thebuttons with small stickers glued onwith rubber cement: green for go, redfor stop, blue for rewind, and yellowfor pause.Von found that he could not useearphones because of his aphasia.Many friends had suggested thatrecorded books might be stimulatingfor him, but he found that hisconcentration difficulties meant thathe forgot each sentence as the nextwas read. However, von and hissister decided to experiment with aspecially recorded edition of ‘TheEndurance: Shackleton’s LegendaryExpedition’ by C Alexander.Originally, Lois made some complexsentences more simple whenrecording, but von found that it wasimportant that the recorded textmatch the written text perfectly.The von Allmens made sure thatLois, who read the book, and von,who listened to it, had identicaleditions of the volume. Lois recordedthe book, reading at a very slowspeed. She occasionally interruptedher reading of the story to indicatethe end of a paragraph, chapter orpage. She provided somephotocopies of key pages andindicated in the text when she hadreached a certain point: von (whofollowed the text as he listened to thetape being played back) was thenable to turn to the photocopies andcheck that he was at the right point inthe text, re-orienting himself if(Continued on page 10)NewsA NEW SYSTEM FOR RECOVERINGREADING AFTER STROKE

(Continued from page 9)Miscellaneousnecessary. A partner is helpful inthe initial stages of trying thissystem, to assist with learning touse buttons on the tape recorder,page turning, and other mechanicalissues. After several weeks, vonreported ‘I can do those things!’ andfrom that point he gainedconfidence in his ability to regainreading skills. After 6 months hewas able to read and understandshort pieces of the daily paperwithout audio prompts.After this first book, von triedabridged versions of other books.These were far less successful: itseems that it is essential that thetape and the book are identical,without any sections being left out.Other friends trying the von Allmens’system have used commercial(unabridged) recordings of bookssuccessfully (it seems that thesepeople were able to cope withslightly faster readings of the booksthan the initial slow recording doneby Lois.)The von Allmens feel that therehave been other positive benefitsfrom this system. Listening to audiobooks have sharpened von’slistening skills, so that he can copebetter with the television and radio.The system has also been writtenup in newspapers, magazines andother newsletters. If you would likethis extra information, we havesome details at the office (pleasesend a donation to cover ourcopying and postage costs whenrequesting these, if you can affordit!)THANK YOU to von, Lois, andCarolyn (von’s wife) for being happyto share the techniques andbenefits of this system with DifferentStrokes. Do YOU have anytechniques that have helped yourrecovery and you could share withothers?PLEASE LET US KNOW!10Stroke patients are not treated quickly enough (Adrian O'Dowd)The NHS needs an increase of 400-500% in the number of stroke specialists to improvestroke care to acceptable standards, it has been claimed. The National Sentinel Stroke Audit2004, published this week, found that standards of stroke care had undergone "dramaticimprovement" in recent years but that huge problems remained.While praising improvements since the last audit, the report also found examples of‘lamentable care.’ It said:• On a typical weekday, just more than half of stroke inpatients were in a stroke unit• More than 40% of patients were not given a scan within 24 hours of admission• Only two thirds of patients were started on aspirin within 48 hours as a way of reducingmortality and disability.

11Sun ProtectionAs we experience a sustained hot spell in theUK, it may be helpful to repeat a sunburnwarning for stroke survivors. If your strokewas caused by a blood clot, you are probablytaking some form of long-termanticoagulationmedicine such aswarfarin, or aherbally activesubstance suchas St John'sWort or aspirin(originally foundin willow bark).All of theseincrease yourpropensity forsunburn, so you may want to reserve thatseat in the shade or take extra care with theFactor 50 sunscreen in the next few weeks.MiscellaneousAphasia AllianceThe aim of the Aphasia Alliance is toestablish Aphasia as prominently asAlzheimer‛s.It was agreed at the Aphasia Alliancethat we should have a ‘mediator‛ and a‘promotion/media officer‛.The ‘mediator‛ is a short-term contract(approximately 2/3 months). He/she willvisit all the different organisations(Different Strokes, Connect, Speakabilityetc.) and from information acquired rankthe top Aphasiac priorities.The ‘promotion/media officer‛ is a 2 yearcontract and his/her job is to make thepublic aware of Aphasia through themedia.Penderels TrustMISSION STATEMENTTo enable anyone who requirespersonal care in order to liveindependently achieve their goal.OUR AIMOur aim is to assist service-users withOpening the door to independent livingall aspects of independent living. Thisincludes preparation for an assessment,providing annual cost of care, accessing funding sources e.g. the Independent Living Fund,assisting people to recruit and train their own staff and liaising with other services andprofessionals. Each support package is therefore designed to meet the individual needs ofeach service-user.During the past fifteen years many people have benefited from our support. To date, we haveat some time worked with over 1,000 service users nationally, who are either livingindependently in the community or moving towards this goal.Penderels Trust also advises and supports a variety of other professionals to ensure theyhave the necessary skills and information to advise people on developing their ownindependent living skills. We also offer financial and administrative advice related to therunning of independent living schemes, including an administration service of local authoritymonies and a computerised PAYE service.Contact: www.djthompson.co.uk/ptnew/Jacqueline Lucid or Jean Macdonald on 024 76511611E-mail: jlucid@penderelstrust.org.uk or jmacdonald@penderelstrust.org.uk

Help and feedback12Murphy, as you probably know, is the patron saint of things going wrong. Murphy’sfirst law is ‘if things CAN go wrong, they will’. A later law states ‘If you perceive thatthere are four possible ways in which something can go wrong, and circumventthese, then a fifth way, unprepared for, will promptly develop’.It follows from these laws that if you have made a will, you are FAR less likely to die!(Are you still with me?)Have you made a will? It is genuinely a good idea. While you’re at it, do think ofleaving something to Different Strokes! A selection of small legacies would seriouslyincrease the amount of activities we can develop for stroke survivors.We hope Murphy is alive and well *for the purposes of this appeal (ONLY!) and thatthis short message will result in some legacies which we will not see the results of formany years. The very best of health and recovery to you all.Do you have some ideas of what you would like to see in theNewsletters?Would you like to receive future issues of the Newsletter byemail?If so, send an email to: newsletter@differentstrokes.co.ukWe will look at all ideas for topics we receive.We will put you on the electronic mailing list.If you change your mind in the future we will gladly change your detailsand put you back on the posting list (it saves us money to send by email).Read the Newsletter? Now pass it on so others can read it!Get Newsletter by email already? Forward a copy to friends you think willbe interested in our work.This means YOU are helping also, the more people that know about us,the more people we can help.

13ConferenceDIFFERENT STROKES AGM ANDCONFERENCE 2005The 2005 AGM and conference is provisionally plannedto take place in NEWCASTLE on Saturday 8 th October.The theme will beYOU CAN MAKE THINGS HAPPENThis is a wide theme, and we already have plannedpresentations on legal issues and disability rights.However, YOU can make things happen at thisconference.If you have a way of making things happen, or knowsomeone you think can present on this topic at theconference, please let us know! We are especially keento hear about things which YOU have done which havehelped your recovery (every example ispotentially useful!)This conference will also launch ayear of celebrations forDifferent Strokes’ 10 th birthday!Watch this space and your postbox for more information.

Regional News14Different Strokes on the Isle of WightLast Spring Jeanine, our stroke specialist nurseapproached me to ask if any physiotherapistswould like to be involved running an exercisegroup for a new support group she was helpingto start on the Isle of Wight.Different Strokes was the group and they werewilling to fund our presence every otherMonday.Some of the physios who hadworked on the Stroke unitseemed quite keen so we wentahead. I contacted other(Different Strokes) groupsaround the country to see howthey organised their evening,how much they did and whattype of activities members wereinterested in.Stuart and I have developed theexercise half of the evening, it’sbasically a circuit, rowingmachine, exercise bikes, arecently acquired treadmill,skipping, balance work with balls, weights forupper body strength, in the summer we warmedup by walking or jogging around the building, upand down grass slopes and over rough pathwaysetc.The group has been averaging 10 participantssince last April, down to about six and up to themaximum, which was 18! That evening weneeded eyes in the backs of our heads to keepnote where everyone was.The feedback has been great, mainly increasedconfidence with daily activities and walkingoutdoors and amongst people. Afew people have workedspecifically on their balance andhave noticed tangible gains, ableto stand on one leg or with feettogether touching along midline.It has been great for Stuart & I tosee ex-patients, some we treatedtwo years previously, stillmaking gains, getting on withtheir lives and smiling!If you are thinking of starting anexercise group or reviving one,get in touch with the physios inthe local Stroke Unit, I’m surethey’ll be interested in helpingout; and contact Anne Barby at DifferentStrokes.Neil Oliver & Stuart BrowneSenior Physiotherapists St Mary’s, Isle of WightWrist BandsWe have had so many enquiries from all ages about a ‘Different Strokes’ wristband, as othercharities have used these very successfully. We want to ‘raise awareness’ and to ‘raise funds’ andwe are pleased to say that we have dipped our toe into the water!The wristbands will be a highly collectable limited edition. These will read ‘Different StrokesLimited Edition’ and are HIGHLY desirable to wristband collectors, and to the rest of us!They will be produced in the same light blue as the logo, the limited edition will not exceed 2,500IN TOTAL!The lowest price at which we will sell these is £1 plus 21p for postage: we are hoping that anyonewho can spare a little more will round this amount up to include a donation, as every penny helpsDifferent Strokes to grow, helping us to help others!.We can accept orders now, so check out:www.differentstrokes.co.uk or call: 0845 130 7172

15Regional CoordinatorsREGIONAL COORDINATORS are required to establish, supportand coordinate Different Strokes local groups/exercise classes.Fixed term contract to August 2006. Current vacancies: SouthWest, Greater London, Northern Ireland and Scotland.The person must have: knowledge of issues concerning strokesurvivors knowledge of setting up new projects personal experience or knowledge ofstroke skills in managing a team the ability to project a corporate identity.Responsibilities will include: setting up local exercise groups throughout the area recruitment, induction and management of VolunteerGroup Coordinators arranging and presenting training for Volunteer GroupCoordinators collating local statistical information as required byhead office.If you have these qualities and experience gained from either the statutory orcharity sector, further information and a job description can be obtained fromwww.differentstrokes.co.uk or alternatively contact: Anne Barby at the address onthe front cover, telephone 0845 130 7172, or email:anne@differentstrokes.co.uk.We particularly welcome applications from younger stroke survivors.This is a part time post (7.5 hours per week) to be fulfilled by working from home.Candidates should live within the region* applied for. Salary: £3,198 p.a. (It canbe permissible to earn this amount and still claim incapacity benefit.). Closing date forimmediate vacancies 31 August 2005. Interviews will be held in September .Different Strokes intends to increase thenumber of exercise classes it has currentlyto enable as many people as possible toattend one. To help us achieve this aim, theRegional Coordinators are looking forvolunteers to help run groups in larger townsand cities. They are currently targeting thefollowing areas: Aberystwyth; Antrim;Armagh; Basingstoke; Birmingham; Blackpool;Cambridge; Canterbury; Cardiff; Carlisle;Carmarthen; Coleraine; Doncaster; Edinburgh;Enniskillen; Grimsby; Halifax; Harrogate;Hemel Hempstead; Hereford; Huddersfield;DIFFERENT STROKES NEEDSInverness; Ipswich; Kingston upon Hull;Larne; Leicester; Lincoln; Maidstone;Newry; Nottingham; Omagh; Oxford;Peterborough; St Albans; Stoke on Trent;Telford; Tonbridge; Welwyn Garden City;York.If you would like to help, please contact theRegional Representative in your area usingthe information provided below, or get intouch with Anne Barby, Group DevelopmentManager, on 0845 130 7172, or emailanne@differentstrokes.co.uk, for furtherinformation and a start up pack.REGIONAL REPRESENTATIVESREGION COORDINATOR E-MAIL TEL NO:Anglia Mike Ripley mike@differentstrokes.co.uk 01206 241 100Central Sarah Cooper sarah@differentstrokes.co.uk 0116 210 0868Greater LondonTo be recruitedNorth East Arthur Cookson arthur@differentstrokes.co.uk 0191 271 3141North West Denise Morrice denise@differentstrokes.co.uk 01325 287 296Northern Ireland To be recruitedScotland Kathleen Molloy (temp) kathleen@differentstrokes.co.uk 0141 569 3200South East Karen Bartleet karen@differentstrokes.co.uk 01256 880146South WestTo be recruitedWales Diane Parrish diane@differentstrokes.co.uk 01686 420 365

CLASSES AND CONTACTSREGION COORDINATOR E-MAIL TEL NO:Ayrshire Diane Carlin ayrshire@differentstrokes.co.uk 01560 485 114Bath Helen Tate bath@differentstrokes.co.uk 01225 424 978Banbury Sue Lovelock banbury@differentstrokes.co.uk 01295 750 344Belfast belfast@differentstrokes.co.uk 028 9023 3369Blyth Valley Emma Smart blythvalley@differentstrokes.co.uk 01670 820 294Bournemouth Sonia Hobbs bournemouth@differentstrokes.co.uk 01202 769 950Bradford Jan Bloor bradford@differentstrokes.co.uk 01274 495 442Bristol Geraldine Lambert bristol@differentstrokes.co.uk 01454 881 042Cambridge Paul Huzzey cambridge@differentstrokes.co.uk 01223 356 998Cheltenham Jan Broome cheltenham@differentstrokes.co.uk 01242 583 184Colchester Jim Shield colchester@differentstrokes.co.uk 01376 571 171Coventry Irene Shannon coventry@differentstrokes.co.uk 024 7660 1628Cumbria Jackie Langman cumbria@differentstrokes.co.uk 01539 446 366Forth Valley Jo-an Graham/Davy Black forthvalley@differentstrokes.co.uk 01259 723095Glasgow Kathleen Molloy glasgow@differentstrokes.co.uk 0141 569 3200Havering/Romford Mick O’Shaughnessy havering@differentstrokes.co.uk 01708 765 178Horsham Bonnie Hartley horsham@differentstrokes.co.uk 01403 738 658Isle of Wight Geoff Hemmett isleofwight@differentstrokes.co.uk 01983 882 172Leeds Linda McLean leeds@differentstrokes.co.uk 0113 225 4744Lomond Aileen Murdoch lomond@differentstrokes.co.uk 01389 763 851London Central Jeffy Wong londoncentral@differentstrokes.co.uk 020 7924 9775London East Steve George londoneast@differentstrokes.co.uk 020 8491 7693London North Felicia Kyei londonnorth@differentstrokes.co.uk 020 8493 9218London West Sylvia Smith londonwest@differentstrokes.co.uk 020 8940 5468Maidenhead Terry Hounsom maidenhead@differentstrokes.co.uk 01628 771 968Manchester Janet Powell manchester@differentstrokes.co.uk 01942 879828Middlesex Gerrie Norcross middlesex@differentstrokes.co.uk 020 8361 0247Milton Keynes Miriam Jones miltonkeynes@differentstrokes.co.uk 01908 691 362NE Scotland Sue McNeil/David Jones NEScotland@differentstrokes.co.uk 07958 338 171Newcastle Tommy Allen newcastle@differentstrokes.co.uk 0191 285 6931Newport Louise Brown newport@differentstrokes.co.uk 07776 364 719Northampton Martin & Una Hulbert northampton@differentstrokes.co.uk 01604 671 099North Somerset Bob Watson northsomerset@differentstrokes.co.uk 01275 844 607Plymouth Bob Watson plymouth@differentstrokes.co.uk 01275 844 607Portsmouth Steve Toms portsmouth@differentstrokes.co.uk 023 9225 1204Redhill/Croydon Penny Stevens redhill@differentstrokes.co.uk 01737 779 979Sheffield Amanda North sheffield@differentstrokes.co.uk 0771 577 7786Southend Russell Holt southend@differentstrokes.co.uk 01702 540 008Sussex West Gordon Smith sussexwest@differentstrokes.co.uk 01903 740 055Swansea Bernadette Rosser swansea@differentstrokes,co.uk 01792 203 551Swindon Mike McCaugherty swindon@differentstrokes.co.uk 01793 790 049Windsor Terry Hounsom windsor@differentstrokes.co.uk 01628 771 968Torbay Carole Phillips torbay@differentstrokes.co.uk 01803 299 041Woking David & Edna Balcombe woking@differentstrokes.co.uk 01483 729 291Wycombe Tony Grass wycombe@differentstrokes.co.uk 01494 728 537