The August 2014 edition of The South & West Cornwall Branch of The MS Society of Great Britain

August 2014

The Lifeboat

South & West Cornwall

Branch

Monthly Magazine

I say Sherlock - Are we barking up the wrong tree? Should we really be here? What are we doing? Elementary my dear Watson! All this will be revealed in the results of the South & West Cornwall Branch survey

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Page 9/10 Quiz page Page 11 Read-A-Thon news Youth Group South Page 12 Situations vacant From Nikki Jenkin Message to all carers Page 13 Mixed Feelings by Singletonsmith Page 14 The Indispensable Man Page 15 Sydne’e Teversham’s trip to France Page 16 Youth group Page 17 Concert at Beacon Page 18 Events Page 19 Information page

MS News Page 3 Interesting remyelination results in stem cell study New MS drug Lemtrada now available on NHS Page 4 MS pill Tecfidera available on NHS in England and Wales Government in court over PIP changes Page 5 Thought of the month My Missing Carrot Page 6 The 1940’s night Blind auction results Carers Lunch Page 7 Laona’s recipe Page 8 Adrenalin Quarry Remap Grant applications Judy & Neville reed

Inside the Lifeboat

this month

I must apologise for the page three error in July’s magazine, some of you would have had extra blank pages and all of you had page three missing and two page fives. It was indeed a printer error and I didn’t check them before I put them in their envelopes for posting. Please accept my apology.

MalcolmMalcolmMalcolmMalcolm Who in their right mind would be a

magazine editor

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Chairman’s Report

Editors Note

Hello everyone Well it’s crunch time, with the survey going out in this months magazine, I am quite excited about getting your feedback. We find ourselves at a crossroads where a satnav can’t help us decide what direction to take. The survey is not intended to alarm our members as the branch will always be there for you, however with now having 270 members and only a 7% response to any of our activities we need to know if we are doing things well or is there a drastic need for change. You may be happy with our services and resources and just want to continue with them as they are, or you may want to see changes that would give you a better service. All we are asking is that you tell us, your answers will have an effect on how we run the branch and the services that we offer. Take this opportunity to have your say, if you don’t reply we will assume that you have no interest in the magazine or branch activities, This will be measured on the number of replies received. Please return your survey by the 15th September.

Of course if you require help or advice with your survey I will be pleased to assist. Situations vacantSituations vacantSituations vacantSituations vacant You will see that I have included a situations vacant section in our magazine, there are areas where we can’t have too many Volunteers. If you have the aptitude, skills and commitment and would like to get involved or know someone who would, please contact Mike George 01872 862031 Booking eventsBooking eventsBooking eventsBooking events Don’t forget to book in to our events before the cancellation date, of course you can still book your place after the cancellation date if the event is still running. The reason for the cancellation dates is because these events take time, effort and finances and cancelling events at the last minute incurs costs. On a lighter note can anyone find Jaspers carrot, it’s in the magazine somewhere and I would love to stop him moaning about losing it. Perhaps I will give a prize to the first person to find it.

MMMMaaaallllccccoooollllmmmm

HELLO EVERYONE, I AM TYPING IN CAPITALS BECAUSE THIS MONTHS MAGAZINE, IN MY OPINION, IS THE MOST IMPORTANT OUR BRANCH HAS EVER PRODUCED. In it you will see Malcolm has included a very hard hitting survey which we will expect you to fill out and return in the stamp addressed envelope. Failure to reply will be taken very seriously and nil returns will indicate that there is a lack of interest in our branch and our services. Myself and the committee felt that it was time for a radical over view of what we provide.

We arrange events and so few bother to attend. We offer grants and so few apply. There is no response for you to write articles to put in the magazine. So it is often felt by us, why do we bother? I am still feeling that that rabbit Jasper is mocking me and to that end I hope he doesn't fill in his reply sheet and I can insist that our editor can dispense with his services and give him the boot ! Mike PS I don't think there is included a space in the survey for you to get him evicted , so why not make one for me. PLEASE,

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News from the MS National Centre

Interesting remyelination results in stem cell study

New results have emerged from research into stem cell transplantation in mice, suggesting that injected human stem cells could stimulate remyelination and help to reduce inflammation in the spinal cord. This type of therapy isn’t planned for testing in people, but could help researchers find new ways to repair the myelin damage that occurs in MS. While the results from this study are interesting and encouraging, stem cells in MS are still experimental. It’s important to note that there is no proven stem cell therapy available for MS anywhere in the world. The studyThe studyThe studyThe study Researchers in California carried out an early stage research study which used a mouse model of demyelination to test the effects of stem cell transplantation. When human stem cells were injected into the spinal cord, the mice showed improved motor function when compared to mice that didn’t receive any stem cells. Researchers also observed less inflammation and demyelination in the spinal cord tissue of these mice. New ideas for future researchNew ideas for future researchNew ideas for future researchNew ideas for future research Dr Sorrel Bickley, Research Communications Officer at the MS Society, said: “This is an interesting, early-stage study that’s given scientists new ideas for future research into potential MS therapies.

It’s not currently being planned for testing in people, but it’s a useful avenue for scien-tists to explore – we look forward to seeing how this area of research develops.” This research was carried out at the Scripps Research Institute in California and the University of California, Irvine, and was published in the journal Stem Cell Reports.

New MS drug Lemtrada now available on NHS

The new MS drug Lemtrada (also known as alemtuzumab) has received the final stamp of approval from NICE, and should now be available on the NHS in England and Wales to people with activerelapsing remitting MS. The drug received an initial ‘yes’ from NICE at the start of April, but the decision was subject to an appeal window, which has now ended without any delay. The NHS now has three months to put the necessary measures in place to be able to provide the treatment, meaning that come September, local hospitals have a legal obligation to provide the treatment to patients deemed eligible. Major step forward in MS treatmentMajor step forward in MS treatmentMajor step forward in MS treatmentMajor step forward in MS treatment Nick Rijke, Director for Policy and Research at the MS Society, said: “The NICE approval of Lemtrada is a major step forward in the treatment of people with multiple sclerosis. This drug has taken decades to develop, and while it’s not without risk, it’s proven to be a highly effective medicine for people with relapsing remitting MS. We look forward to seeing it made available to those who could benefit.” Who is eligible for Lemtrada?Who is eligible for Lemtrada?Who is eligible for Lemtrada?Who is eligible for Lemtrada? In May 2014, the National Institute for Health and Care Excellence (NICE) issued its final guidance on Lemtrada. It recommended that Lemtrada be prescribed on the NHS in England and Wales for adults with active relapsing remitting MS. ‘Active’ is usually defined as two relapses in the previous two years.

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The new MS pill Tecfidera (also known as dimethyl fumarate) is set to receive its final stamp of approval from NICE. Withholding an appeal, it should be freely available on the NHS in England and Wales to people with active relapsing remitting MS. After an initial negative review which we appealed, NICE reached its final decision after reviewing the evidence on the benefits of the medicine. The pill is taken twice a day and is proven to cut relapse rates and may also delay disability progression. It is considered to be more effective in reducing relapse rates and as effective for disability progression as existing beta-interferon treatments. Step forward in MS treatment Nick Rijke, Director for Policy and Research at the MS Society, said: "We’re delighted that NICE has finally approved Tecfidera after their initial negative review of the drug earlier this year. It’s the third new drug to be approved for people with relapsing remitting MS over a number of months so today marks a significant step forward in the treatment of the condition.

MS pill Tecfidera available on NHS in England and Wales

Government in court over PIP changes

Court proceedings will begin in today to determine whether the Government’s decision to change the eligibility criteria for the disability benefit Personal Independence Payment (PIP) was unlawful. At the end of 2012 the Department for Work and Pensions announced it was changing the distance people would need to walk in order to qualify for the highest rate of the mobility part of the benefit from 50 metres, to 20 metres. Now, if people can walk more than 20 metres – even using a stick – they will no longer qualify for the highest rate of the benefit. Half a million set to lose out The change could mean a loss of over £35 a week or access to a Motability vehicle, electric wheelchair or mobility scooter. The Government has said they expect over half a million people are likely to lose the benefit under the new rules. Over the last year the MS Society has been at the forefront of campaigning against this change, either independently, or as part of the Disability Benefits Consortium.

This means that from September 2014, hospitals and NHS Trusts in England and Wales will have to prescribe Lemtrada to all people who are eligible for it and who choose to take it. Decisions about whether Lemtrada will be available in Scotland and Northern Ireland are expected later in 2014. How does Lemtrada work?How does Lemtrada work?How does Lemtrada work?How does Lemtrada work? Lemtrada was originally developed to treat certain types of leukaemia and lymphoma (cancers of the immune system). It binds to and kills white blood cells (immune cells) thereby stopping the immune cells from entering the brain and attacking myelin (which is the cause of damage in MS).

“The drug is proven to be safe and effective in treating MS and for many people it will be much easier to live with because it’s taken in a pill form.” Freely available on NHSFreely available on NHSFreely available on NHSFreely available on NHS The appeal period closes on 25 July. If there are no hold ups, the NHS in England and Wales will then have 3 months to put the necessary measures in place to be able to provide the treatment. This means that come October, local hospitals have a legal obligation to provide the treatment to patients deemed eligible. NICE have not recommended the treatment for those with highly active or rapidly evolving relapsing remitting MS (for whom other treatments are available such as Lemtrada, Tysabri and Gilenya).

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Thought of the month

August Forty-nine years ago this month David and I married. We met, and danced the night away at a New Year’s Eve party on 1st January 1965. We announced our engagement exactly six weeks later, on St Valentine’s Day, at another party (those were the days!) Six months to the day after that he was starting his leave so that was the obvious time to tie the knot (honeymoon, spent in Cornwall – where else!). ‘They’ said it wouldn’t last – we were both too young and could not possibly last the distance! So, I don’t know if we’re going to make it to next year, they could be right. But just in case –

My Missing Carrot

When the government consulted on the change last year (following public pressure) only five out of 1,100 responses were in favour of shortening the distance. Despite this, government plans have continued. Court case Legal teams will argue in court today that the government failed to carry out a fair consultation before making their decision to change the assessment criteria for PIP. It’s hoped that the court case will find the decision unlawful. If it is, this doesn’t mean the government has to change the criteria, but we certainly hope it prompts them to reconsider. Claire Nurden, Co-Chair of the Disability Benefits Consortium and Senior Policy and Campaigns Officer at the MS Society, said: “We have already seen how the Government have failed to listen to concerns about the introduction of PIP, resulting in major delays and devastating impacts on the lives of disabled people. This is yet another example of how grave concerns have been ignored and will have life-shattering results."

if by any chance you are reading this, husband-of-mine, you had better start saving up for my gold watch now! I know I told you that it is David’s birthday in July and I didn’t yet have any plans for the big day so we might see you at Mike’s barbecue. Well, I’m really sorry but by now you are probably aware that we weren’t there. Of course, we might be back home by then and longing for a smoky, charred sausage! I can’t tell you what is planned in case he reads this in the laptop. I have just realised there is a one year anniversary to celebrate – I’ve been having these chats with you since August last year. I know that some of you feel you have nothing to celebrate – that for you life ‘stinks’ at the moment. I truly wish I could do something to make that feeling go away. The least I can do is assure you that I pray for you all; members and carers. I say ‘the least’ but I earnestly believe that prayer does work though not always in the way we might hope. So, until next time, I wish you well and as I said last August, may your God

watch over you. RosRosRosRos

I suspect Mike George, I heard that he had a BBQ last week with a carrot in his salad. I think that there is another battle brewing up and I’m just the rabbit to sort it out. Any information you may have on my missing carrot please call my crime watch number Tel: %^*$£”*(&^()^2 or just tell Malcolm. I have private detective out investigating my missing carrot, so look out if you are involved in it’s disappearance. Thank you.

JasperJasperJasperJasper

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The 1940’s night In all there were about 15 people at the 1940’s night and that include the volunteers running the evening but we had a good night. The Buffet was great and we all had plenty to eat (Too much in fact)

Blind auction results

Our Buffet girls

Mike May and family enjoying the evening

The carers lunch at the 'Royal Duchy Hotel' in Falmouth on the 17th July was really good and I think all that went had a good time. The weather was superb and we could have easily been overlooking the Med. What a beautiful setting. The next carers lunch is on the 3rd Thurs of August which is the 21st Aug. It will be at the 'Trevithick Inn' Camborne Meeting at 12 for 12.30 lunch. Hope to see you there

KarenKarenKarenKaren

Carers Lunch

Congratulations to Gillian Bray who won the auction for the painting with a bid of £250.00. Thanks to all those who put in bids.

Blind auction results

No bids were received for the bracelet so that will be sold commercially.

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Laona’s recipe

Eating out in my part of the world with "dietary requirements" has become something to be endured rather than enjoyed. Ok, some might say I am a little fussy and yes, I do expect to eat something delicious but it doesn't have to be Michelin starred, give me a piece of well cooked fresh fish and a nice salad, something that has been made with a little care and I am perfectly content. We don't eat out often, a meal out these days seems to make a hefty dent in your wallet but on the special occasions we have, a telephone call has been made and assurances given. So off we go, my mouth watering with anticipation, only to find that I can have most things on the menu but each dish will have half of it missing !. It seems all too obvious that it is impossible to cook without butter, milk, cheese and cream, and even more obvious that absolutely no effort was made to accommodate any requirements. A few weeks ago, we head out to lunch and as you can imagine after so many disappointments, I have no expectations and am anticipating the usual scenario. How happy I was to experience the contrary !. I had forgotten how good it feels to be surprised and delight in eating something that is not only delicious but also inspiring. To leave not only having had a 1. really enjoyable experience but to come

away full of ideas, made a great day even better. What was so inspiring ?, would you believe, a plate of salad.

A delicious arrangement of salads. Salads will never be the same again, salads have now become complete meals not just something that sits on the side of a plate. Get inventive with those salad leaves, add some sprouts, herbs, nuts and seeds, serve along side some vegetable creations, like this Zaalouk, a Moroccan aubergine and tomato dish, which is really delicious, add perhaps a slice of homemade bread and I hope you will agree that there can be a whole lot more to a salad. Hope you Enjoy !. More ideas at www.cookeathope.com • 2 aubergines • 4 vine ripened tomatoes, chopped • 2 fat cloves garlic, crushed • 1 tsp ground cumin • 1 tsp paprika • 1/2 tsp cayenne pepper • 2 good pinches of cinnamon • a handful of chopped coriander • 1 - 2 tbsp lemon juice • 2 - 3 tbsp olive oil Oven 220C/425F/gas 7 1. Prick the aubergines in a few places with

a fork, place on an oiled baking tray and roast for 40 minutes, or until the flesh feels soft. Leave to cool slightly then cut in half lengthways, scrape out the flesh and roughly chop. Put into a sieve and leave to drain.

2. Heat 1 tbsp of oil in a saucepan and fry the garlic and spices for a minute or so. Add the tomatoes and 1/2 a tsp of salt, reduce the heat and simmer stirring

occasionally for 20 minutes or until you have a thick sweet sauce. 3. Press out any remaining liquid from the aubergine and stir into the tomato sauce. Add the coriander, 1 tbsp of lemon juice and a tbsp or two of olive oil, mix well. Taste and adjust with extra lemon and salt if needed.

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Heroes Go Up, Up & Away!Heroes Go Up, Up & Away!Heroes Go Up, Up & Away!Heroes Go Up, Up & Away! 14th September is the chance for you or someone you know to Challenge MS and zip line over the flooded Adrenalin Quarry near Liskeard. Massive 50m high and 490m long. Why not take part dressed as your favourite hero? Entry fee just £10 payable on the day and minimum sponsorship only £30

Lots of fun for all the family with bouncy castles and face painting. Why not make a day of it and bring a picnic?

We are aiming to make the day as accessible as possible for people .

More information at www.mssociety.org.uk/adreanlin or from Andy Jarrett via [email protected] or 0208 438 0943

Adrenalin Quarry Remap

Do you remember an article some months ago about Remap, well they are coming to our get together on the 13th September at the Carnon Inn, Carnon Downs, to talk about their services. Remap are a group of professionals who enjoy helping people with specific problems. They will access and design aids that make your daily lives much easier and what’s more there is no charge so don’t miss this opportunity to talk to them and discuss your problems at the get together. BOOK NOW! Tel: 01209 860754

Do you have any request for equipment or even jobs around the house that you need help with, you may not know it but our branch can give you financial help for your equipment or projects. Our grants committee will access your requirements and see if we can help with your application. In the first instance please call our support line or Mike George. Tel support line: 01872 274911 Mike George Tel: 01872 862031 DO IT NOW!

Grant applications

Judy & Neville reed

Judy and Neville have decided to stand down from our committee and take on a more relaxing life. Their departure from the committee was a disappointment to us and we can’t thank them enough for the years of support they have given our branch. Of course we will still see them at our events and they will continue to be members so we have not lost them altogether. We do wish them every good wish for the future. Thanks Judy and Neville

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August quizAugust quizAugust quizAugust quiz July Quiz answersJuly Quiz answersJuly Quiz answersJuly Quiz answers

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Can you spot the ten difference

The Olympic Games 1 What are the colours of the five Olympic rings? 2 In which year did women first compete in the Olympics? 3 At which winter games did Torville and Dean win gold? 4 Which city hosted the summer games in 2000? 5 For which event did Daley Thompson win Olympic gold? 6 Which country has won the most medals since 1896? 7 Who was the first man to win gold for both 200 and 400 metres? 8 Whose record long jump stood for 24 years from 1968?

Answers to July spot the difference

August mystery object What is it?

1 Mike The Knight 2 Paddington Bear 3 The Magic Roundabout 4 Camberwick Green 5 Peppa Pig 6 Fireman Sam 7 The Flumps 8 Everythings Rosie

A Matzeh Rolling Pin for making unleavened bread. The pictured roller was from the Jewish Museum in Amsterdam.

July’s mystery object

Can you spot the 15 Differences

Target

£2,000.00

Actual

to date £1,200.00

Money Boxes

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August Crossword

July crossword answers

DownDownDownDown

1111 Solution (6) 2222 Quick sharp reply (7) 3333 Distress signal (5) 5555 Wavy, winding (7) 6666 Approximately (5) 7777 Pilgrim's destination (6) 9999 General agreement (9) 13131313 Green gem (7) 14141414 Japanese dish of thinly sliced raw fish (7) 15151515 Short-legged hound (6) 16161616 Legal (6) 18181818 More certain (5) 20202020 Bicker (5)

AcrossAcrossAcrossAcross

1111 Loose from moorings (6) 4444 Academy awards (6) 8888 Brownish tint used in photog-raphy (5) 9999 Frankness (7) 10101010 Oriental (7) 11111111 Choose to participate (3,2) 12121212 Morning snack (9) 17171717 Supermarket section (5) 19191919 Welsh port (7) 21212121 Exceed (7) 22222222 Intense sorrow (5) 23232323 Diatribe (6) 24242424 Story in instalments (6)

Happy birthday to: 1st1st1st1st Bertha Ferguson 5th 5th 5th 5th Amanda Durnford 17th17th17th17th Tony Parkes 23rd23rd23rd23rd Mr B Clutterbuck 26th 26th 26th 26th Heather Ashton

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Read-A-Thon news

So what’s happening with the Read-A-Thon? I have invited all the schools in our area to a business breakfast and Read-A-Thon presentation with myself and Chris Higgins the author of “The Trouble with Tash” We will encourage the schools to take part and understand the value of the project and its potential. There is also some good news, there is going to be an article in the MS Matters magazine on our Read-A-Thon, this will of course help the project and spread the idea to other areas of the country. I only hope that schools respond to our invitation! Read more in Octobers magazine. I have completed the awards for the four schools who took part in the last Read-A-Thon round and would like to thank them for their support. They were: Darite Primary School Lanlivery Primary School Cape Cornwall School Kehelland Village Primary School. Some have taken on the Read-A-Thon as an annual event, that’s exciting and encouraging.

Adult Read-A-Thon

The Read-A-Thon does not just apply to schools, we could run one for adults if we can get enough interest. Do you read and have lots of friends and family who could sponsor you? Why not get in touch with me and if there is enough response I will arrange an adult Read-A-Thon. Many people read so why not do it to fund your local MS Branch, I might even be able to pull out some really nice prizes. Call me! Malcolm Tel: 01209 860754

Youth Group South

I am still looking to start a youth group in the southern area of our branch so if you want to get involved now is the time to do it. Who do we need?Who do we need?Who do we need?Who do we need? We need a group of young people between the ages of 5 to 17, they can be a group of friends, family or relations. Numbers in the group are not important, there could from two members upwards How does it work?How does it work?How does it work?How does it work? The group would meet once a month and discuss what projects they would like to do to encourage awareness and raise some funds but most importantly, have fun and enjoy doing it. Funding:Funding:Funding:Funding: The group would be funded and supported by the South & West Cornwall Branch. What’s in it for the group?What’s in it for the group?What’s in it for the group?What’s in it for the group? To show our appreciation the South & West Cornwall branch would allocate funds for special outings to adventure parks, bowling evenings and even go kart racing where possible. We will of course provide the group with MS T shirts and being a group member would look really cool on your profile for the future. What next?What next?What next?What next? If all this looks interesting to you then we need to talk. Have a talk to you parents about it or if you are a parent and would like your son/daughter to be involved talk to them about it and contact me, I will arrange a meeting for all interested parties where we can discuss the project in more detail. Getting young people involved in interesting projects works well for them, their school, their family, the organisation and the Community so why not give it a try? Call me Malcolm Tel: 01209 860754

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Situations vacant

This is a new section in our magazine, we have vacancies for existing posts and new vacancies we would like to develop. Branch Secretary:Branch Secretary:Branch Secretary:Branch Secretary: We are looking for a competent branch secretary with the following skills: Computer literate Administrative experience Flexible attitude Good team player All other training given. Press officer:Press officer:Press officer:Press officer: Some one who is a good communicator to build up a rapport with local media to ensure awareness of the branch and its activities. Able to write articles and promote the branch in the South & West Cornwall area. Store collectors:Store collectors:Store collectors:Store collectors: Volunteers to carry out collections at supermarkets and major stores, training will be given. Notes:Notes:Notes:Notes: All these posts are voluntary but expenses will be paid within the guidelines of the MS society. Please contact Mike George or Malcolm Glister if you want more information and are interested in any of these posts.

Well another month has flown by again. I hope you are all enjoying the fantastic weather. The thunder and lightening storm the other night was magnificent!! St Just held its annual Lafrowda Day on Saturday 19th July, where this year I had a table to raise awareness of MS. The original weather forecast wasn't very good but the day turned out to be extremely hot. The parades were great and to top it all I raised nearly £60 for our Branch.

From Nikki Jenkin

Message to all carers

Caring for our loved ones when they are unwell is a function that we will always be willing to do no matter what the consequences may be, however it can have an effect on our lifestyle and ability to remain in a social and community environment. The South & West Cornwall Branch pride themselves with the fact that we consider carers as a major priority in the MS community. Our Carers officer Karen Moore has made great achievements over the past few months and obtained grants for monthly carers lunches. The branch also provides a carers group for carers to come and enjoy time together, away from their caring environment and many have found this therapeutic and rewarding. The group meets once a month and finances are available if you need to hire care to look after your loved ones while you are away. It is apparent however that this facility is under used and we would like to see many more carers, if not in the group, to attend the carers functions. There is no cost involvement and much to be gained from being part of the social carer network.

The message is don’t go it alone there are many options to help you as a carer, you will be surprised at the help we can offer. So get in touch with Karen (01872 274188) and started in the carers group.

MMMMaaaallllccccoooollllmmmm

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Mixed Feelings by singletonsmith I was three when I first went to Singleton; since then it has always been my favourite place. Singleton is a large house that sleeps twenty people, situated in an acre of land, five minutes walk to Daymer Bay in North Cornwall, facing Padstow on the Camel estuary. This was Betjeman country: he lived in a house opposite our driveway and we experienced “sand in the sandwiches”! As children our family, three girls and a boy, were taken to Singleton for summer holidays. My father would sometimes stay in London working for a while and Mum would bring her friend, Mary, and her two children, Jonny and Moppy, who enjoyed playing with us. During these early years I remember we took a picnic for lunch and later my father employed a cook, Rose, who used to make a meal for us when we got back. Rose adored my mother; my father said it was because Rose’s mother, like ours, was called Lydia… To get to Singleton from London it involved a long journey. Lucy, the youngest of us was a baby who sat on Mum’s knee; we three older children were cramped in the back seat of our Alvis which was a very fine green car with a roof that could be taken down and plastic windows for us back-seat travellers which you could hardly see through. I can’t help remembering its number-plate was FKU 112 – Mum never understood why we thought this was rather rude. The road in those days was not very good, the M4 and M5 had not yet been built, and Mum always said we would be grateful when the Hammersmith flyover was completed. I seem to remember that, when we got to Ilminster (or was it Ilchester?) we used to ask if we could stop for a beefburger, which we did sometimes. I remember I used to suck my thumb and sniff my woolly-doolly, Jessica used to complain about feeling sick, and Oliver was trouble, as he always was…

Just before we arrived Dad would turn right into the driveway to Singleton and make us all get out of the car with the suitcases because, otherwise, the bottom of the car used to scrape on the road. Then it was a quick drive along a short path to Singleton. Some years it would rain and my mother called it horizontal rain, which I now understand is rain blown by the wind so it doesn’t come straight down. The house was within easy reach of Brae Hill which we often climbed; it was also near St. Enodoc Church that nestles in the sand dunes; and it is near St. Enodoc golf course so that when my father did come (he never liked sunbathing or swimming) he could play golf. On one occasion Dad invited a friend of his to stay and my mother was so worried about the friend’s wife, who was an alcoholic, that she decided to take up golf which became a lifelong pleasure to her. One winter my parents decided to take us for the Christmas holiday; this involved buying a Christmas tree and Dad found some candleholders. Unfortunately one day the fairy at the top of the tree caught fire, causing great excitement. It may have been the same year that mum told me that in the excitement of packing the presents, my presents had been left in London. I, aged eight or so, was noble and brave about this and later I remember opening my clarina. One year my father decided to ask his father to join us in Cornwall. Grandad was never a very nice man and, one day, my mother said he had been so horrible to my father the night before that she made up that one of Dad’s patients had rung up to ask Dad to return to London to help him. I remember thinking that this was very clever and scheming of my mother! It is a pity that Grandad was the only grandparent I ever knew; his wife was called Mary and I think that helped Dad to particularly like me. When I grew older I used to make a proclamation that I was going to swim in the sea every day; in those days we didn’t have wet-suits so it was a pretty valiant

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effort. When I was in my teens I had a friend called Vivien who was in a rather vulnerable state and asked if she could join us on holiday. That year there were family problems so we had a very tense stay at Singleton. Vivien and I had many happy holidays at Singleton; one year we slept in the hut which was beside the house, and, as we only came out for meals my mother said we hadn’t done anything but read our Agatha Christies and talk in the hut and she felt we should be out walking or swimming. Of course, this behaviour is typical of teenagers. When I was a bit older my Uncle Michael was staying, with his new wife, Philippa, and he told me that as I was waiting for Adrian to arrive I should go up to the house, comb my hair and put on a nicer shirt; the outcome was that Adrian soon arrived and about two years later we were married in the nearby Church at St. Minver. Dad had banned the idea of me getting married in St. Enodoc as it would interrupt the golfers! When I was twenty I decided to apply for Exeter University as it was the nearest one to Singleton. My plan was to meet a minor-public-school bloke who had a car to take me to Singleton, about an hour’s drive. At the Freshers’ Ball I met Tony who had a Mini which took me and various friends to Singleton. At that time my father put the electricity on a meter! Ever since then it has continued to be a place which friends – students, parents, all sorts – have loved and enjoyed being there. Our four sons enjoyed it when they were children and now that they are older, in their thirties. We have friends to stay with their children and so they also have warm memories of Singleton and of the pub called Pityme which sold delicious meals, and the Rock Bakery where we bought bread and pasties when we were there. Now I am disabled and confined to bed or a wheelchair by MS,

I still have, in my head, many happy memories of Daymer Bay. I can’t now swim or build sandcastles or play in the rock-pools with my grandsons but I have these activities in my mind. When people talk of going to Toad Pool, the Fairy Pool, Lundy Bay or Brae Hill, though I can’t go there literally, I can in my mind. Beethoven wrote the Ninth Symphony when he was deaf; he was able to imagine the sounds that the various instruments of the orchestra would make; similarly I can enjoy Singleton in this way. My mixed feelings come about because I do love the place and it still hurts when I can’t go to places any more, but I have learned to enjoy my memories of those places. Mary Smith

Sent in by Judy Reed: The Indispensable Man Sometime when you're feeling important. Sometime when your ego's in bloom. Sometime when you feel that you Are the best qualified man in the room. Sometime when you feel that your goings Would leave an infillable hole. Just follow this simple instruction And see how it humbles your soul: Take a bucket and fill it with water, Put your arms into it, up to the wrists, Take them out and the hole that remains Is a measure of how you'll be missed. You may splash all you please when you enter; You may stir up the water galore; But stop, and you'll find in a minute That it looks jut the same as before. The moral of this is quite simple. Do just the best that you can, Be proud of yourself, but remember, THERE IS NO INDISPENSABLE MAN!

The Indispensable Man

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Sydne’e Teversham’s trip to France seemed to go well and we like your pictures, but don’t get enough of them!

Great work Sydne’e but why wasn’t I invited to go to

France? JasperJasperJasperJasper By the way, have you seen my carrot its been missing for ages.

16 16

South & West Cornwall branch

MS Youth Group West

“Making Sense”

South & West Cornwall branch

MS Youth Group South

You could have an allocated space in our magazine if you form a youth group and tell us about your activities and adventures. We can publish your annual plan of activities, your pictures and reports. See my notes on page 11, there are exciting opportunities for young people, why not get your school involved too? Belonging to and working with organisations like the MS society branches can have a great effect on your future work and educational prospects. I have given many references to employers who are interested to see that young people have been involved in voluntary organisations, fund raising and awareness.

The youth group have been busy with school and other activities, Megan spent a week in Paris, Ben received a certificate from school for 100%

attendance and Jamie and Lauren both had boxing awards. Jamie received coaches boxer, while Lauren received most helpful and most aggressive......we must all remember to stay well clear of her from now on!!!! Malcolm also presented Jamie with his Read-A-Thon certificate at Cape Cornwall school assembly. The youth group are hoping to do a sponsored bike ride. Details will follow as myself and Malcolm need to do some training first!!! Second half of our London trip along with photos will follow next month. Enjoy the lovely weather but stay safe.

NikkiNikkiNikkiNikki xxx

Malcolm on a bike, this I have to see, I have heard that he has one. I wonder if you can get rabbit bikes, I could go too!

Young people working together can be exciting, educational, constructive and rewarding. They are the future in which we must invest. So wherever you are and whatever you want to do get in touch and lets get started! MalcolmMalcolmMalcolmMalcolm Tel: 01209 860754

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This is not to be missed, Saturday 27th September

Marion Burch Invites you to a concert

with The popular singing group

Proper Job Also

Three’s company Accordions/guitar

The event will take place on Saturday 27th September

7.30pm at

Beacon Village Hall Tolcarn Road

Beacon

Entry by donation which will be gratefully received in aid of the South & West Cornwall Branch of the

Multiple Sclerosis Society

There will be refreshments and a raffle; the hall is suitable for wheel chairs and there is ample parking. See you there!

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South & West Cornwall Branch events 2014/15

29th November - Western Area Christmas Lunch at the Tregenna Castle Hotel. Free for people with MS, £5.00 for carers and £15.75 for others. Call Malcolm to book 01209 860754 Cancellation date 20th November 6th December - Christmas lunch at the Membly Hall Hotel, Falmouth. Free for people with MS, £5.00 for carers and £14.00 for others. Call Malcolm to book 01209 860754 Cancellation date 20th November 31st January 2015 - Cabaret night at the Tregenna Castle Hotel. Free for people with MS, £5.00 for carers and £15.75 for others. Call Malcolm to book 01209 860754 Cancellation date 15th January For more information or to book tickets please call Malcolm: 01209 860754 Email [email protected] Book them of lose them! Important notice: Many of these activities have to be paid for in advance, therefore, low attendances can lead to the South & West Cornwall Branch paying for unused resources. To address this issue there will be three options to book in any of our events: 1. By phone 2. By email Cancellation dates will be applied. Failure to reach the require numbers by those dates will result in the event being cancelled.

Book them don’t lose them! Do it now!!

All members and their families or guests are welcome to these activities wherever they are held, members from other branches are also welcome.

Price correction

For the Christmas lunch and the Cabaret nights the following amended ticket prices apply: Members with MS ………….Free Carers……………………….£5.00 Members……………………£10.00 Guests, non members……..Full price as shown in event details.

13th September—Get together at the Carnon Inn with a talk by Remap 20th September - 1950/60’s night at Perran-ar-worthal Village Hall. Live 50/60’s music from Fire ‘n’ Ice plus an evening buffet. Tickets £6.00. For more information and tickets call Malcolm: 01209 860754 Cancellation date 10th September 27th September - Concert at Beacon Village Hall by Marion Burch’s trio called Three’s Company, joined by that popular singing group Proper Job. Details to follow in August magazine 11th October - Get together at the Carnon Inn. Details of activities to follow. Call Malcolm to book: 01209 860754 Cancellation date 1st October 8th November - Cabaret night at the Membly Hall Hotel Falmouth Cancellation date 25th October 1st November - Get Together in West, to be held at the Godolphin Arms, Marazion It’s free Call Malcolm to book 01209 860754 Cancellation date 20th October

Branch contact details:Branch contact details:Branch contact details:Branch contact details: Whispering Winds Crellow Hill, Stithians Nr Truro, Cornwall TR3 7AQ Tel: 01872 274911 www.mssociety.org.uk/southcornwall Satellite eventsSatellite eventsSatellite eventsSatellite events Last Monday of each month: Last Monday of each month: Last Monday of each month: Last Monday of each month: Helston & Lizard Group meeting: Wheal Dream Restaurant, Helston from 11.00am to approx 2.00pm. Lunch at discounted rate. Every Thursday: Every Thursday: Every Thursday: Every Thursday: Yoga at the Well Being Centre, Nance Lane, Churchtown, Illogan. 11.00am to 12.15pm. with Carolyn Smith by appointment only. Every third Thursday of each monthEvery third Thursday of each monthEvery third Thursday of each monthEvery third Thursday of each month Carers meeting at Mike George’s Useful contacts:Useful contacts:Useful contacts:Useful contacts: MS National Centre: 02084 380 700 MS National Helpline: 0808 800 8000

Editors Contact detailsEditors Contact detailsEditors Contact detailsEditors Contact details: To send in articles or comments. Malcolm Glister Whispering Winds, Crellow Hill, Stithians, Nr Truro, Cornwall, TR3 7AQ

South & West Cornwall Branch Information

All views expressed in this publication are individual and not necessarily the view or policy of the charity and its supporters.

Multiple Sclerosis Society Registered charity nos. 1139257 / SC041990 Registered as a limited company in England and Wales 07451571

Chairman: Chairman: Chairman: Chairman: Mike George Telephone: 01872 862031 email: [email protected] Treasurer: Treasurer: Treasurer: Treasurer: Hilary Merton Telephone: 01872 863896 email: [email protected] Address: 7 Agar Meadows, Carnon Downs, Truro, TR3 6HS. Voucher Admin Officer: Voucher Admin Officer: Voucher Admin Officer: Voucher Admin Officer: Christine Sargent Telephone: 01209 315386 email: [email protected] M S Support : M S Support : M S Support : M S Support : Richard Stevens Telephone: 01872 274911 Carer’s Officer: Carer’s Officer: Carer’s Officer: Carer’s Officer: Karen Moore Telephone 01872 274188 Email: [email protected] Branch Profile manager, Magazine Editor and Branch Profile manager, Magazine Editor and Branch Profile manager, Magazine Editor and Branch Profile manager, Magazine Editor and Branch secretary: Branch secretary: Branch secretary: Branch secretary: Malcolm Glister Telephone: 01209 860754 email: [email protected] Branch Web manager: Branch Web manager: Branch Web manager: Branch Web manager: Mike May Telephone: 01872 272 957 email: [email protected] Membership: Membership: Membership: Membership: Betty Alderton Telephone: 01872 270901 email: [email protected] Minute Secretary: Minute Secretary: Minute Secretary: Minute Secretary: Moe Fisher email: [email protected] Branch Safety Officer and Youth Team: Branch Safety Officer and Youth Team: Branch Safety Officer and Youth Team: Branch Safety Officer and Youth Team: Nikki Jenkin Telephone: 01736 787089 email: [email protected] Events CoEvents CoEvents CoEvents Co----ordinator: ordinator: ordinator: ordinator: Malcolm Glister Telephone: 01209 860754 email: [email protected] Fund Raising Officer: Fund Raising Officer: Fund Raising Officer: Fund Raising Officer: Marlene Stevens Telephone: 01736 360551 email: [email protected] Young MS & Friends Young MS & Friends Young MS & Friends Young MS & Friends Laura & Alex [email protected]

Collection Officers West:Collection Officers West:Collection Officers West:Collection Officers West: David and Ann Jones Telephone 01736 757297 Email: [email protected]