November 2013
The Lifeboat
Des Coad and Tace
South & West Cornwall Branch Monthly Magazine
Cover picture: This months cover picture is of Des Coad. Des has MS. You can read his story on page 7
this t a o b e if L e th e Insid month MS News Page 3 New potential myelin repair therapy identified Researchers identify 48 new genes linked to MS Lemtrada licensed as MS treatment
Page 13 Merlin MS Centre starts Daily Respite Service Local Physiotherapy Clinics Remember, Remember Mary Smith
Page 4 New study on UK MS rates
Page 14 Susan Creese £750 grant for carers lunches
Page 5 Remap-in-Cornwall
Page 15 Megan’s page
Page 6 Welcome Page 7 Read-A-Thon news. Des Coad Page 8
Alex Allwright
Page 9/10 Quiz page
Page 16 Youth group Page 17 Botox is approved for use on the NHS in Scotland Budgie attacks Jasper in garden during essential tea break
Page 11 Christmas lunch Page 12 From Judy Reed Calling all 30’ish to 40’ish year olds Computer awareness day 16th November 1
Page 18 Events Page 19 Information page
Chairman’s Report What Des Coad wanted, was a campaign to improve the conditions in the City for wheel chair users. He wants to get as Hi all, much support as he can to present it to the Mayor, go to the news papers etc. So should you want to help him in his goal , I know some of you don't like Jasper and why not write to Malcolm or myself and we won't even read his page, but after last can forward it to him. months article about me, I am also finding Now sit back and read this fantastic him a pest. I even thought of instructing a magazine and finally don't forget the firm of solicitors to try and get justice. I then Computer Awareness day on the 16th of thought about my reward and who wants this month. loads of carrots ? Does anyone know a good recipe for Rabbit Stew ? Mike To a more serious note, Malcolm and I PS. Don't tell Jasper, but I really like his visited a gentleman who lives in Truro, with humour and it allows Malcolm the the aim of giving personal views about how opportunity to bring a light hearted section individuals cope with the pressures of living into a MS orientated magazine which could with MS. You will read the article further into be very serious. the magazine. Editors Note Hello everyone! These reports seem to come around quickly, its funny how time passes by Well, what a month this has been. Thank you all for your input to the magazine its good to have our members involved. You may be aware that the West Cornwall Branch closed earlier this year, leaving its members with no branch support. The good news is that the West Cornwall members are now being transferred to South Cornwall and therefor we will now be called The South & West Cornwall Branch. On the 19th October at a conference in the Tregenna Castle Hotel, the West Cornwall members unanimously voted to be transferred to South Cornwall. We of course welcome them into what is now the South & West Cornwall branch.
On page 18 I have outlined a lunch scheme where we can enjoy each others company in different areas of our branch. For a long time we have tried to get better communication in our area and I think this may be an option. Let me know if you would like to meet for lunch in your local area. Christmas lunch is on the 7th December, the menu is on page 11 and Father Christmas will be there again this year with his sack of presents so bring the family and enjoy, please book as soon as possible by calling Chris on 01209 315386, I know that it’s a long way for our western membership but we would love to see you there. We will of course be holding more local events for the west in the future. Lastly, those of you who are attending firework displays please take care and stay safe.
Malcolm
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News from the MS National Centre New potential myelin repair therapy identified A study published in the journal Nature this week has found that an existing treatment, used for another health condition, may have the potential to repair damaged myelin. Researchers at the Scripps Research Institute in California carried out a screen of 100,000 compounds to find those that could have the potential to promote myelin repair. They found several candidates, and in particular identified that a drug currently used to treat Parkinson’s disease had the potential in laboratory models of MS to stimulate the brain’s own stem cells to repair myelin. Researchers will now need to develop this treatment further and establish whether it could be effective at slowing or stopping progression in MS, and also if it is safe for people with MS to take. Researchers identify 48 new genes linked to MS Results of a new study into finding the genes that may increase a person’s likelihood of developing MS have been published today in the journal Nature Genetics. This is the largest study of its kind to be carried out for MS and involved gathering data from over 38,000 people, including 14,498 people with MS.
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In total, 48 new genes that show links to MS were identified. By combining this with the results of a similar study from 2011, there are now over 100 genes known to be associated with MS. Links to the immune system Interestingly, most of the genes identified in the study have a role in the immune system. The researchers also found that some of the genes identified are linked to other autoimmune conditions, such as Crohn’s disease and inflammatory bowel disease. The MS Society co-funded the study, which was conducted by the International MS Genetics Consortium (IMSGC), an international collaboration between scientists from across the world. In the UK, the study was led by researchers at the University of Cambridge. Dr Susan Kohlhaas, Head of Biomedical Research at the MS Society, said: “We need to discover as much as we can about the factors that may increase a person’s risk of developing MS if we’re to find new ways of treating or even, one day, preventing the condition. Genes are one of the key risk factors, so we’re delighted to have co-funded this work, which has identified several new avenues for MS research to follow.” Lemtrada licensed as MS treatment Lemtrada (also known as alemtuzumab or CAMPATH-1H) has been licensed in Europe to treat people with active forms of relapsing remitting MS. Late last year trial results showed the treatment was considered safe and effective in reducing relapse rates, compared with Rebif, in people with MS. One of the trials also found the treatment could reduce disability progression. Our Head of Biomedical Research has written a blog on the history of the treatment, trial results and possible side effects.
What happens now? While Lemtrada has a licence, and can therefore legally be prescribed by doctors in Europe, NICE and the SMC (in Scotland) will need to consider if the treatment is cost effective and should be made available on the NHS to all those eligible. The NICE committee are due to look at the treatment soon and the SMC are expected to look at the treatment towards the end of the year. New study on UK MS rates A study has suggested that more people may be living with MS in the UK than previously thought. Researchers at Dundee University, funded by the MS National Therapy Centres, have analysed the GP Research Database (GPRD) and estimated there are 127,000 people living with MS in the UK. This is significantly higher than the 2009 study by the MS Society, which used the same database to estimate there are 100,000 people with the condition. However, it is possible the latest study may be an over-estimate. Ed Holloway, Head of Care and Services Research at the MS Society, says: "Any work that helps build a clearer picture of MS prevalence is welcomed, as this can help health and social care services ensure they develop appropriate services to meet people's needs. "But estimating prevalence of MS is difficult, as databases of GP records are not entirely reliable. A previous study of the GP Research Database in 2007 highlighted that only 82% of MS cases could be verified. Based on this, we estimated in 2009 that there were around 100,000 people living with MS in the UK. "This latest study, using the same database, does not appear to have adjusted for the reliability of the data, so it’s possible the researchers may have
overestimated the number of people living with MS in the UK. We need to look more closely at the methodology used to assess whether we need to revise our estimates." Updated Atlas of MS launched The number of people living with MS in the world has increased by 10% (to 2.3 million), according to a new Atlas of MS released by the Multiple Sclerosis International Federation (MSIF). The Atlas of MS 2013 looks at the number of people living with MS, and the treatments and support available to them, in countries around the world. The Atlas is compiled through surveying experts across the world and brings together the best available evidence. It identified a 30% increase in the number of neurologists worldwide and a 50% increase in the number of MRI machines available in developing countries – both of which could account for the increase in the number of people living with the condition, as more cases of MS are being identified than has previously been possible. MS in the UK In the UK, the Atlas of MS used data from the MS Society’s ‘Strength in Numbers’ study – the results of which were released in 2009 – to feed into the report. Ed Holloway, Head of Care and Services Research at the MS Society, said: “The Atlas of MS is a useful tool in helping us to understand more about how MS affects people worldwide. The more we know, the better equipped we are in ensuring people to have fair access to the treatments and services they need. “For the UK, the Atlas of MS reports on figures previously established by the MS Society in 2009 – but it’s incredibly useful to see these figures in a worldwide context.”
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Remap-in-Cornwall
About Remap: Questions:Questions:- What do you do - if you are house bound all winter, you can’t get your coat on due to arthritis in your shoulders and you have no one to help you? You don’t trust your walking aid as the brakes don’t work properly? Hanging out the washing is difficult as you can’t manage the clothes pegs. Your shower chair needs adjustment? The specially adapted toilet seat has a broken hinge?
family member, friend or neighbour and our website: www.remap-in-cornwall.org.uk has all necessary contact information including a downloadable referral form. Website: - this was set up to promote public awareness of our existence and the kind of work we do so as we can start addressing the considerable unmet needs, which we feel exists within the community. The NHS/DHS may be wonderful but where do you go when they can’t help you? Please visit our Answer: Remap – we are a voluntary website and see what we have achieved (charity based) organisation, found this year alone. Do you have a need we can throughout the UK who help people with all help you with or know someone who does? kinds of disabilities with these and many Then get in touch –we would be glad to more problems which make everyday living help. difficult. We don’t charge for our help. Ian Royston (expenses for our engineers for materials/ (acting chair Cornwall branch of Remap) travel are reimbursed from a central fund). Where possible we modify existing equipment to suit the client’s specific needs device to prevent hand i.e. raise/lower walking frames, toilet seats slipping off walking frame etc. But if necessary design & make a bespoke piece of equipment to fit a particular one-off need. Access: – referrals mostly come from OT’s (Ocupational Therapists) and Physiotherapists working in the community who identify unmet needs in the course of their case work. If off the shelf equipment is not available via the usual DHS/NHS channels then our referral secretary :Jennie is contacted by e mail or phone who allocates the referral to one of our engineers with the appropriate skill mix. However anyone can approach us directly either for themselves or on behalf of a
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Rollator modified for left handed (reverse) braking & right gutter arm rest.
device for putting on coat with frozen
shoulders
Earlier this year the West Cornwall branch was closed, leaving the members with no branch support, in response South Cornwall Branch indicated that they were happy to take on the West Cornwall members if they so wished. At a conference on the 19th October the West Cornwall membership voted to be transferred to South Cornwall. So what happens now? Well, London is transferring the membership to South Cornwall and our new name will be The South & West Cornwall Branch As you can see I have changed the name of our magazine accordingly, as and when our stationary is renewed it will be printed under the new name. First of all I would like to welcome our new membership and hope that they find their new branch affective and supportive. You will receive this magazine every month and I would be grateful if you would participate in it by sending me your thoughts and ideas, it is your magazine for you to have a say in the way your branch works. Services: The services offered by your branch are many and varied but as with every new venture we are unaware at this time of the nature and depth of services you require, it is therefor important that you communicate with your committee with regard to those services through this magazine. I would ask you to email or write to me (Malcolm Glister) with your thoughts and concerns about the services you need or the concerns that you have. In next months issue I will enclose a flyer of the services we already offer, this will help you and give you an idea of what is already available.
Time Scales: This transition will not be achieved overnight and we make no promises of immediate changes and facilities but we will keep you informed of progress and work hard to establish results. As part of your new branch you are encouraged to attend all our functions although at the moment they are in the South we will now start to look at functions and social events in the West of Cornwall. Support: Your new support number is: 01872 274911 Please do not hesitate to call if you have any concerns or issues you wish to discuss. We also have direct access to the Citizens Advice Bureau, we have a dedicated fast tracking CAB officer who will talk you through any issues regarding benefits or financial issues you may be have. For this service please call your support number. Contacts: On the back page of this magazine you will find the contact details of our officers and their roles within the branch please feel free to contact them if you need to. As I have indicated it will take time to amalgamate and supply the facilities in the West and I would ask for your patience during this time. Finally on behalf of your new committee we welcome you to the South & West Cornwall Branch of the MS society. Thank you
Malcolm Glister 6
Read-A-Thon news Exciting times for the Read-A-Thon, four schools are taking part in November: Lanlivery Darite Cape Cornwall Kehelland With the new procedures there is more to be achieved and I have received family prizes from: Lappa Valley Railway Isles of Scilly Steamship company Newquay Zoo Maritime Museum Flambards Eden project So there’s lots to be won and lots of reading to do, I will report back on progress in future magazines Des Coad
Des Coad and the Des Coad campaign
About Des: Des Des Coad lives in Truro with his wife Helen and has been married for 36 years, he has two children and one grandchild, his working life was in engineering when he worked as a plant engineer for Plant Engineering Services who later became Hewden Plant. Later he became the manager of Hewden plant hire Redruth. Des also played football for Truro City so has led an active life with football playing a great part in his life. Des was diagnosed with MS 20 years ago and now has difficulty getting about, his positive attitude to life is an inspiration and he takes life for what it is. His main regret is the inability to walk and get about.
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Truro is a rough ride in a wheelchair on those cobbled streets
The Campaign: Des has had an issues for some time about the streets of Truro and the rough ride and difficulty in manoeuvring a wheelchair through the cobbled streets. He said, its time that something was done about it in the interests of people with disabilities and wheelchair users. To make an impact on the situation Des has started a campaign to encourage people to support him in sending a letter to the Mayor of Truro signed by as many people as possible. How can you help? You can join the Des Coad campaign by writing to us with your letters of support, each letter received will form part of the campaign. Send your letters to me, the editor, and let the campaign begin. Editors details on back page
Alex Allwright: Alex is one of the Young MS and Friends Co-ordinators, Alex was diagnosed with MS 2 years ago when she was 21 and during her second year at university carried out an MS survey. Alex kindly gave permission for me to publish the results, they make interesting reading, I will publish the results in December magazine but here is the initial background and introduction to her survey: Hello, My name is Alex Allwright and I am in my second year of university and I have been asked to create a business plan as part of my degree in Events Management. I have chosen to do something that is very close to my heart. It is something that I would love to change for real, but for now I just have to create a hypothetical business plan. I was diagnosed with MS over a year ago at the age of 21 years old. During the initial shock I found it quite a lonely existence as I did not know anyone in Cornwall who was in the same position as me, and I found it difficult to cope. In my local area we do not have the support from a local MS Society branch, so I didn’t have anyone to talk to or even explain why certain things were happening to me, apart from my consultant I see once every 6 months. So for my business plan I would really like to produce some sort of social peer group, which supports and welcomes all sufferers, but in particular the young and newly diagnosed, so they know they are not alone. This would be done by providing a place to hang out and get to know people who are in the same position as each other. There would also be one off meetings to teach coping and exercise techniques, guest speakers, and organised social outings where people can come and go as they please; hopefully leaving with a positive can do attitude and the sense that they are not alone. It would be a “not for profit” business, with all monies being completely invested in the organising of the events, as funding is simply not available. It is arguable that the majority of support is aimed at slightly older sufferers, and I feel that more could be done for those who are diagnosed at a younger age. It’s something that I know I could have benefitted from. I just want to say thank you for reading, and feel free to leave any comments or questions as there is always room for improvement. If you get the opportunity and you support my idea, it would be very helpful if you could fill out my questionnaire. I know that it is hypothetical, but simply knowing how the MS community feels about this matter could go a long way in the future…
Don’t miss Alex’s survey in next months magazine, I am glad Alex found us she is a great asset to our branch
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October Quiz answers
November quiz Re-arrange the letters to reveal girls names.
1 MICHAEL 2 JAMIE 3 PERCY 4 CALLUM 5 ROBERT 6 WILLIAM 7 CHARLES 8 MORGAN 9 LESLEY 10 NATHAN
1 NARLEU 2 REULIM 3 MRREOYAS 4 RHOANS 5 IREFNEJN 6 NDSAAR 7 ECOLH 8 ESOIUL 9 ATMEHL 10 DLNYISE
What’s this mystery object?
Money Boxes Target £2,000.00 Actual to date £1000
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Happy birthday to: 2nd Linda Croxford-Turner 7th Ann Horscroft 14th Margaret Colwell 14th Susan McSorley 18th Peter Coombes 23rd Muriel Gilbert 26th Rosalind Parker
Did you spot the 12 differences?
October mystery object
Across
Down
1 Silly laugh (6) 4 Academy awards (6) 8 Unit of weight (5) 9 Heraldic creature (7) 10 Fainted (7) 11 Tightly packed (5) 12 Lawyers (9) 17 Given medicine (5) 19 Inexorable (7) 21 Increased threefold (7) 22 Previous (5) 23 Go away (6) 24 Cordiality
1 Grumble (6) 2 Venetian canal boat (7) 3 Stay longer abed (3,2) 5 Fraud (7) 6 Bedeck (5) 7 14-line poem (6) 9 Sneaky (9) 13 Small fish (7) 14 Sports arena (7) 15 Prepared for publication (6) 16 Fabric stiffener (6) 18 Chimney cleaner (5) 20 Greek vowel (5)
Home Money boxes Its been some years now since we issued the home money boxes for you to collect your odd pennies and change. We have reached £1000.00 and I must thank those who have supported the idea. If you would like a home money box please contact Hilary our treasurer.
Christmas Lunch BOOK NOW!! Christmas lunch 2013 is on the 7th December at the Membly Hall Hotel, Falmouth. Book your places with Chris Tel: 01209 315386 Free for people with MS £5.00 for carers £13.00 for guests 10
Christmas lunch 7th December 2013 at the Membly Hall Hotel, Falmouth Menu Chilled fruit juice Potage Maison Traditional roast Turkey Chipolata Sausages, Chestnut stuffing Cranberry sauce Roast potatoes Selection of vegetables Christmas pudding & Cornish Clotted cream Sherry Trifle Meringue Glace Various Sorbets Cornish Ice Cream Fresh Filter Coffee & Mints Father Christmas will be there and there may be a few more surprises! Details: 12.00 for 1.00pm Lunch Price £13.00 for Guests £ 6.50 for children 11 or under £ 5.00 for Carers Free for people with MS Please book your seats well in advance, call Chris: 01209 315386 Do it now!!
ALL ARE WELCOME
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From Judy Reed
Calling all 30’ish to 40’ish year olds
BEETROOT & PINEAPPLE CAKE Ingredients 225ml vegetable oil 400g caster sugar 4 eggs 1 teasp vanilla extract 275g grated beetroot 220g tinned pineapple, pureed with its own juice 375g plain flour 2 teasp baking powder 1 teasp bicarbonate of soda 2 teasp mixed spice 1 teasp salt
I use the term ish very loosely, there are an increasing number of people who do not relate with the things that older people do and therefor don’t get involved with many of the activities we provide. This is understandable and the very reason we started the Young MS and friends group aimed at the 18 to 25/30 age group.
Method: ♦ Preheat oven 180C Gas 4 Grease & line 20 x 30cm baking tray ♦ Mix together vegetable oil and sugar until well blended. ♦ Beat in the eggs one at a time, then stir in the beetroot and pureed pineapple and juice. ♦ Combine the dry ingredients and then gently stir into the mixture. ♦ Bake 40 - 45 mins. Ice as desired or leave plain.
So how can we overcome this situation, I would hope that everyone would attend our functions but there is no reason why social groups shouldn’t be formed where like minded people can get together and enjoy each others company. If you are interested in starting a social group within your area please let me know and I will reserve space in the magazine to advertise your groups activities, we may even be able to help with funding. Malcolm
Although most of our functions include all the family there are still times when people of certain age groups like to be together. It would appear that there are three main categories in this age group scenario: 18 to 25/30, 30 to 40’ish and 45/50 upwards.
Computer awareness day 16th November Want to know more about your computer or how to use a specific programme, maybe you want a problem solved. Come to the computer awareness day at Mike Georges on the 16th November 10.00am til 2.00pm Phone Mike George with your requirements: 01872 862031 Don’t miss this opportunity to learn about your computer, get advice or even get yours repaired (subject to condition) These computer awareness days have been very successful in the past and continue to gather interest in our modern technological world, so get booked in, the pasties are great!!
01872 862031 12
Remember, Remember ..... Last month, if you remember, I suggested we pray for the A new daily respite care service is now medical profession. From the available at Merlin MS Centre. number of doctors and nurses This new service offers a safe place where I’ve met since I last wrote to you I think somebody must have! Praise the Lord for loved ones will be looked after in a warm bright and friendly environment. Structured all they do. days will include activity workshops, plenty This month, as the heading reminds us, of chatter and some quiet time. Carers can brings what should be a time of festive leave their loved ones knowing that they are firework fun, jacket potatoes in the embers happy, giving them a much needed break. of the bonfire, gingerbread men, hot This service is open to all but priority will be toddies and let’s not forget the poor old Guy. But let’s also remember those who given to those living with MS in Cornwall help keep us safe at this time of year: the For more information contact Shelley King. Fire Service, Coastguard, ambulance crews Respite Manager on 01726 885530 or and more, who turn to our aid whenever we email Shelley@merlinmscentre.org.uk or call. Not forgetting, of course, the Police visit our website at who have the unenviable task of carrying us bad news when things go wrong. May your www.merlinmscentre.org.uk God watch over you and all who you love. Local Physiotherapy Clinics Enjoy Wendy Lobb, M.C.S.P. Firework Night, Private Chartered and keep safe! Physiotherapist I leave you in safe hands. Registered Member of the Health What shall we be thinking of this time next Professions Council month? CSP Membership No. 043667 Merlin MS Centre starts Daily Respite Service
Thank you to those who responded to our article in Septembers magazine regarding Wendy Lobb and Physiotherapy clinics. Unfortunately there were not enough responses to arrange the facilities required but if you would like to contact Wendy direct please feel free to do so. We would still like you to send in your interest and if the response is enough we will re consider so GET WRITING IN ! Wendy is available for home visiting throughout the South & West Cornwall Branch area and will be delighted to receive any enquiries. She is available on: 07768 586821 (daytime) or 01209 698896. 5 Email; wendythephysio@gmail.com. 13
Mary Smith I am living in THE TECHNOLOGICAL AGE. The trouble is I am sixty-one and need my sons’ help to make sense of it. When I told one of them that I was going to continue writing about my experiences of living with MS and I was going to be interviewed by Sarah from the MS Society, he immediately said I should have a BLOG. I had no idea what a blog was or how to set one up; so he proceeded to tell me. He assured me that it was very easy; the trouble is most of my friends are about my age so they were equally uneducated in blog management. Indeed, one person older than me thanked me for introducing him into the world of blogs as up till now he had been a “blog virgin”!
I was told by my son, Barnaby, to send him all my email contact details so that those people could go straight to the website address for the blog. They have seen what I have written because they are given notice of any new post on the blog, and now people are encouraging me to write more for the blog. As I have shown a good number of people a copy of my book (“How my life was tripped up by MS”) which includes some poems, they have asked me to write more poems, so my last piece for the blog was a poem. I had a number of positive responses to that and I certainly value anything that anyone wants to say about any piece I have written. For posting the poem on the blog I had to ring my youngest son, Oscar, to confirm how to access my blog. He told me that it was easy, you just needed to know the web address. About fifteen years ago we had our first computer and I used it to write various pieces, then my fingers stopped working properly and I had to take to dictating to various friends. So now I dictate generally to Sue who doesn’t tell me how her computer works differently to mine (though most people do tell me) and we seem to have a very good partnership in this business, writing the book, articles, poems, etc. Occasionally people treat me as if I do understand technical details but the truth is I don’t. The combination of years and MS doesn’t make for technical wizardry, much as I would have wanted it to. Mary Smith 10 September 2013 This is great news! A long awaited social event for carers but you have to use it. Any carer can come to the lunches but only 12 places are available each time. Don’t forget that we can help with funding to look after your loved ones while you are away.
Susan Creese Granny’s Pantry Having to cook with stolen grubs Because as a child we had no subs (No food either) Domestic Science to give it its name Caused me detention, suffering and pain To bake a loaf you need slothThe raising agent High on the agenda in our house (“Give us your daily bread”, etc…) The foods for the feast All stolen from Granny's Pantry How to become a thief in one easy lessonFor the ingredients of the day The Sunday roast hurt me most Spuds and veg. away, from Granny’s Pantry But a loin or chop– no chance! Boiling an egg screwed with my head My only crime– education! This little soldier slipped through the pages of time In the library on detention– with no loin chop to roast How books meant so much more With the shame of stealing from Granny’s Pantry All for an education © Susan Creese 06 –10-13 Hot off the press! £750 grant for carers South Cornwall has secured a grant of £750 for carers lunches, the County Council grant is to allow carers to enjoy a lunch every month for the next six months. There are 12 places each month and to book your place please call the Carers Officer Karen Moore 01872 274188. The first lunch is on the 21st November at the Falmouth Hotel so book your place now! Open to all carers but first come first served.
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page ’s n a g e M Megan is having a busy time at school these days so it is sometimes difficult for her to send a story each month. Here’s one she wrote for us when she was only ten years old.
Megan at 10 years old
Tilly’s Bad Day In a world where no one knows, there are aliens, everything is the wrong way around. Tree stalks are green, and the leaves are squared and brown. The sun comes out at night, the moon comes out at day. The aliens themselves are very clever creatures, they put their clothes on the right way around and in the right place. They go to school, have jobs, shops, money and pets. You might be wondering what colour they are; purple with multi coloured spots. Their personalities are the same as ours. They live to about 100 years old! There’s a story I know about a little alien. One day there was a little alien called Tilly. Tilly was getting ready for school like she does every morning. She’s normally early and can watch some television, but today she was late! Her mum shouted up the stairs several times. Then Tilly would shout down, “coming”. When she finally got to school her friends were playing. She went to join them but on the way, she toppled over. She had a little graze on her leg, she went inside and the teacher put a plaster on it, when she was in the classroom the teacher did the register. Then they did art. They all had coloured paint. Tilly had red, green, blue, orange and yellow. She painted a picture of her house and 15
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garden, and got paint all over her face, in her hair and on her clothes. Next it was playtime, Tilly had buckle up shoes on and the buckle came off. So she had to wear her PE shoes instead. Then when they were back in the classroom, they did Literacy. She lost her pen, so she had to borrow the teachers pen. Then it was lunchtime. It was only then that she realised, she had left it on the dining room table, so she had to have school dinners. Tilly said to one of her friends, “it’s my bad day today”. Then they had history, they went to the tation room. Tations are like computers, it wouldn’t do anything whatsoever, so she had to share. On the way home, she fell in a puddle. Then when she got home, she fell on the step and banged her head! “This really is my bad day”, she thought. So you see, aliens are no different to us really, are they? The End
Tilly
South & West Cornwall branch MS Youth Group “Making Sense” The BF Adventure
We heard from Megan and Ben last month about there BF Adventure trip, here’s Lauren and Jamie's account of the day.
Next we did archery before Malcolm came to pick us up. Malcolm picked us up and took us to McDonald's for tea before dropping us home. I was tired but had a fantastic day and want to say a big thank you to Malcolm and our MS branch for organising this for us. Thanks Jamie. x
Yellow is Lauren’s favourite colour
Malcolm dropped us off at the BF Adventure and took a photo of us all in front of a map of the place. On the 28th We all went into a room to drop our bags August my two off and then went to our first activity. We all cousins Megan and Ben, My sister went on an assault course and I fell off the Lauren and I went tyres, luckily no-one saw me! Once we had changed into our wetsuits to the BF we chose whether we wanted to go in a Adventure day in canoe or a kayak. I chose a kayak and Penryn. Malcolm dropped us off and went in with Jamie, Megan, Ben and Seb took a photo of us the instructor. After lunch we went to the adventure in front of a map of the place. After we quarry and then we did some archery, went to a room to drop our bags off and playing a game called 'bake a cake' which make name tags. Once done we went to the low ropes where there was rope swings the girls won!! and an assault course. Next we went to the Malcolm picked us up and took us to McDonalds for tea, then dropped us canoes and kayaks. I chose a kayak and went in with Megan, Ben, Lauren and Seb. home. We all had a fantastic day and would like to thank Malcolm and our After the kayaks we had lunch. When we had finished lunch we went to the branch for organising this. adventure quarry. We went across a bridge Lauren and had to scream all the way across. (great fun).
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Botox is approved for use on the NHS in Scotland Scotland’s health watchdog has today recommended that botulinum toxin (known as Botox) should be funded on the NHS as a treatment for people with MS experiencing overactive bladder symptoms. The treatment is specifically for people who have not responded well to existing treatments, like anticholinergics. The decision by the Scottish Medicines Consortium (SMC) means that people with MS in Scotland should be able to receive the treatment on the NHS if they need it. Bladder problems affect around 75% of people with MS at some point, and while Botox will only be responsive in some, its approval for the NHS in Scotland is a welcome step in increasing the variety of treatment options that are available. How Botox works Botox is injected into the overactive detrusor muscle, helping it to relax, and reducing urinary: • frequency (when people need to urinate more often than normal) and • urgency (when people are unable to ‘hold on’). It is expected that most people will still need to self-catheterise while using the treatment. A welcome decision Ed Holloway, Head of Care and Services Research at the MS Society, welcomed the SMC’s decision: “Continence issues are extremely common in people with MS and this treatment could greatly improve the quality of life for those who are affected. "The MS Society funded one of the earliest trials using Botox for bladder control in MS and so we’re delighted to see it now being adopted on the NHS in Scotland.” What about people in England, Wales and Northern Ireland? There is currently no official requirement for the NHS to provide Botox in England.
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However, in August, England’s health watchdog NICE produced aguideline recommending the use of Botox by people with MS experiencing overactive bladder symptoms which have not been resolved with other treatments. A decision on the use of Botox is expected for Wales by the end of the year. Some patients in Northern Ireland are able to access the treatment, but as yet there’s no news on when it will be formally reviewed. Budgie attacks Jasper in garden during essential tea break
Jasper Rabbit was attacked by a budgie from one of Mike George’s descendants. Jasper was not harmed but was alleged to say something about roast budgie this weekend. His solicitors, Bunny and Bunny are looking into the case. Megan’s Cake As I indicated last month I was going to try Megan’s cooking by eating one of her cakes with my cup of tea. Megan did bake me a cake and the results were outstanding, it was delicious, the texture taste and presentation was excellent and it went well with my cup of tea. I do however have one criticism, there wasn’t enough of it and its all gone. Thanks Megan
South and West Cornwall events
Events taking place at Merlin MS Centre
Computer awareness day November 16th At Mike Georges, call 01872 862031 for details and booking Carers lunch 21st November Falmouth Hotel to book call: 01872 274188 Christmas Lunch Christmas lunch 2013 is on the 7th December at the Membly Hall Hotel Falmouth. Book your places with Chris Tel 01209 315386 Free for people with MS £5.00 for carers £13.00 for guests Lunch out somewhere How about meeting for lunch in different places within the South & West Cornwall area? We can arrange the venue the following areas and others if you wish: Hayle, Camborne, Redruth, Helston, Falmouth, Truro, Penzance. Here’s how it works: If there is enough response from you in a particular area we will book and pay for the venue and you pay for your meal. This is an opportunity for people to get together in their own part of South & West Cornwall and meet in a social environment. All would be welcome including your children, carers, family and friends. The decision is yours, if you are interested please drop me a line or email, If paying for your meal is a problem the call our support number 01872 274911 We look forward to seeing you at your location Malcolm G
Friday 29th Nov 7pm 50s and 60s Night at Tregony Village Hall £6.00 please phone 01872 530357 for more details Sat 30th Nov Merlin’s Annual Christmas Fayre at the centre. 10-2pm Sat 7th Dec Sing With The Stars, Padstow Church £15.00 Thurs 12th Dec 6pm A Time Of Thanks....A Place To Remember, join us for a special evening at the centre to celebrate the lives of those who are special to us. Dates and times subject to change. Sign up is open for the Grand Canyon TrekTrek- 10th-17th May 2014 Trek. Are you ready to experience the breath taking beauty of the Grand Canyon whilst raising money for the Merlin Ms Centre? With a year to fundraising you have plenty of time to join us for this trek of a lifetime. Contact the centre for more information 01726 885530. Looking for collectors Merlin MS Centre are looking for willing and friendly volunteers to help with their supermarket collection days throughout the year and throughout the county. If you think you can spare an hour or two to help then please get in touch with the centre on 01726 885530. Ellie May, Communications and Corporate Events Manager Tel: 01726 885530
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South & West Cornwall Branch Information
Branch contact details: Whispering Winds Crellow Hill Stithains Nr Truro Cornwall TR3 7AQ Tel: 01872 274911 www.mssociety.org.uk/southcornwall Satellite events 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: 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 month Carers meeting at Mike George’s Useful contacts: MS National Centre: 02084 380 700 MS Helpline: 0808 800 8000 Care Direct: 0800 444 000 NHS Direct: 0845 4647
Editors Contact details: details To send in articles or comments. Malcolm Glister Whispering Winds, Crellow Hill, Stithians, Nr Truro, Cornwall, TR3 7AQ
Chairman: Mike George Telephone: 01872 862031 email: cornishmike@talktalk.net Treasurer: Hilary Merton Telephone: 01872 863896 email: hilarym.southcornwallmssociety@aol.co.uk Address: 7 Agar Meadows, Carnon Downs, Truro, TR3 6HS. Voucher Admin Officer: Christine Sargent Telephone: 01209 315386 email: christine.southcornwallmssociety@live.co.uk Secretary: Richard Stevens Telephone: 01736 360551 email: stevens475@btinternet.com M S Support : Telephone: 01872 274911 Carer’s Officer: Karen Moore Telephone 01872 274188 email: Karen@kov500.wanadoo.co.uk Branch Profile manager and Magazine Editor: Malcolm Glister Telephone: 01209 860754 email: malcolmglister@btinternet.com Branch Web manager: Mike May Telephone: 01872 272 957 email: mikem.southcornwallmssociety@live.co.uk Membership: Betty Alderton Telephone: 01872 270901 email: betty.southcornwallmssociety@live.co.uk Minute Secretary: Moe Fisher email: moefisher@hotmail.co.uk Branch Safety Officer and Youth Team: Nikki Jenkin Telephone: 01736 787089 email: nikkijenkin@googlemail.com Fund Raising Officer: Marlene Richards Telephone: 01736 360551 email: stevens475@btinternet.com
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