The South & West Cornwall Branch of The MS Society February 2014 Magazine "The Lifeboat"

The

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South & West Cornwall

Branch

Monthly Magazine

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Page 11 Harbourside

Page 12 Carers lunch

Meeting at the Tregenna

Castle Hotel

Page 13 Someone please contact Alice! Page 14 Sent in by Susan Creese

Read-A-Thon news

Page 15 Megan’s page Page 16 Youth group Page 17 Cabaret Page 18 Events Page 19 Information page

Inside the Lifeboat this

month

MS News Page 3 Thousands missing out on social care Food banks become lifeline for disabled people as benefit changes hit

Page 4 Benefit changes affecting the health of disabled people MS SMART trials Get involved!

Page 5 Laona’s page

Page 6 Neurology Care Advisor

Page 7 Judy Reed Page 8 February Elsa Barker Brown Page 9/10 Quiz page

Don’t miss this opportunity to enjoy an evening with Fire ‘n’ Ice and friends.

Have a great two course meal and enjoy the evening entertainment, this function was arranged specifically for our new members in the west of Cornwall.

It is open to all who want to come so bring your friends, neighbours, relatives

or just pick someone off the street.

Call or email Malcolm for information or tickets:

Tel: 01209 860754

email: [email protected]

We look forward to seeing you there!

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Chairman’s Report

Editors Note

Welcome to my moan. With the new year well under way, it is time to ask you all as members what do you want from our branch. I ask this question because what ever we seem to put on in activities wise there is always such a poor take up from you all. The theme night proved a point, a very slow response almost resulted in cancellation. The meeting held in St. Ives for our new West members, again a very slow response which makes organising these events very difficult. The Des Coad campaign again only attracted about a dozen replies, which is very disappointing for myself and the committee

The committee and myself included, sometimes feel we are all wasting our time. So to end I must ask you all to be more pro active. Inundate Malcolm with articles for the magazine, Volunteer to help us with ideas and to keep this branch the most dynamic and forward looking one in the whole country and try to attend our activities. The saying of 'use it lose it ' keeps echoing in my head. The final thing I am going to ask you, is who likes Jasper? I find him rude, not a bit funny, big headed and I should know because my twin brother says all those things about me ! MikeMikeMikeMike

What can I say? So much going on and we need your support for the wonderful events available to you. 1940’s night on the 1st February and the Cabaret on the 1st of March, lets try and fill the seats, they are both fantastic evenings and put on especially for you so gather your friends and get your seats booked. Your committee is thinking of ways in which we can establish a continual legacy to ensure that the future of South & West Cornwall is safe and financially viable for the future and that we are able to sustain our services to our members. Fund raising is an ongoing issue with all voluntary organisations, not least the MS society. The services we offer cost tens of thousands of pounds each year, money that has to be raised by your committee.

There are many ways in which you can help your branch secure its future, I will be introducing some ideas in following editions of the lifeboat. For now though, please support us by attending the functions and events we arrange. On a lighter note, Jasper has been very quiet this month particularly after the comments from the chairman. He is a marmite character, you love him or hate him. Whatever your choice he is here by popular demand. It was good to see so many people at our meeting on the 19th January at the Tregenna Castle Hotel. The day went really well and we gained quite a few members as well as informing members about their new branch. The feedback was positive and we will be acting upon it so watch this space!

MMMMaaaallllccccoooollllmmmm

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News from the MS National Centre

Thousands missing out on social care

A report released today by the Care and Support Alliance, of which the MS Society is a member, has found half a million older and disabled people in England who would have received social care five years ago now receive no local support. The findings have been released to coincide with the Care Bill, which is being discussed by MPs in Westminster today. The CSA is calling for a rethink to suggested changes to restrict who gets social care support, and to address the funding crisis in local social care. Restricted care The study, carried out by the London School of Economics, examined the social care system over a five year period (2007/8 – 2012) and found the number of people receiving support from councils with tasks such as getting up, getting dressed and getting out of the house has plummeted for five years in a row – by a total of 347,000 since 2008. Adjusting for socio-demographic change, this is equivalent to 483,000 older and disabled people, who need support for basic tasks like getting washed and having a meal, and the families that care for them, being locked out of the social care system. Of the 152 councils in England, government figures show 86% now offer care only to those with the highest level of needs – deemed as 'critical' or 'substantial' needs.

It means older and disabled people who are unable to undertake several aspects of personal care, or of work, education or training are no longer eligible for council funded care. Limitless care costs The Government is planning to restrict the number of people who can benefit from the new social care system – those deemed as not having 'critical' or 'substantial' needs will need to pay for their own social care, with no cap on this. The CSA is calling on the Government to set the eligibility level to 'moderate'. The final decision on where the national threshold will be set will be published for consultation in spring next year and voted on in autumn 2014.

Food banks become lifeline for disabled people as benefit changes hit

Disabled people hit by changes to the benefits system are having to rely on food banks, according to a coalition of disability charities. The Disability Benefits Consortium (DBC), which is made up of 50 charities and other organisations such as the MS Society, Leonard Cheshire Disability and RNIB, is warning today that the situation will get even worse as the government implements more changes. Reliance on food banks The DBC's survey of nearly 4000 disabled people reveals that more than one in ten (12 per cent) of those hit by housing benefit changes – such as the ‘bedroom tax’ – have needed to use food banks to feed themselves and their families. Changes to council tax have hit some disabled people hard, increasing the amount of money they have to pay when they were previously exempt. A similar number of people affected by those cuts – 9 per cent - have needed to use food banks.

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Among those people unfortunate enough to be affected by changes to both housing benefit and council tax, as many as 15 per cent are using food banks. The DBC is warning the government that even more disabled people and their carers are going to be forced to rely on food banks as benefit changes continue to come into force. Urgent investigation by government needed Claire Nurden from the MS Society, and Co-Chair of the DBC said: “The combined impact of the changes to the benefits system will be nothing short of devastating for many disabled people. It’s extremely worrying that disabled people are already being forced to rely on food banks. With many of the cuts yet to kick in, the situation can only get worse from here. "The government must carry out an urgent investigation into the impact of the welfare changes on disabled people, and rethink the way these plans are being implemented."

Benefit changes affecting the health of disabled people

Reforms to the benefits system are affecting the health of disabled people, the MS Society has today warned. New research shows more than half (52%) of the 1476 people with MS surveyed by the Disability Benefits Consortium (DBC) between July and October 2013 said their anxiety over the changes to the benefits system is affecting their health. More than two thirds (67%) of those with MS surveyed also said they felt more anxious about how they will manage their condition in the future because of changes to the benefits system. Major flaws in new benefits system The concerns follow a year which has seen a major overhaul of Disability Living Allowance (DLA) to the new benefit, called Personal Independence Payment (PIP), and the continued roll out of the out of work disability benefit,

Employment Support Allowance (ESA, formerly Incapacity Benefit). The reforms have seen thousands of people with MS and other degenerative health conditions incorrectly told that they’re fit for work, or that they will ‘recover’ enough to work again; the rate of successful appeals on ESA decisions is approximately 40%. Meanwhile, the criteria for the highest rates of the new Personal Independence Payment are so tight that people could be left trapped in their homes because they’ll lose access to vital mobility equipment. MS Society call for overhaul We are now calling for: • An overhaul of how the assessments for these benefits are carried out – including greater emphasis on gathering evidence about people’s conditions. • A complete rethink of how people with long-term, degenerative conditions are treated when applying for out of work benefits. • A u-turn on the decision to tighten the criteria for the highest rates of PIP.

The MS SMART trials are soon to take place. There are 15 trial sites around the UK, one of which is the Royal Cornwall Hospital and we are looking for someone to be quoted in the press release about this trial site. We just need someone who has secondary progressive MS, but they don’t need to be involved with the trial. As long as they’re happy to briefly chat with me and be quoted in the press release. It would just involve having a brief chat with me over the phone and speaking a little about your diagnosis, symptoms, and how you would feel about a possible treatment that could slow MS progression. We will be pursuing media coverage in spring next year, but dates are still being confirmed. AliceAliceAliceAlice Lewis Lewis Lewis Lewis Communications Assistant | MS Society SSSSeeeeeeee ppppaaaaggggeeee 11113333

MS SMART trials

Get involved!

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Laona’s page

It has been a busy past couple of months, for all I am sure. Food, which has always been a passion and is now something of an addiction, creating and experimenting with recipes, although quite often frustrating is also hugely rewarding, even I with all my food enthusiasm, am feeling a little food overload, a little cooked out!. Thankfully the days are gradually getting longer and I know that in a few weeks time, when I look out onto the garden there will be the first splashes of sunny yellow and then spring is not far behind. This past month I have also found myself another year older and hopefully a little wiser!. Certainly, I know more about my body and what I should be eating to give it a fighting chance. So with spring in mind and thoughts of what we all should be eating more of, I am going to ignore the chocolate cravings and the continuing urge for comfort food and try to have some super healthy food. You might not feel the need for some extra fruit and veg but your body will thank you for it. If you, like me, are feeling the need to recharge those batteries or are suffering from prolonged winter sniffles, then here are two vitamin and antioxidant packed, immune boosting recipes. I am hope I can tempt you to try one and hopefully both, they're delicious and absolutely no cooking required, bliss !

Super C smoothieSuper C smoothieSuper C smoothieSuper C smoothie This really is a super, antioxidant, immune boosting smoothie, packed full of vitamins C, A, and K with lots of other good stuff too!. • 4 cavolo nero leaves, chopped • 1/2 a medium beetroot, chopped • 1 x 1cm thick slice pineapple, chopped • juice of 2 oranges 1. Put all the ingredients into a blender and blitz until smooth.

Makes about 300ml Gloriously green Gloriously green Gloriously green Gloriously green smoothiesmoothiesmoothiesmoothie This smoothie is not only packed full of flavour but packs a punch nutritionally as well. • 2 kiwi, peeled and chopped • 1apple, peeled and chopped • 20 green grapes • 2 handfuls of mixed watercress and spinach leaves

• 100ml apple juice 1. Put all the ingredients in a blender and blitz until smooth.

Makes about 400ml

Don’t forget to book your Don’t forget to book your Don’t forget to book your Don’t forget to book your

tickets for the Cabaret on the tickets for the Cabaret on the tickets for the Cabaret on the tickets for the Cabaret on the 1st March see page 171st March see page 171st March see page 171st March see page 17

Free for people with MSFree for people with MSFree for people with MSFree for people with MS

£5 for carers£5 for carers£5 for carers£5 for carers

£10.00 all others£10.00 all others£10.00 all others£10.00 all others

£6.25 Children 2 to 12 years£6.25 Children 2 to 12 years£6.25 Children 2 to 12 years£6.25 Children 2 to 12 years

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The Merlin CentreThe Merlin CentreThe Merlin CentreThe Merlin Centre Hewas Water, St Austell The first Monday of the Month starting Monday 3rd February 2014. 1.30pm—4.30pm Hayle Day CentreHayle Day CentreHayle Day CentreHayle Day Centre Commercial Road, Hayle The last Tuesday of the month Starting Tuesday 25th February 1.30pm—4.30pm

Neurology Care AdvisorNeurology Care AdvisorNeurology Care AdvisorNeurology Care Advisor DropDropDropDrop----in Advice Sessionsin Advice Sessionsin Advice Sessionsin Advice Sessions

At Hayle Day Centre At Hayle Day Centre At Hayle Day Centre At Hayle Day Centre and The Merlin Centre, St Austelland The Merlin Centre, St Austelland The Merlin Centre, St Austelland The Merlin Centre, St Austell Hayle the first Monday of the monthHayle the first Monday of the monthHayle the first Monday of the monthHayle the first Monday of the month

The Merlin Centre the last Tuesday of the monthThe Merlin Centre the last Tuesday of the monthThe Merlin Centre the last Tuesday of the monthThe Merlin Centre the last Tuesday of the month

The Neurology Care Advisor will be holding drop in sessions at Hayle Day Centre and The Merlin Centre in St Austell to offer advice, support, information and signposting to anyone affected by a neurological condition. Please pop in for an informal chat and for advice about anything that may be concerning you. The advice session will run from 1.30pm—4.30pm on a non-appointment basis. Please telephone Mary Eason on 01209 318106 if you require further information. Please note that medical advice will not be given although information and sign posting to the most relevant health professional can be provided. Sessions will not be held on Bank Holidays.

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Read this, let it really sink in - then choose John is the kind of guy you love to hate. He is always in a good mood and always has something positive to say. When someone would ask him how he was doing, he would reply, 'If I were any better, I would be twins!' He was a natural motivator. If an employee was having a bad day, John was there telling the employee how to look on the positive side of the situation. Seeing this style really made me curious, so one day I went up and asked him, 'I don't get it! You can't be a positive person all of the time How do you do it?' He replied, 'Each morning I wake up and say to myself, you have two choices today. You can choose to be in a good mood or ... you can choose to be in a bad mood I choose to be in a good mood.' Each time something bad happens, I can choose to be a victim or...I can choose to learn from it. I choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining or... I can point out the positive side of life. I choose the positive side of life. 'Yeah, right, it's not that easy,' I protested. 'Yes, it is,' he said. 'Life is all about choices. When you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people affect your mood. You choose to be in a good mood or bad mood. The bottom line: It's your choice how you live your life.' I reflected on what he said. Soon thereafter, I left the Tower Industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it. Several years later, I heard that he was involved in a serious accident, falling some 60 feet from a communications tower. After 18 hours of surgery and weeks of intensive care, he was released from the hospital

Sent in by Judy Reed with rods placed in his back. I saw him about six months after the accident. When I asked him how he was, he replied, 'If I were any better, I'd be twins. Wanna see my scars?' I declined to see his wounds, but I did ask him what had gone through his mind as the accident took place. 'The first thing that went through my mind was the well-being of my soon-to-be born daughter,' he replied. 'Then, as I lay on the ground, I remembered that I had two choices: I could choose to live or...I could choose to die. I chose to live.' 'Weren't you scared? Did you lose consciousness? 'I asked He continued, '...the paramedics were great, they kept telling me I was going to be fine. But when they wheeled me into the ER and I saw the expressions on the faces of the doctors and nurses, I got really scared. In their eyes, I read 'he's a dead man'. I knew I needed to take action' 'What did you do?' I asked. 'Well, there was a big burly nurse shouting questions at me,' said John. 'She asked if I was allergic to anything 'Yes, I replied.' The doctors and nurses stopped working as they waited for my reply. I took a deep breath and yelled, 'Gravity'' Over their laughter, I told them, 'I am choosing to live. Operate on me as if I am alive, not dead.' He lived, thanks to the skill of his doctors, but also because of his amazing attitude... I learned from him that every day we have the choice to live fully. Attitude, after all, is everything . Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34. After all today is the tomorrow you worried about yesterday. You have two choices now: 1. Ignore this. 2. Tell it to the people you care about. (You know the choice I made.)

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February Over the last couple of months we have had Christmas, New Year’s day/night parties, Burns’ Night; all times of celebration which so often mean FOOD. I didn’t eat any mince pies or Christmas pudding, nor ‘neeps ‘n’ tatties with haggis on Burns’ night, although I will admit to more than a few chocolates...and nuts...and, ... (well, you can’t just ignore them can you?) This can be such a grey, dismal time of year, what can we celebrate in February to tempt our jaded palates? On 2nd the Chinese New Year starts. So as in our household we love Chinese food I think we could do a lot worse than start the month celebrating the year of the horse. No I’m not planning on eating one but a good ‘take-away’ could well be on the cards! Then, of course there’s Valentine’s Day on Friday 14th. I wouldn’t mind being taken out for a romantic meal – any offers? No? Oh well never mind, I guess I can make one at home for the two of us. Whatever happened to my New Year’s Resolution? Oh yes, I said I wouldn’t mention them didn’t I. Now – another thought..... A young couple moved into a new neighbourhood. The next morning while they were eating breakfast, the young woman saw her neighbour hanging the washing out. "That laundry is not very clean; she doesn't know how to wash correctly. Perhaps she needs better detergent," she observed. Her husband looked on, saying nothing. Every time her neighbour hung her washing out, the young woman made the same comments. A month later, the woman was surprised to see a nice clean line of washing and said to her husband: "Look, she's finally learned how to wash correctly. I wonder who taught her." The husband replied, "I got up early this morning and cleaned our windows."

And so it is with life... What we see when watching others depends on the clarity of the window through which we look. God bless!!

The Copy Family: Chapter 1The Copy Family: Chapter 1The Copy Family: Chapter 1The Copy Family: Chapter 1 When the Real family came to live in the new house, they found a family already there………an exact copy of their family. In the house there was an identical father, mother and son. The Copy family members stood each in a room alone, unblinking. The Copy family wouldn’t speak when spoken to, even though they had a heartbeat and they were breathing although their eyes were wet and strained with strain. The Real father flicked the arm of the Copy father to see him flinch there by the window in the kitchen. A window where on so many coming days the Real father would look out onto the yard, the yard where the Copy family had moved to see the colour changing sky. The Real father noticed the Copy father wore many rings, rings so large that Real father was able to make out inscriptions, scrolling the Copy family’s thoughts………….. ‘This is my house’ ‘This is our house’ ‘This is where I am’ To be continued EEEEllllssssaaaa BBBBBBBB

Elsa Barker Brown

This is: Elsa Barker-Brown, do you remember that Elsa raised lots of money for our branch, and is also a great supporter of the Read-A-Thon. Elsa attends Truro School and writes stories. This one is called “The Copy Family”

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February quizFebruary quizFebruary quizFebruary quiz January Quiz answersJanuary Quiz answersJanuary Quiz answersJanuary Quiz answers

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What’s this mystery object?

1 Mane 2 For camouflage 3 Capuchin 4 Prince Alfred's deer 5 Rocket frog 6 Mob 7 Squeak 8 6 inches

Unscramble the letters to reveal actors/actresses who starred in romantic films

1 RTAG UGHNH 2 ECAGRRR EIHD 3 ROSJB UALEIRT 4 LFNOH RCIIT 5 HCMIMRU EACTTNOCNE 6 GIEEN KKYILHRTA 7 ANIE OSLENM 8 TNOM MAEOHMSP

Did you spot the 12 differences?

Happy birthday to: 21st Louvaine Chinn 22nd Crystyn Day 27nd Keith Shirley

This is Fluffy

He is the destroyer of worlds

Target £2,000.00

Actual to date £1,100

House Money Boxes

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January mystery object

AcrossAcrossAcrossAcross

1111 Gift (7) 5555 Fabric (5) 8888 Sharp (5) 9999 First course of a meal (7) 10101010 Blow up (7) 11111111 Sorrowful poem (5) 12121212 Northern Ireland (6) 14141414 Deft (6) 18181818 Film (5) 20202020 Wooed (7) 22222222 American reindeer (7) 23232323 One of the Marx Brothers (5) 24242424 Permit (5) 25252525 Underground passages (7)

DownDownDownDown

1111 High level ground (7) 2222 Fit out (5) 3333 Blot on the landscape (7) 4444 Slates (anag.) (6) 5555 Pursue (5) 6666 Very active (2,3,2) 7777 Hasten (5) 13131313 Reveals (anag.) (7) 15151515 Eldest son of a French king (7) 16161616 Tiresome (7) 17171717 Pronounce not guilty (6) 18181818 Holy city of Islam (5) 19191919 Arm joint (5) 21212121 Rich sweet cake (5)

February Crossword

Answer to January Crossword

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Exercising within water promotes Balance Core stability Overall strength Soothes joint pain and muscular spasms Encourages body conditioning and general wellness Is pain free and low impact Helps rehabilitation Is a Stress Reliever

“From birth, man carries the weight of gravity on his shoulders…but man only has to sink beneath the surface and he is free”- Jacques Cousteau Elizabeth, a Physiotherapist with experience and a passion for Hydrotherapy will make a full assessment before taking you into the water with a bespoke exercise and relaxation plan tailored to your needs. You can follow this up with regular appointments, use the plan and follow it yourself in the pool, join an MS patient group session or combine all of the above. You are also welcome to use the pool with referrals from GPs, other Physiotherapists and the Hydrotherapy team at Treliske. Shared use of the pool is £5 per session with a maximum of four in the pool at any time or you can hire the pool privately for £20 per ½ hour session and have it solely for your own use. A one hour full assessment, tailor made exercise and relaxation plan and instruction in a 30 minute hydrotherapy pool session with our physiotherapist is £40. Follow ups to this are £30. We will also be starting exercise groups in the pool to complement our land based Pilates and Exercising from Scratch classes. Group classes are a great way to meet different people and we encourage everyone to finish off with a social gathering.

New Hydrotherapy pool open to the public in West Cornwall Harbourside Physiotherapy is pleased to announce the opening of our new Clinic and Hydrotherapy pool in Newlyn in our 10th Anniversary year. We have a long history of working with MS patients on land and in other pools with one of our Chartered Physiotherapists Elizabeth Laity running group and individual sessions. The clear benefits of hydrotherapy for many conditions including MS have led the clinic owner Claire, who is currently working for MS Australia to push forward with her dream to be able to provide this service for West Cornwall. The brand new purpose build Clinic with disabled parking directly outside and a fully accessible building and pool area provides an invaluable service in a contemporary setting, the lovely ambience created enables patients to enjoy the therapy they are receiving. The saltwater pool is accessed via steps with a handrail or a chair hoist with the seat detaching to be wheeled to and from the changing rooms. There is a wonderful massage jet to enjoy and a counter current jet to work or swim against which can be adjusted to suit individual needs. The pool is one depth and has handrails all the way round it, useful for exercising and stretching as well giving peace of mind to the less water confident. The pool is warmed to 34 Degrees and the air temperature is 31 Degrees so there are no chilly changing rooms at Harbourside! The buoyancy and warmth of our saltwater pool counteracts the pressure of gravity, reducing bodyweight by up to 90% and releases the stress and pressure on weak muscles and joints by cushioning movement.

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Ai Chi, (Tai Chi in the water), Swim and Stretch, Aqua Natal and Swim Fit are all about to start and we would welcome any suggestions for classes from you. Moving to our new clinic has enabled us to expand the services we offer our clients including Acupuncture, Podiatry, and Water Ballet. We are also pleased to welcome Physiotherapist Jane Bolt and Musculoskeletal Podiatrist Beverley Bowring to the experienced team of physiotherapists at Harbourside. Our philosophy is simple: a prompt, safe return to full function. Please contact Harbourside to book a Physiotherapy session or for more information about what we do. Tel 01736 366224 or Email [email protected]

Carers lunch

January’s carers lunch was held at the Premier Inn, Camborne, a great time was had with lots of conversation and good company. If you want to join the carers group contact Karen 01872 274188. The next carers meeting is on the third Thursday in February at Mike Georges Penthouse

Meeting at the Tregenna Castle Hotel

Our branch meeting at the Tegenna Castle Hotel was a great success and very well attended.

The meeting started with a presentation of South & West Cornwall branch aims and objectives followed by an open forum for discussion. Suggestions from members were noted and will be developed where possible. Several people joined the branch at the meeting and it was decided to have another in 6 months time to assess progress. Many thanks to all those who attended.

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From page 4 Someone please contact Alice!

The Story: MS hope from 'off-the-shelf' drugs By Helen Briggs BBC News

About 500 people with late-stage MS are to enrol in clinical trials in England and Scotland to see if three common drugs can slow disease progression. Research suggests the medicines may protect the brain from further damage. There is currently no treatment for secondary progressive MS. Treatments are available to help with relapses and symptoms of MS during the early stages of the condition. However, despite clinical trials, scientists have so far failed to find a medicine that works in the late stages of MS. Now, after reviewing published data on drug treatments that might help protect nerves in the brain, UK researchers are focusing on three drugs that are licensed for other conditions. The three drugs are amiloride - currently licensed to treat heart disease and high blood pressure; ibudilast - an asthma drug used in Japan - ; and riluzole, the sole treatment for motor neurone disease. All have shown some promise as a treatment for MS in small-scale trials. Participants in the larger trials in London, Edinburgh and 13 other sites in the UK will be monitored for signs of progression of MS with scans and other clinical tests. Dr Jeremy Chataway is consultant neurologist at University College London, which will carry out the London study. He said the drugs selected are the most promising candidates for testing to see if they have an effect in slowing the progression of MS. He told BBC News: "There is no treatment for secondary progressive MS.

This is a really appropriate and scientific way of getting a pipeline of drugs so that we can one day get a treatment that works." Patients entering the trial will be given brain scans at the beginning and end of the two-year study to see whether the drugs have an effect on slowing down brain tissue loss. "We hope at least one of these drugs will show that it significantly reduces the rate of brain loss - we're hoping for 30% or 40% reduction," he added. Step forwardStep forwardStep forwardStep forward The MS-SMART trial, as it is known, will test the three drugs against a dummy treatment (placebo) in 440 people with secondary progressive MS. Dr Susan Kohlhaas, head of biomedical research at the MS society, said: "People with MS have lived for years in hope that one day we will find an effective treatment for secondary progressive MS; this trial, although still early stage, takes us one step closer to make that hope a reality." Commenting on the approach to the research, Prof Jayne Lawrence, chief science adviser for the Royal Pharmaceutical Society, said finding new medical uses for existing drugs offered hope to patients. Aspirin, for example, had found many therapeutic uses - as a painkiller and in preventing strokes and heart disease, she said. "It's becoming much more popular now because it costs so much to develop a [new] drug. At least you've got an idea of what the toxicity is so you can reduce the time it takes to develop the drug." The research is funded by the Medical Research Council and the Multiple Sclerosis Society.

Read-A-Thon news

14 6 14 JJJJaaaassssppppeeeerrrr

Information

If you have secondary progressive MS here is an opportunity to get involved and help the profile, awareness and resource development of the MS Society, without too much difficulty. Your input is important to the future development of treatments and finding a cure for people affected by MS so please help. The MS SMART trials are soon to take place. There are 15 trial sites around the UK, one of which is the Royal Cornwall Hospital and we are looking for someone to be quoted in the press release about this trial site. We just need someone who has secondary progressive MS, but they don’t need to be involved with the trial. As long as they’re happy to briefly chat with Alice and be quoted in the press release. It would just involve having a brief chat over the phone and speaking a little about your diagnosis, symptoms, and how you would feel about a possible treatment that could slow MS progression. We will be pursuing media coverage in the spring, but dates are still being confirmed. If you would be kind enough to help please contact Alice direct— email: [email protected] Direct Tel No 020 8438 0807 Switchboard 020 8438 0700 Alternatively contact me (your editor) and I will arrange for Alice to contact you. Thank you in anticipation of your help MalcolmMalcolmMalcolmMalcolm

I would help if I could. Please contact Alice, we need your help! I have a friend called Alice, she lives in Wonderland!

White Poplar A White Butterfly rides the gray buffalo in spirit of the hawk—yurt ivory tat

The Straw man enters into the red tepee. No door but a wall with no gap

chimney cloud rising in the bare headed slave

Two angels with flaming swords: falcon headed man

a lost world in a chimney stack attack Blue black butterfly eats an apple and

the Japanese cherry tree eats the red ape man

chimney smoke cloud rising in the bare headed slave

A field of strawberry with violet’s in the spirit of the hawk—yurt ivory tat together with the three legged red crow

a field full with white poplar sap chimney smoke cloud rising in the bare

headed slave Chubby cheeked infant suckling the cherry in the spirit of the hawk—yurt ivory tat the light flaming purple pearl peacock

feather spark illuminations in the white poplar sap chimney smoke cloud rising and the slave

now wears a hat

© Susan Creese

Sent in by Susan Creese

Schools are still receiving money from students who took part and donations from none participants. I will report when all entries are in and I can constructively report our findings

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When war hit home... I still think back to the days when we were all together. Our family, just the five of us, living in our cramped London home. We didn’t care about how small it was, it was our home, and it always would be. That was until Great Britain declared war on Germany. The day that changed my life and not just mine, but nearly everybody in the whole world, and not for the better. I still remember the day it happened, we were all sat by the radio, my mum doing her knitting, my father reading the mornings newspaper, and my two younger siblings playing with their toys on the floor, and me? Well I was sat in the chair reading. Yes I know not really the most exciting thing, but for me it’s an escape, I can escape all of the drama, all of the anxiety of the prospect of there being a war.

And then came the broadcast, Winston Churchill’s voice telling us that there would in fact be a war. You could see the panic in my parents eyes, no matter how hard they tried to mask it, I could still see it. Our lives may never be the same again. A few months later... They have now started taking volunteers for the British army, and there has been word that all city children will get evacuated to the country. Mother says that we should all be living close to each other so I can go and see my little brother and sister anytime I wish. I suppose the prospect of still being able to see at least two of my family members makes the thought of it a little better but it doesn’t help with the fact that I may never see my mother and father again. Another few months... We have now been evacuated, to Cornwall, We have just got into our ‘new home’ but this will never be home,

Megan’s page

Megan’s page

Megan’s page

Megan’s page

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South Cornwall branch

MS Youth Group West

“Making Sense”

JJJJaaaassssppppeeeerrrr

Prize bingo in aid of different charities is held once a month at St Just football club. Jamie, Anna, Muriel (my mum) and myself all go along and support this. The charities are changed every 3 months and are chosen by those attending.

Jamie has nominated our branch as one of the charities for the next 3 months ( Feb, March and April) Look out in May’s edition of The Lifeboat to see how we got

on. Thanks Jamie!!! Until next month, Happy Valentines Day Nikki xx

my home is in London with mother father and the twins. On the other hand the couple I’m staying with are very nice and kind towards me and treat me well. Also I live just five minutes away from the twins so I can see them on a regular basis. I’ve already written a letter to mother telling her about where we’re living, and how nice the couple are. I also asked how her and father are doing, I do hope there okay. The lady, Sarah, said she will pop down to the post of-fice tomorrow morning to post the letter to mother for me. I do hope this war ends soon. I just want to get back to London and see my family, and we can all be happy in our cramped London home. I’d give anything to be there now... To be continued....

Jaspers points of view Great story Megan, I can’t wait for next months edition, we appreciate you taking time from your studies. We have some talented young people in our branch with Megan’s page and Elsa’s story on page 8. I have heard on good authority that Lauren is going to send something in to. Of course I am more of a story teller, a master of tall tales.

Competition

We are looking at ideas for a competition that we can run for all the youth in South & West Cornwall branch. The competition needs to be simple and easy to run, send your ideas to Jasper via Malcolm your magazine editor and they will be considered. Two age groups: 8 to 11 years old and 11 to 15 years old. Suggestions must come from young people but adults can help with sending them in. We look forward to hearing from you.

The Youth GroupThe Youth GroupThe Youth GroupThe Youth Group

A cabaret evening with

Your name and address (printed) ……………………………………………………………………………………………... ………………………………………………………………………………………………… Dietary requirements

………………………………………………………………………………………………... I would like tickets for the Fire ‘n’ Ice Cabaret on 1st March 2014 Please indicate number of wheel chair spaces required: - Number

None

On the 1st March 2014, at the Tregenna Castle Hotel, St Ives. The evening is open to all and consists of a meal and entertainment. The Details : Date: To be held on a Saturday 1st March 2014. Venue: Tregenna Castle Hotel, St Ives The Meal: Two course meal, Roast Beef with dessert (Vegetarian option). Programme: 7.15 for 7.45 Meal Entertainment from 9.00pm till 11.00pm Entertainment: Fire ‘n’ Ice - popular Duo, plus star guests: Ruby and Megan Raffle in aid of MS plus Lucky ticket draw. Total Price: Free for people with MS, £5.00 for carers, £10.00 for all others, £6.25 for children’s menu 2-12 years old All are welcome A special rate of £45.00 per person bed & breakfast is available, quote: Fire ‘n’ Ice when booking. If you wish to attend please complete the return slip below and send it with your remittance to:- Malcolm Glister, Whispering winds, Crellow Hill, Stithians, Nr Truro Cornwall TR3 7AQ Tel 01209 860754 Email: [email protected] Please make cheques and orders payable to MSS Society (do not send cash). You will receive confirmation of purchase and the tickets will be held on the door for you on arrival unless you state otherwise.

Ruby Megan

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Events taking place at Merlin MS Centre

Sign up is open for the Grand Canyon Sign up is open for the Grand Canyon Sign up is open for the Grand Canyon Sign up is open for the Grand Canyon TrekTrekTrekTrek---- 10101010thththth----17171717thththth May 2014 Trek.May 2014 Trek.May 2014 Trek.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 collectorsLooking for collectorsLooking for collectorsLooking 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

South Cornwall

Branch events 2014

An indoor mobility scooter This scooter is for indoor use and the garden only, it is not intended to go on the main road. It will fit in-between any standard interior door. It runs on two 12 volt 12 amp batteries which have been replaced for new. This scooter was bought April 2013 and only used once. It will break apart and fit most car boots. It will carry up to a 17 stone person. This was £1495 when bought in April I would like £800 ono. Contact Brian Roscoria on 07930528613

or [email protected]

The Go Chair

1st Feb 1940’s night call: 01209 860754

8th February Branch Annual Meeting

1st March Cabaret at the Tregenna

Castle Hotel see page 17

Garage Sale in April at Mike Georges house look out for further information.

Following our branch meeting on the 19th January we will be holding social events in the west:

Get togethers

Theme nights

Cabaret’s

Fund raising activities

look out for details in the lifeboat

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 Helpline: 0808 800 8000 Care Direct: 0800 444 000 NHS Direct: 0845 4647

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

Need help or advice, call our support number 01872 274911

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] Secretary: Secretary: Secretary: Secretary: Richard Stevens Telephone: 01736 360551 email: [email protected] M S Support : M S Support : M S Support : M S Support : Telephone: 01872 274911 Carer’s Officer: Carer’s Officer: Carer’s Officer: Carer’s Officer: Karen Moore Telephone 01872 274188 Branch Profile manager and Magazine Editor: Branch Profile manager and Magazine Editor: Branch Profile manager and Magazine Editor: Branch Profile manager and Magazine Editor: 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 Lauren & Alex [email protected]