The South Cornwall Branch of The MS Society June magazine 2013

June 2013

The Lifeboat

South Cornwall Branch Monthly Magazine

Cover page: I always make two or three designs for the front cover which give me choices but this time I was debating for some time which design would be on the front cover.

I thought that we needed some summer colour to cheer us up so I chose to put them all in. Consider them a bouquet of flowers from me

at Inside the Lifebo this month MS News Page 3 Legal review into decision to tighten PIP mobility qualifier MS care lottery revealed by ground breaking MS Society research Page 4 MS Society volunteer survey MS Society announces new research projects

Page 12 Henry’s marathon Anthony Rogers South Cornwall Branch and the CAB Page 13/14 Malcolm and Jackie’s Northern Lights trip Page 15 Megan’s page

Page 5/6 Life isn’t Fair!

Page 16 Youth group

Page 7/8 members page

Page 17 Read-A-Thon

Page 9/10 Quiz page

Page 18 Events

Page 11 Young people and newly diagnosed group

Page 19 Information page

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Chairman’s Report Dear members, sadly, I am thinking that It is time for me to retire as your Chairman and my thoughts are to join our treasurer Malcolm and leave in December.

I know it may be considered early in saying I may be leaving but I am keen to see branches in Cornwall develop and grow together and if this does not appear to happen over the next few months then I fear my time as the chairman of South West Cornwall will be over.

I would urge each branch to take the opportunity to work closely with each other for the good of our MS community.

On a lighter note I must remind all our carer's that our summer lunch is booked at the Falmouth Hotel on 20th of June 12.30 for 1.00pm. It is a lovely venue to have our subsidised meal with us all sitting around a round table which we find very conclusive to enable us all to feel part of a team.

I would also like to encourage other carers to join our group just give me a call.

Mike Editors Note Hello everyone, Well, as usual its all happening here in Cornwall, with Mike thinking of leaving and myself not far behind, if not before.

We need to see some positive development in our Cornwall branches if we are to survive well into the future. The first county branch executive meeting is at the end of May, after this edition of the Lifeboat goes to print.

The meeting will hopefully bring some structure to Cornwall’s branches working together and even merging in some cases, this of course will have to be seen.

Certainly my future with the MS society depend on the executive committee outcomes. I will report on the meeting in the July addition of The Lifeboat.

Talking about lifeboats we must not forget the South Cornwall motto “South Cornwall consider themselves to be a lifeboat ready to be launched for anyone affected by MS” To live up to this statement we need to hear from you, don’t let issues get you down, we

are here to help you and we are good listeners.

On a lighter note, don’t forget to book in for your makeover on the 29th June, myself and Jasper are already booked in and after the makeover we are having our photo taken.

So come and enjoy the afternoon, meeting people, eating food and having a good laugh.

Our thoughts go to Alan Sargent who is in hospital after a fall, we wish him well and a speedy recovery.

Your letters and articles are coming through well and I fit as many in as I can. they will always be published but don’t be despondent if they do not appear for a month or two.

There never seems to be enough room for everything to be said and here I am coming to the end of my editors notes. Look out for my report on the first executive committee meeting, there's a great deal hinging on its success, please make contact if you have something to say about what is happening in your area or you need clarification on anything at all. Malcolm 2

News from the MS National Centre Legal review into decision to tighten PIP mobility qualifier A campaigner has succeeded in his fight for the High Court to conduct a judicial review of the decision made by the Department of Work and Pensions’ (DWP) to introduce stricter criteria for people for the mobility component of PIP. Earlier this year the DWP changed the distance people had to walk to qualify for the enhanced rate mobility component of the disability benefit from 50 metres to 20 metres. There was no public consultation on this decision.

Over 95% of people with MS currently receive the higher rate of the mobility component ofDLA– soon to be changed to PIP – which often allows people with mobility problems to pay for an adapted car, use taxis or purchase walking aids to help them remain mobile and independent.

What is a judicial review?

Individuals and organisations can seek a judicial review if they think a decision by a public body – like the DWP – has been made unlawfully.

The review, carried out by a judge, looks only at the way the decision was reached, rather than whether it was correct or not.

If the High Court decide the decision to change the walking distance was unlawful, this could lead to a reconsideration of this part of the assessment criteria for the benefit.

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Challenging the DWP’s decision Steven Sumpter does not have MS but his actions could benefit thousands living with the condition across the UK. His disability means he can only walk a few metres with a stick. He was assessed as eligible for the higher rate of the mobility component for DLA but is worried that in the new changes under PIP mean he’ll miss out on this vital benefit, especially as he did not have a chance to put his views to the DWP. Steven is working with Public Law Solicitors to take the decision to court.

Karen Ashton from Public Law Solicitors is representing Steven. She said: “The higher rate of mobility benefit can make an extraordinary difference to a disabled person’s life. But the Government failed to mention the reduction to 20m in their consultations and so those who might be affected did not have the chance to put their case and explain how devastating the consequences will be.”

MS care lottery revealed by groundbreaking MS Society research Alarming numbers of people with MS in the UK are facing a lottery when it comes to accessing the care and support they need to manage their condition.

Our report, A lottery of treatment and care: MS services across the UK, is published today to mark the start of MS Week. It uncovers major disparities across the UK in access to MS medicines, social care support, employment support and health professionals for people with MS. Find out more about our MS Week campaign It found: • 6 out of 10 eligible people with MS are not taking a disease modifying drug for their condition • Just two in 100 people with MS use one of two licensed symptom management treatments

If you have MS and live in Northern Ireland you are twice as likely to be taking a DMT than if you live in Wales.

• Half of those who are struggling financially and are in need of social care support are unable to access it. By contrast, nine out of 10 of people who are financially comfortable and need social care are able to access it • Access to MS nurses, neurologists, powered wheelchairs and support to make home adaptations is often based on where you live, not your clinical needs The findings are based on a survey we issued last year asking people with MS what services they needed and to what extent those needs had been met over the previous 12 months. More than 10,500 adults responded – the largest ever survey of people with MS in the UK. Stop the MS Lottery To coincide with the report, we’re launching the Stop the MS lottery campaign, calling for everyone with MS to have fair access to the treatments and services they need, when they need them, wherever they live in the UK. We want every person with MS to have a personalised treatment, care and support plan, with two comprehensive reviews each year.

Nick Rijke, Director for Policy & Research at the MS Society, said: “Our survey findings worryingly suggest that the likelihood of someone receiving a life changing treatment or service is often based on luck – like where they live or how helpful their healthcare professional is – rather than their genuine clinical need.”

“When it comes to MS drug prescription rates, the UK ranks 25th out of 27 European countries. Given the relative wealth of the UK this is simply unacceptable."

If you would like to view the report and read about the campaign please follow this link to the MS Society website: http:// mslottery.mssociety.org.uk.

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If you have experienced any difficulties in accessing services that you need in Cornwall, including to disease modifying therapies/drugs, MS Society service development officer for the South West, Andrew Kemp, would be pleased to hear from you. Where appropriate he will be discussing local issues with health and social care professionals and other service commissioners and providers. His contact details appear below.

Andrew Kemp Tel 020 8438 0767 email: akemp@mssociety.org.uk MS Society volunteer survey A big thank you to all of you who completed the recent volunteer survey. We had a fantastic response with more than 1,400 volunteers returning the survey.

We heard from volunteers in every part of the UK, the Channel Islands and the Isle of Man. It’s encouraging to hear the views of so many of our volunteers.

The results are now being analysed and we’ll let you know the full details and our action plan in June.

MS Society announces new research projects We’ve just announced funding for 11 new research projects, taking our total spend on new research in 2012 up to £2 million.

Progressive MS continues to be priority, with research trying to understand more about the onset ofsecondary progressive MS, the role of brain inflammation in progression and exploring exercises that help with bladder problems. Two interesting biomedical projects will investigate the role of the Epstein-Barrvirusin the development of MS and why remyelination fails in MS. A novel project will also look at using FES with robotics to help arm movement and we have also funded the next stage of a successful project that identified that using textured soles could improve balance and walking.

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Sent in by Mary Smith Life isn’t Fair!

by Jonathan Smith, son of Mary On the day I “lose my legs”, what matters most to me is looking back and knowing that I made the most of everything that life had to offer. I was eight when my Mum “lost her legs” and was confined permanently to a wheelchair through Multiple Sclerosis.

As a child, whenever I would complain to my parents that something “wasn’t fair” Mum would respond “life isn’t fair”. I still haven’t found a comeback which counters this response effectively. Ironically, Mum found herself suffering from an incurable disease with no understanding of how she got it and only one certainty – a relentless loss of physical control until her body was paralyzed. She was a brilliant and energetic mum to her four boys, so at eight years old, whilst witnessing her horrendous physical demise, the reality struck me with distressing clarity that truly, life isn’t fair!

Upon this realisation, I decided to adopt a personal mantra: “tomorrow I might lose my legs”. Recalling this phrase has helped me to gain perspective and strength in tough times, enabling me to compare whatever ‘unfairness’ was currently afflicting me to the prospect of losing my legs. It has also inspired me to be adventurous, courageous and unafraid of the “less travelled” path and reminds me every day of the importance of committing to achieving my dreams no matter how unlikely, and most importantly, to live each day as if it were my last. My first living memory was of my Godmother Debbie sticking a huge poster of Cologne, the world’s tallest Cathedral on my bedroom wall. I was fascinated by the beauty of the building and the way its size made the cars and vans in the photo look like little toys. I grew to love the slightly smaller 5 Truro Cathedral and used to insist that

Mum and Dad take me in there on shopping trips to just wander around and listen to the beautiful music from the choristers. I used to dream that one day I would join the choir and sing with the choristers, or maybe visit Cologne to see its magnificence for real.

We couldn’t afford singing lessons, but aged eight I convinced Mum and Dad to let me trial to be a chorister at Wells Cathedral.

Following the trial, the choirmaster concluded that I wasn’t good enough to be a chorister. This didn’t deter me. Despite my lack of training, I wanted the opportunity to learn, so I insisted that Mum and Dad allow me to trial at Truro Cathedral. I was accepted with a scholarship. Later, the choirmaster explained that although I lacked technical ability, my enthusiasm and the twinkle in my eye convinced him of my potential.

Three years later the Wells choirmaster, who originally rejected me, transferred to Truro Cathedral and despite his original assessment, he appointed me Head Chorister. After training for three hours a day for five years I had blossomed as a singer, now performing in commercial recordings, singing numerous solos (including to the Queen) and leading the choir on tours through France and Germany. Aged 13, in my final concert, I sang a solo in Cologne Cathedral and fulfilled my unlikely dream.

Without the lessons and perspectives of Mum’s situation would I have had the guts to wish for such an unlikely dream? Would I have given up when so completely rejected

by Wells? Would I have worked so hard to develop my ability to sing, simply because I loved it? Would I have developed the leadership traits which led to my election as head chorister without having to grow up so fast due to having an ill Mum? I don’t know. What I do know, is that these types of stories echo consistently throughout my life, and in the critical moments when I

need to take key decisions or decide whether I will commit to something, inevitably my mind returns to Mum, and I think of what decision I would make if I knew I were losing my legs tomorrow.

At Oxford I became passionate about rowing. As the “un-sporty” brother this was a surprise to my family and friends and initially rowing didn’t come naturally to me.

However, following three years of committed training, my rowing performance and leadership traits led to my election as Trinity College Boat Club Captain.

One week prior to the annual Oxford “bumps” races two 1st VIII rowers had a bicycle crash. Our number five dislocated his elbow and our stroke fractured his wrist.

It was devastating news and a typical example of a “life isn’t fair moment”. I had ignored the 15 missed calls on my phone because I was hungry after the morning training and eager to get to lunch. I remember with perfect clarity walking into the dining hall at Trinity College after morning lectures and hearing the hall go silent. Everybody looked at me and slowly people started to approach me to give me their commiserations assuming our race chances were finished. Once I got to the bottom of what had happened, I remember laughing to myself at the level of unfairness in this situation – it was unreal, especially after 9 months of committed training!

However, I also knew this was not a moment for giving up; it was my job as captain of the team to rally the troops and use the situation to our advantage, to galvanise them (as mum has so successfully done for our family down the years). I remained calm, immediately calling a team meeting to promote a committed squad rower to replace our number five and reassuring the team that the situation was under control. I then worked with a medic to construct a wrist cast for the stroke with the fracture which was shaped so it could slip over his oar and allow him to continue

Maintaining our technique was critical and I hoped he could continue to set our rhythm even if he couldn’t apply pressure in the water. We had trained harder than any other boat on the river over the last nine months, so I knew we had the capacity to cover the power shortfall from the stroke not rowing. It was unorthodox but it worked. We made boat club history by winning “blades”, whilst bringing Trinity 1st VIII back to division one for the first time in 30 years.

22 years on since Mum became wheelchair bound, she remains a complete inspiration to me. Despite her paralysis, she still maintains her positivity, sense of humour and lust for life. We talk as often as I can through my busy life and she seems to love hearing my news. I am sure she takes immense pleasure in knowing that her greatest unfairness is my biggest source of strength, inspiration and success.

Jaspers jokes: Do you have any jokes?

Send them to me, (Jasper) for the magazine

A guy goes to a psychiatrist. "Doc, I keep having these alternating recurring dreams.

First I'm a teepee; then I'm a wigwam; then I'm a teepee; then I'm a wigwam. It's driving me crazy. What's wrong with me?"

The doctor replies: "It's very simple. You're two tents."

Three retirees, each with a hearing loss, were taking a walk one fine March day.

One remarked to the other, "Windy, ain't it?"

"No," the second man replied, "It's Thursday."

And the third man chimed in, "So am I. Let's have a coke."

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This little poem was sent in by Marjorie Sargent who lives in Grantham, Lincolnshire and is a member of our South Cornwall Branch.

Thank you Marjorie

Along with my own photos of my embroidered pictures to Squid for her birthday in 2000, when I was sick in bed after an operation. I wanted to give her something different and loved Winnie the Pooh, so whilst ill in bed, I embroidered them for her, then framed them for her.

When the world is all at odds And the mind is all at sea Then cease the useless tedium And brew a cup of tea There’s magic in its fragrance There solace in its taste, And the laden moments vanish Somehow into space.

The world becomes a loving thing There’s beauty as you’ll see, All because you briefly stopped To brew a cup of tea.

Its not something I can do now due to numb digits but, its so wonderful to look back on good achievements done from love and that I’d actually taken a photo back then as they took me 6 weeks to achieve, now hopefully into the photo I received this letter and poem from our competition, along with Squid’s 13th friend Susan Creese with our first entry for Birthday photo I took. the photo competition.

Squid is back to school after Easter and From Susan Creese: overloaded with tests for her next year I’ve been unwell, stuck in bed so pleased to class directions but she hopes to put received your magazine again. I liked forward some things soon via email.

Wendy Hughes piece which prompted my Hope to see you all at Carnon Downs on poetry.

29th June Looking back on good memories, photo of Susan Creese. myself and two grandsons, if I was to put a picture with the poem that would be it, Thank you Susan for your correspondence, Wonderdust = Rust on ship a great input to our magazine and I am sure background. I would also people can relate to your experiences. like it put forward in your Sydne`e - If you are reading this, good luck best photo competition with your education and I look forward to ( As Sydne`e/Squid as we hearing from you. call her took it!)

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Sydne`e’s 13th birthday cake

Malcolm

Wonderdust by Susan Creese

Just a thank you I would just like to thank all those who send in letters, information, articles and poems.

Madness is said to be all in the mind Or is it ‌.

Madness is said to be a state of mind Or is it?

Is it the chemicals that make us so blind A toxic reachon : a fall out metaphor Nuclear reactor abundant world wars Do we need any of these, I doubt it?

A pivotal axis moves us while the sun shines Rock on supersonic products, drown us Chemical depleted toxins raising atmospheric pressures Engulf us in a sea of debt The African aboriginal man called Adam Ancestral generic Grandfather time Begetter to mothers and fathers Who leave their children behind Inherent successive mutations Oppressing the people: exploiting mankind Bold moves to live on Mars Overthrust on the third climb

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Seascape from mans creation Reactive the product waste Pollination in the next generation Madness– the fertilisation from red copper dust

The Lifeboat is very much your magazine and the articles that you send in are an important part of it.

I realise that many of our members cannot get out and about but the magazine is a form of communication, just a phone call or email will get your views and articles published.

The branch is here to help its members in any way possible, your communication gives us an insight to your requirements so keep the communication coming.

To all those young people out there: Your input is important to us, we need to know what you require to enhance your branch membership.

Please respond to the article on page 11 and lets cater for the young people in their own environment.

Malcolm Glister Jaspers joke, Laughing is compulsory

A teacher was giving a lesson on the circulation of the blood. Trying to make the matter clearer, he said: "Now, students, if I stood on my head the blood, as you know, would run into it, and I should turn red in the face."

"Yes, sir," the boys said.

"Then why is it that while I am standing upright in the ordinary position the blood doesn't run into my feet?"

A little fellow shouted, "'It's because yer feet ain't empty."

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May Quiz answers 1 2 3 4 5

Benign Flood Carat Born May

6 Hems 7 Haze 8 Pants 9 Dahl 10 Tam

Bingo numbers called in: January 10, 26, 43, & 61 February 52, 90, 76, & 85 March 5, 30, 46 & 67 April 13, 49, 23, & 73 May 79, 45, 16, & 28 June 65, 18, 41, & 87 July 57, 3, 8, & 69 August 83, 59, 71, & 20 September 38, 63, 75, &1 October 33, 77, 55, & 89 November 51, 86, 48, & 35 December 11, 32, 53, & 68 January 13 81, 31, 15, & 25 February 13 40, 22, 78, & 36 March 13 44, 56, 21, & 6 April 13 80, 39, 50, & 74 May 13 42, 84, 24, & 37 June 13 2, 60, 34, & 70 July August September

Target £2,000.00 Actual to date £914 Money Boxes 9 9

June quiz The number in the bracket indicates the number of letters in the answer.

1 Exclude (3) 2 Large deer (3) 3 Arrange (5) 4 Yeoman of the guard (9) 5 Land force (4) 6 Mother of the ancient Irish gods (3) 7 A person in general (3) 8 Female sheep (3) 9 Short (5) 10 Bus garage (5)

What’s this mystery object?

Happy birthday to: 1st Lin George 1st Helen Mennear 4th Sue Gascoigne 5th Lauren Nankervis 6th Beverley Peek 10th Angela Dutton 14th William Pashley 20th Hilary Hendra 21st Katie Horrocks 22nd Wendy Hughes 28th Desmond Coad

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May mystery object

Poetry Corner

Thought of the Month Assertiveness is not about being rude or demanding, its about standing up for what is right for you!

Try saying no when you don’t want to and yes when you do.

You were like a mountain, always there, never to leave, and I, I was like water forever on my way.

Puzzle, puzzle me from the inside out maybe then you will see what I am all about Birthday cards If anyone would like a birthday card send from the branch please contact Betty Alderton—Contact number on back page

Can you spot the 10 differences

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Young people and newly diagnosed group Young people with MS between the ages of 17 to 30 years and those newly diagnosed need a different type of support and activity to the normal committee environment.

For many valid reasons this age group would rather deal with their issues separately and with people who think alike and have the same interests, away from the more advanced and more mature membership.

South Cornwall would like to give that opportunity to young people by inviting them to form a sub group of the South Cornwall Branch.

How would it work?

The sub group would run independently from the main branch giving the autonomy for the group to arrange and involve themselves in their own desirable activities.

The group would have their own committee who could have a representative on the main South Cornwall Committee for updating and communication.

Finances: The main branch could finance the young peoples group although they would be expected to hold their own fund raising activities.

We must recognise the requirements and feelings of the young and newly diagnosed and give them the opportunity to find their way in their own and comfortable environment

So lets do it!

How do we start? Its easy, call or email me Malcolm Glister : Tel: 01209 860754 Email: malcolmglister@btinternet.com And we will: ⇒ Sit around the table and discuss your requirements and how you would like to proceeded. ⇒ Discuss the financing of the sub group. ⇒ Start a young persons article in the magazine. ⇒ Discuss how we can help each individual in their own time and in their own way.

This is an opportunity not to be missed for all those young people including carers.

To all members: Please inform any young person with MS or who is a carer or has been newly diagnosed that this option is available to them.

Thank you Malcolm Glister

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From Mary Smiths son Henry "The London Marathon was a great experience. Early on in my training regime it became clear that completion was the target with everything else going on! Times and things went out of the window and although I did the first half in two hours, the second half took just over three, with regular walking intervals. It was physically extremely hard - my legs just weren't prepared for much over 17/18 miles when the going got tough. There were times when even walking was tough and it was a real mental battle. We have raised a good amount (more than 3K) which is great and we'll split it evenly between the MS Society and Preston Neonatal Unit. It was very hot on the day, which didn't help, but meant there were spectacular crowds all the way. I was running with people obviously running for very powerful, moving causes and personal reasons, which was pretty inspiring. There is something very special about the whole thing."

I hopped the 2013 marathon, the only problem I found was the lack of tea on the way round.

I compensated by calling in on all the tea houses I could find.

Anthony Rogers Anthony Rogers, Carwinion.

We are saddened to learn of the death of Anthony Rogers after a long illness, we send our sincere condolences to his family.

As some of you are aware, Jane & her team have raised several thousand pounds over the years for our branch, but Jane will be leaving Carwinion later in the year so this year’s “ Bring a Plant, Buy a Plant “ event will be the last. Therefore let us all do our best to make this the most successful ever and turn up in overwhelming numbers.

The date has not yet been fixed but is expected to be in early September, we will of course give you as much notice as we can.

Malcolm Thorne South Cornwall Branch and the CAB For the past two years South Cornwall Branch have been financing a dedicated officer from the Citizens Advice Bureau.

If you are concerned about your finances and or benefits or need any advice please use our link to the CAB. We have a dedicated CAB officer who will help you through your concerns and may well inform you of finances you should be claiming.

With the changes in legislation and benefits these are worrying times and sometimes our entitlements are not entirely understood, this is a golden opportunity to clear any misconception about what you are entitled to and give peace of mind.

All you have to do is call our support number 01872 274911 and arrange a Of course I reported meeting with our CAB representative who this error of judgment will guide you through your particular situation. to the relevant authorities. you may get Mike Georges Ryan Air answer phone message but don’t worry, Jasper you are in the right place, just leave your message and we will get back to you.

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After the article on Malcolm and Jackie’s Northern Lights trip, you have asked for more information and here it is.

Diary of our holiday Northern Lights Cruise 14th Feb 2013 12th. To London. Comfort Inn. Left Camborne 13.00 arrived 21.45. Found hotel but on 4th floor & lift only went to 3rd.

13th. Museums.

Cold but sunny. Walked round corner to taxi rank & took cab to V & A museum.

Wonderful place, saw Chinese room, silver, gold, statues, miniatures, snuff boxes & paintings. Had coffee then went on to Nat. History. Crowded with school children. Had lunch, saw some of the quieter bits then abandoned it & went to Science. Most interesting. Later arrived cab back at hotel.

14th To Tilbury for embarkation.

Sunny, Walked across road to Victoria departures, bus to Tilbury on time, then embarkation. Shown to cabin, luggage waiting for us. Surprised how much room we had. Compulsory fire drill.

Dinner at 18.00, met Maggie & Ron, & Chris & Steve.

7 Courses every night if we wanted it (which we didn’t). Brilliant with gluten free food.

15th. Amsterdam.

Sunny, Arrived 09.30, went ashore 09.45 for the tour of Amsterdam & canal cruise.

Took us to the floating flower market, nipped into café, coffee & apple pie. Saw some of the market before time ran out, Back to bus & return to ship 13.45 for lunch. 5 courses each day if wanted (we didn’t).

Sailed 14.00 .

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16th. At sea.

Sunny, sea calm throughout voyage.

Interesting talk by Prof. David Southwood former boss of the European Space Agency, talked about The Sun, the Earth & the Northern Lights. Captain’s reception, dressed up. After dinner went to the Rock & Roll show, very good.

17th. Alesund.

Cold drizzle, nothing booked so went ashore for a short walk. Sunday, shops shut except for souvenir shop beside the quay.

18th. Svartisen Glacier. Northern Lights.

Cold, sunny. Ship went up fjord to glacier, spectacular.

Crossed the Arctic Circle on way north.

Another good talk by David Southwood, Aurora & Magnetism. After dinner saw An Audience with Valerie Leon, Bond Girl & Carry On girl. Just getting ready for bed when the call came that the Northern Lights were on. Threw on the thermals etc & went out on deck. Watched for about an hour & a half, wonderful, beautiful, awe inspiring, etc. etc. Pictures & films do not prepare you for the real thing.

19th. Narvik. Northern Lights.

Cold & sunny again. Left at 11.15 for a trip on the Ofoten Railway which winds its way along the fjords & up the mountains to just across the Swedish border. Hotel among 3-4 feet of snow, opened specially for our lunch. Train was late coming back so we got more time in the snow. Another look at the Northern Lights tonight but not as spectacular as last night.

20th. Alta Cold & sunny yet again. Took the 14.00 trip to the Igloo Hotel, had our (free) drink in an ice glass, vodka & curacao, very nice. Seems

unbelievable that the hotel is built from scratch each year. Heard a talk on how the experts decide on where to go for the best chance of seeing the N. Lights based on weather forecasts & expectations of cloud cover. Went on the 21.00 outing to find the Northern Lights. Saw 2 moose beside the road on the way. Jackie saw the lights from the coach but that was it. Those that went at 20.00 saw them briefly but they did not reappear. Still a lovely evening walking in the snow. Free cups of hot chocolate provided.

21st. Alta Cold & sunny, Took the shuttle bus to the town centre, big shopping centre, found a chemist for cough syrup & throat sweets, very expensive, nearly £20. Later saw We Will Rock You, a show of Queen music.

22nd. Tromso Snowing !!! Took the city tour, including the cathedral & the Tromso museum which has displays of Arctic wildlife & traditional ways of life. Time for a walk in the snow in the afternoon .Found a Post Office & posted our cards. During dinner we heard crunching noises, & looked out of the window to see that we were sailing through an ice field. Classical concert in the evening. Excellent.

23rd. Sortland.

Raining, cold & icy underfoot. Nothing booked so stayed on board. Told later that it was a dismal place & we hadn’t missed anything. It was the first time the Marco Polo had called there & probably the last.

24th. At sea .

David Southwood talked on Cassini/ Huygens: an Odyssey to Saturn & Titan for which he designed an essential part of the probe.

Evening show was An Audience with Caroline Munro, another Bond girl & the face of the Lambs Navy Rum adverts .

25th. Andalsnes.

Still cold & sunny. Outing today to see local handicraft centres, nice but very, very expensive knitwear & felt goods. More affordable were the bits for sale at the centre where a chap paints traditional designs on wooden things. Bought a nice glass dish here .

On our way from the first to the second we discovered that neither the driver nor the guide had actually been there before, & we took quite a long detour up a single track road into the mountains before he found a place to turn round & look for the turning he had missed earlier. Stopped off at the Troll Wall on the way back.

Evening entertainment was comedian/ magician Andy Leach .

26th. Bergen.

Warmer, snow only on high ground. Took the city sightseeing tour & visit to Troldhaugen, home of Edward Greig, lovely place beside ( frozen ) lake. Walked part of the way back to the coach with Valerie Leon, no airs & graces about her.

27th. At sea.

Afternoon talk on the history of the Marco Polo, launched in 1965 as the Alexander Pushkin for the Russian cruise fleet.

In the early nineties a wealthy Greek bought the ship & spent £60m having the insides ripped out & rebuilt. Now on long term lease to Cruise & Maritime Voyages.

28th. Tilbury.

Back in UK. Still sunny. Disembarkation worked without problems & we were back at Victoria in good time for the coach to Camborne, arrived home about 21.30.

Northern Lights Cruise Jackie & I were asked to put this article in the newsletter, giving more details of our cruise in February. To keep it relatively short we have submitted it in diary form, but we are more than willing to talk in greater detail, so if anyone wants to know more please give us a call. 01209 717237.

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page Megan’s

Coma Story! Part 1 I jumped into a taxi and told the driver where I wanted to go and then we were off, speeding down the road. After about 10 minutes we reached the hospital. I hopped out of the taxi and threw the taxi driver a few notes. I rushed up to the front desk and asked the receptionist which room Taylor Stewart was in.

She led me down a long, winding corridor and we eventually got to room 117.

She opened the door and there lying on the bed was my sister.

She has been in a serious car accident and is critically injured. Her face was covered in cuts, bruises and scrapes.

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Her head was wrapped up in a bandage. It was the same with her arm and her left leg. The nurse explained that she’d broken 2 ribs as well as her arm, leg and three fingers, and that currently she’s in a coma that she might not wake up from, even if she does there’s a high chance that she’ll have brain damage.

I collapsed in a chair next to her hospital bed while the nurse left the room. She was going to be okay, she has to be okay. If she dies that’ll mean that I have no one left. My dad died before I was born and my mum left us when I was 3.

Ever since that day we’ve been in care. If my mum hadn’t have left, this never would have happened. My sisters 16 years old, she’s nice and all, it’s just the people she hangs around with that makes her come across as bad.

Since the day my mum left she’s looked after me. She’s given up numerous offers to live with foster families so she can stay with me. When her friends were all going to a party and I was ill she’d make up an excuse to stay home and look after me. That doesn’t really happen anymore as seeing as I’m now 10 and don’t really need looking after anymore. The night of the accident (tonight) we’d had a massive argument about which side of the room was mine and which was hers it ended in her storming off to her friend’s house where she then

got into the car that may well kill her.

They drove off, speeding really. Down the busy highway, a truck pulled out in front of them. They drove into the side of it.

None of them have died Yet. I sit by her bed all night holding her hand and telling her all of the good times we’ve had together, asking her to tell me if I get anything wrong but she doesn’t. The Nurse said that she might be able to hear me, but might not be able to respond back. I carry on talking until my throat gets to sore.

I wake up in the morning at around 10.00.

A bunch of flowers have been left on the side cabinet on the opposite side of the bed. I slouch back into the chair and fall back to sleep. I stay with her for the whole week until my social worker forces me to go home and get a proper night’s sleep.

I asked the nurse to call me if there’s any change. When I get back home I go straight to our room to escape all of the questioning eyes and worried faces.

How young people grow up, Malcolm has asked me to write this article because my ears are bigger than his

Jasper Way back in 2010/11 I heard that Megan liked to write stories so I told Malcolm and he asked her if she would write one each month for the magazine and Megan agreed.

Do you remember Megan back then, if you don’t here’s her magazine picture from that time Since then Megan has written stories for our magazine and become the youth leader of the South Cornwall Branch MS Youth Group West, earning herself an MS Shinning Star award.

Growing up fast and making me feel old Megan’s pictures are changing as time goes by but we still get her support.

We thank Megan for her commitment and her parents Paula and Ian for supporting her work with the MS Society.

If she ever stops boxing my ears, I hope Megan will agree to be on the front cover of our July magazine

Look out for part 2 in next months magazine!

South Cornwall branch MS Youth Group West “Making Sense” This is the story of Megan’s page, a story that is long overdue and one that will get my ears boxed when Megan reads it.

34 16

Read-A-Thon news

Schools completed: Cape Cornwall, St Just Darite CP School, Liskeard Lanivery School, Bodmin Kehelland school, Camborne Gulval school, Penzance St Mary’s C of E Primary Devoran School,

This completes the first round of schools, I will print the funds raised next month Daniel and Martha

Daniel and Martha are friends who are in the same class at Lanivet primary school.

Even though their school didn’t choose to do the read-a-thon they asked if they could do it themselves. They both surprised their parents with their commitment over half 17 term.

Daniel chose to be challenged on the amount of pages he could read in a week.

When he told his parents that he would try to read 300 pages they were worried because normally he barely read three or four pages a day when asked to for school.

However, he surprised everyone by reading over a thousand pages and being very self-motivated. Martha likes stories and reading but also impressed her parents with her self-motivated commitment. Between them they raised £80.00 for South Cornwall MS Society. They have both written a little about themselves in their own words. I would only add that at the end of March they both starred in the school pantomime in a variety of chorus roles. Daniel played the part of a mouse and rat whilst Martha was a dancer and fairy. It was a show enjoyed by the whole community.

Daniel aged 9 My name is Daniel and I like to play football.

Sometimes I play in football tournaments.

Also I’m a lifeguard in training and when I’ve finished my training I will have a chance to be a lifeguard.

Secondly, I love to play guitar. Also like the opportunity to help people with MS because my Mum has it. I like to go camping with my friend Luke.

Martha aged 9 My name is Martha. My age is 9. Reading has always been one of my favourite subjects.

I love to go swimming and to do swimming galas. I also love to draw pictures (all sorts of different things such as animals, portraits and landscapes).

When I’m older I would like to be a zoo keeper, or a vet at the zoo.

Well done Daniel and Martha, we thank you for taking part in the ReadRead-A-Thon and on your own back too, raising £80.00 What an achievement!

Malcolm How about sending me some of those pictures Martha

2 Dunlop 32” trolley suitcases. 110 Litres Capacity, expandable.

Black, used once.

RRP £59.99 bargain at £30.00 the pair.

Contact Malcolm Thorne 01209 717237 Don’t miss this bargain!!

South Cornwall Branch events 2013 Get Together The next get together is on the 29 June at the Carnon Inn, Carnon Downs.

Don’t miss this one with makeovers, photos and great prizes.

Book now with Chris 01209 315386 Carers Lunch The carers lunch is on the 20th June at the Falmouth Hotel so don’t miss it! 12.30 for 1.00pm To book call Mike Tel 01872 862031 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 More events to come throughout the year! we are still waiting for more responses from our events list so give us a call.

Events taking place at Merlin MS Centre Ellie May, Communications and Corporate Events Manager Tel: 01726 885530

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.

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.

70 In next months Lifeboat magazine: Members pages & Magazine Bingo Youth Group page

IMPORTANT NOTICE South Cornwall Vouchers Jackie Thorne will be away for a few weeks so as from 1st March 2013 please make all voucher requests to Chris Sargent 01209 315386

MS News Megan’s page Branch events Read-A-Thon news

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South Cornwall Branch Information

Branch contact details: Llawnroc, Mount Carbis Road, Redruth, Cornwall, TR15 2LD Tel: 01872 274911 www.mssociety.org.uk/southcornwall Satellite events 1st & 3rd Tuesday of each month: Trelowarren Arms, Budock Water, Falmouth, between 11.00am and 2.00pm approx. Coffee and/or lunch.

Open to all.

Last Tuesday 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: Malcolm Thorne Telephone: 01209 717237 email: malcolmt.southcornwallmssociety@live.co.uk Address Coomar, 3 Chenoweth Close, Camborne Cornwall TR14 7JR Voucher Admin Officer: Jackie Thorne Telephone: 01209 717237 email: malcolmt.southcornwallmssociety@live.co.uk Secretary: Christine Sargent Telephone: 01209 315386 email: christine.southcornwallmssociety@live.co.uk M S Support : Telephone: 01872 274911 Carer’s Officer: Neville Reed Telephone: 01637 875823 email: nevnjude.southcornwallmssociety@live.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 Events CoCo-ordinator Carol Batchelor Telephone: 01326 373464 email: carol.southcornwallmssociety@live.co.uk Fund Raising Manager Vacant 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