July 2013
The Lifeboat
South Cornwall Branch Monthly Magazine
Megan Robins
Cover page: I did get to take some pictures of Megan and I took so many I was spoilt for choice, these are just a few of them and as usual I like to have options for the front cover, as you can see Megan is very photogenic and makes a great subject. Thanks Megan Who is going to be next for the front cover, don’t be shy, send me an email and we will get YOU!! on the front cover.
at o b e if L e th e id s In this month
MS News Page 3
Page 4
MS Society appoints new Chief Executive Researchers develop effective fatigue management programme MS Society predicts devastating impact as new claimants access PIP
Page 5/6 Potential MS treatment shows promise in early research Carers Week research reveals carers’ experiences in UK Page 7
The real laws of nature June Recipe
Page 8
Who is this?
Page 9/10 Quiz page 1
Page 11/12 The County Executive Committee meeting Page 13/14 The Bleeper Here to help From Chris Sargent Page 15
Megan’s page
Page 16
Youth group
Page 17
Read-A-Thon Schools awareness DVD
Page 18
Events
Page 19
Information page
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Chairman’s Report I am pleased to announce that Karen Stribley has joined our team as the new Carer's Support Officer and takes over from Neville Reed who has been in the office for several years. I would like to thank Neville for filling in when I became Chairman. Both Neville and Judy will stay on the committee as support team members. The support team are soon to announce a list of events which will be both enjoyable and also financially beneficial to our Branch , so watch this space. Both Malcolm and Mike May are working
on schools awareness DVD using the branch video camera. Is there anybody who would like to form a photographic club using the camera and also their own? You would be welcome to use our bungalow to run it . Finally, can I ask you to turn out your cupboards, garage and shed to find articles for our car booter's Amanda and Richard as they are selling goods at a fantastic rate and as such making money for our branch. Did I say finally? Well a final request for all of you to become more pro active in the Branch. Don't just sit there waiting for the committee to suggest events etc. Help us by you doing it .
Mike Editors Note Hello everyone, Whatever happened to flaming June, or is that something I vaguely remember as a child. Never mind it can only get better. There is still so much going on in the South Cornwall branch, the Schools DVD, Awareness DVD, County Executive Committee, the Read-A-Thon, A new web site soon to be on line with your magazine included. We wish all the best to Allan Sargent and look forward to seeing him back, we do miss him.
We are working on the issue of rural location and the ability of our members to attend events, reaching every member is a difficult task but we must continue to address this issue. You can help by sending in your suggestions and ideas, they are all important to us as is, getting it right for our members. Is there anything you would like to see in your magazine? Jasper continues to be a pain and Megan’s stories just get better and better, I would thank all those who have sent in articles and letters, its what your magazine is about.
By the time you receive this issue we would I will be reporting on the County Executive have had our get together and I would have committee meetings where there are had a makeover and a picture taken, I will exciting things on the agenda and hopefully report in next months Magazine. branches will be working closer together for the good of their members. MS branch Malcolm awareness being a priority and working A pain am I? it will take more with the Merlin Centre to achieve common than a makeover to sort him aims, all these things can only enhance our out, he would be good in a status and public perception. pantomime (ugly sister) 2
News from the MS National Centre MS Society appoints new Chief Executive The MS Society is delighted to announce the appointment of Michelle Mitchell as its new Chief Executive from September. Michelle is a highly experienced leader and is currently Charity Director General at Age UK. Michelle will be taking over from Acting Chief Executive Patricia Gordon; her appointment follows the departure of former MS Society CEO Simon Gillespie. She has led pioneering, high profile campaigns and driven policy change in a number of critical areas, including social care funding, which have resulted in fundamental improvements for those in later life. She also led on core elements of the merger between Age Concern and Help the Aged and the brand launch to create Age UK. Michelle previously worked for NSPCC and in Parliament, and is currently a Trustee of Platform 51 and the British Gas Energy Trust. She said: "I am delighted to be joining an excellent team at the MS Society. I believe the charity’s inspirational work, from world-class research to practical information and support, is fundamental to improving the lives of people with multiple sclerosis.
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"I am looking forward to working with staff and volunteers to build on the excellent achievements of the last 60 years." Hilary Sears, Chairman of the MS Society, said, "Michelle has a successful track record as a leader and brings with her extensive experience in public affairs, strategy development and research and was part of the team that led the merger of Age Concern and Help the Aged and launched Age UK. "The Trustees and I are looking forward to working with her as the MS Society enters an exciting and dynamic phase of its development, creating a clear vision for the next 20 years to ensure we meet our bold ambition to stop MS in our lifetimes." Researchers develop effective fatigue management programme Researchers funded by the MS Society and based at Bournemouth University and Poole Hospital NHS Foundation Trust have developed a highly effective method to help people with MS manage their fatigue. The fatigue management programme, named ‘FACETS’, incorporates ‘energy effectiveness techniques’ like lifestyle decisions and ways of working that maximise the energy people have alongside cognitive behavioural strategies, helping participants to learn helpful ways of thinking about fatigue. Research results A team of researchers led by Professor Peter Thomas at Bournemouth University Clinical Research Unit have recently completed a randomised controlled trial of the FACETS intervention. They reported that 40% of participants who received FACETS in addition to their routine care had a meaningful improvement in fatigue levels compared with 19% of those who received current local
practice only. Participants who attended the FACETS programme also showed a statistically significant improvement in reported self-efficacy, indicating that they were more certain of their abilities and that their newly learned techniques could help to control their fatigue. Accessing FACETS This group based programme is already being delivered by healthcare professionals across the UK and could help thousands of people with MS manage one of the most debilitating symptoms of the condition. There is considerable interest in the programme and researchers in France are currently translating it and considering how it can be delivered to people with MS in their country. We encourage healthcare professionals to look into how they can deliver it to people with MS in their area, email education@mssociety.org.uk for more information about training opportunities to deliver this programme. People with MS who are interested in receiving FACETS should speak to their local healthcare professionals (physios, OTs, MS nurses) and find out if it is available in their area. If it isn’t, people can ask their health care professional to contact the MS Society for information about training opportunities. The trial Researchers studied 164 people with MS and saw groups of participants (between six to 12 at a time) attend six weekly, 90 minute group sessions at trial sites in either Poole, Bristol or Southampton. Each session was led by two senior healthcare professionals (an MS nurse,occupational therapist or physiotherapist) and attended by others with MS. A month after the six week intervention, the researchers surveyed participants for self reported fatigue severity, self efficacy and quality of life improvements.
A further survey was carried out four months after the end of the course. Dr Sarah Thomas, Senior Research Fellow at Bournemouth University Clinical Research Unit led the development of the FACETS programme and said: “We have shown that FACETS is an effective treatment for managing fatigue in people with MS, addressing one of their worst symptoms”. She continued “It has been designed so that it can be provided in the health service with relatively little cost. This is a good example of researchers and charities working together to provide improvements in patient care.” The full results of the trial were published this week in the Journal of Neurology, Neurosurgery and Psychiatry. MS Society predicts devastating impact as new claimants access PIP The MS Society, along with over 50 other charities forming the Disability Benefits Consortium (DBC), today warned the government of a devastating impact on people with MS and other disabilities if it ignores concerns about the roll out of the new Personal Independence Payment (PIP). As the programme is extended to new claimants today (10 June), the MS Society is concerned that the government’s intention to save money will leave many people living with MS and other disabilities without vital support. PIP was launched in the North-West and parts of the North-East of England in April and will be extended to include all current DLA claimants from 2015. Wrongly withheld Following the reform, 600,000 fewer people will qualify for financial support to help with the costs of living with a disability as PIP
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replaces Disability Living Allowance (DLA). Mobility support could be wrongly withheld from those who need it as the criteria is extremely strict and stipulates that if people can walk just 20m – even using aids such as sticks – they won’t qualify for the enhanced rate of the benefit, and could lose up to £1,800 a year or their Motability vehicle. The DBC, which includes Parkinson’s UK, Mind and RNIB, along with the MS Society, also has major concerns about the application process and how people are assessed. For example, a claimant could be ‘clinically’ examined by a healthcare professional who isn’t a doctor and does not have a detailed understanding of their condition. Fair assessment The DBC is calling on the government to look into these issues to ensure that all claimants are assessed fairly so their needs are properly met and their independence safeguarded. Claire Nurden, Senior Policy & Campaigns Officer at the MS Society and Co-Chair of the DBC said: “We are seriously concerned that the change to PIP will have a devastating impact on people living with MS and other disabilities who really need support. "Despite the government’s claims that the benefit is to help those in the greatest need, we believe that it’s many of these people that will lose out. Urgent revision "We are calling on the government to urgently revise the mobility criteria for the benefit, which currently deprives anyone who can walk even slightly further than 20 metres – the length of just over one double decker bus – of the support they need to remain independent. "We want assurances that the assessment process will be as fair as it can be that means proper use of additional evidence and the abolition of clinical exams that are currently set to be 5 carried out by assessors who aren’t
properly qualified to do them.” The MS Society is working hard to make PIP as fair as it can be for people with MS. For updates on what we’re doing and how you can get involved, please join our campaigns community. For more information about PIP visit our web page If you or anyone you know has begun a new claim for PIP, we want to hear from you. Email campaigns@mssociety.org.uk Potential MS treatment shows promise in early research Researchers in Switzerland, Germany and the US have worked together to develop a new type of treatment for people with MS. This potential treatment aims to re-programme the immune system to try and reduce attacks on myelin. The treatment involves taking white blood cells (immune cells) from an individual with MS and putting large quantities of myelin antigens (parts of the immune system that recognise myelin) into them. These immune cells containing myelin antigens are then injected back into the participant. This causes the immune system to recognise myelin specifically as harmless and develop a tolerance to it, so as not attack it in future. The therapy seems to have the advantage of doing this without altering or suppressing the function of the rest of the immune system (which some current MS treatments do). A small trial The new treatment was tested in a phase 1 (early stage) clinical trial which involved just nine people, 7 with relapsing-remitting MS and 2 with secondary progressive MS. The aim of the study was to check the participants could tolerate the treatment meaning whether it appeared to be relatively ‘safe’ in these individuals. The study was very small, so researchers couldn’t establish whether the treatment could potentially prevent the progression of MS. Their observation was that those participants who received the highest
dose of myelin antigen containing white blood cells showed the largest reduction in attacks on myelin. Full results of the trial were published this week in the journal ‘Science Translational Medicine'. A priority for the MS Society Dr Susan Kohlhaas, head of biomedical research at the MS Society, said: “Treatments that could stop the progression of MS are urgently needed and this is a priority for the MS Society. Being able to stop the immune system specifically attacking myelin while keeping it fully functional poses an exciting potential therapy for people with MS. “We were interested to see this novel way of re-programming the immune system was shown to be well tolerated in this very small study. More research is now needed and we eagerly await the results of any future larger clinical trials of this therapy.” Future research Researchers are hoping to carry out a larger phase 2 trial, which will further test if the treatment is safe in people with MS. It will also test whether there is evidence that the treatment can be effective in slowing or stopping the progression of MS.
Carers Week have also produced a guide to help people prepare to care. Prepared to care? Released as part of Carers Week 2013, the findings show that: • 75% of carers were unprepared for all aspects of caring. • 81% of carers say were not aware of the support available. • 35% believe they were given the wrong advice about the support on offer. The research outlines the emotional, physical and financial effects that caring can have as people are not prepared for the impact of their caring role. The report shows that carers often struggle to balance work and caring responsibilities, with 45% of carers saying they had to give up work. It also highlights how carers’ physical, emotional and mental wellbeing can be affected. 61% of carers have experienced depression and nearly all carers surveyed (92%) say they feel more stressed because of their caring role. Ron Brown, who is 68 and cares for his wife Jan who has MS, says: “To get the help, you have to do everything yourself. It’s difficult to access too. Most carers don’t know they can have an assessment of their needs. Carers will struggle on, seeking help Carers Week research reveals carers’ for the person they care for rather than experiences in UK themselves. Being a carer is not a job you New research from Carers Week of over apply for, it’s something you step into as a 2,100 carers has revealed that many carers husband, a wife or a partner.” lack support and information when they first Celebrating and supporting carers take on a caring role, and were unprepared Sue Allison is strategic lead for carers at the for all aspects of caring. The findings from MS Society: “Families and carers have told the report, Prepared to Care? show that us that because MS can be a fluctuating support is not being made available to new condition, it is really difficult to feel prepared carers. With around 6.5 million carers in the to care. There are times when an MS UK and 6,000 people taking on a new relapse can mean that the person they caring role every day, the charities within support may suddenly have increased care the Carers Week partnership including the needs which can tip the balance of being MS Society are calling for the government, able to cope with increased caring GPs and health and social care responsibilities alongside work and other professionals to ensure that more support family commitments. is given to carers from day one of their caring role. 6
Sent in by Judy Reed: The real laws of nature Law of Mechanical Repair -After your hands become coated with grease, your nose will begin to itch and you'll have to pee. Law of Gravity- Any tool, nut, bolt, screw, when dropped, will roll to the least accessible corner. Law of Probability- The probability of being watched is directly proportional to the stupidity of your act. Law of Random Numbers- If you dial a wrong number, you never get a busy signal and someone always answers. Supermarket Law- As soon as you get in the smallest line, the cashier will have to call for help. Variation Law-If you change lines (or traffic lanes), the one you were in will always move faster than the one you are in now. Law of the Bath - When the body is fully immersed in water, the telephone rings. Law of Close Encounters- The probability of meeting someone you know increases dramatically when you are with someone you don't want to be seen with. Law of the Result- When you try to prove to someone that a machine won't work, it will. Law of Biomechanics -The severity of the itch is inversely proportional to the reach. Law of the Theatre & Hockey Arena At any event, the people whose seats are furthest from the aisle, always arrive last. They are the ones who will leave their seats several times to go for food, beer, or the toilet and who leave early before the end of the performance or the game is over. The folks in the aisle seats come early, never move once, have long gangly legs or big bellies and stay to the bitter end of the performance. The aisle people also are very surly folk.
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The Coffee Law As soon as you sit down to a cup of hot coffee, your boss will ask you to do something which will last until the coffee is cold. Murphy's Law of Lockers If there are only 2 people in a locker room, they will have adjacent lockers. Law of Physical Surfaces- The chances of an open-faced jam sandwich landing face down on a floor, are directly correlated to the newness and cost of the carpet or rug. Law of Logical Argument-Anything is possible if you don't know what you are talking about. Brown's Law of Physical Appearance If the clothes fit, they're ugly. Oliver's Law of Public Speaking- A closed mouth gathers no feet. Wilson's Law of Commercial Marketing Strategy As soon as you find a product that you really like, they will stop making it. Doctors' Law- If you don't feel well, make an appointment to go to the doctor, by the time you get there you'll feel better... But don't make an appointment, and you'll stay sick. This has been proven over and over with taking children to the paediatrician. June Recipe A Japanese dish of crisp fried chicken in a rich curry sauce. Simon Rimmer's version has less fat but all the flavour of the original.
Ingredients For the sauce 1 tsp cumin seeds 1 tsp coriander seeds 1 tsp fennel seeds 1 tsp fenugreek seeds 2 cardamom pods 2 tbsp vegetable oil 2 onions, sliced 2 garlic cloves, sliced 2 small red bird’s-eye chillies 1 x 400g/14oz tin chopped tomatoes 2.5cm/1in piece root ginger, peeled, grated 1 tbsp ground turmeric 250ml/9fl oz chicken stock 1 tbsp honey 1 tbsp soy sauce For the katsu curry 150g/5½oz plain flour, seasoned with salt and freshly ground black pepper 200g/7oz Japanese panko breadcrumbs 2 free-range eggs 4 chicken breasts, cut into strips 4 tbsp vegetable oil 3 carrots, sliced 2 spring onions, chopped cooked basmati rice, to serve Preparation method For the sauce, fry the spices in a dry frying pan for 2-3 minutes, then grind to a powder in a mortar and pestle. Heat the oil in the same frying pan used to the fry the spices and fry the onions for 8-10 minutes, or until golden-brown. Add the garlic, chilli, chopped tomatoes, ginger and turmeric. Bring the mixture to the boil, then add the stock and simmer for 25 minutes. Leave to cool slightly, then blend the mixture until smooth, then stir in the honey and soy sauce. Keep warm. Meanwhile, for the katsu curry, sprinkle the flour and breadcrumbs onto separate plates. Beat the eggs in a bowl. Dredge the chicken pieces in the flour, then dip in the egg and coat in the
breadcrumbs, shaking off any excess. Heat the oil in a frying pan over a medium heat and fry the chicken pieces for 2-3 minutes on each side, or until golden-brown. Remove from the pan and set aside to drain on kitchen paper. Meanwhile, cook the sliced carrots in a pan of boiling water for 4-5 minutes, or until tender. Drain. To serve, stir the cooked carrots and spring onions into the curry sauce. Spoon the cooked rice onto serving plates, spoon over some sauce and top with the fried chicken pieces. Who is this?
I am not sure who this is but I have seen him before somewhere, I don’t like not remembering things, it make my ears twitch. I will have a cup of tea and think again. Help needed to find the mystery person!!!! I have been rummaging through some old photos that I found, when I came across this one. If anyone has any idea or knows who this is, I would love to hear from them. Please either phone or text me on 07721868170 or drop me an email: nikkijenkin@googlemail.com Many thanks Nikki Jenkin xx
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June Quiz answers 1 2 3 4 5
BAR ELK ORDER BEEFEATER ARMY
6 ANA 7 ONE 8 EWE 9 BRIEF 10 DEPOT
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 13 58, 29, 62, & 7 August September
Target £2,000.00 Actual to date £914 Money Boxes 9 9
July quiz Number in bracket indicates number of letters in each answer 1 Molten rock (4) 2 Belief (4) 3 Changes direction (5) 4 Has (4) 5 Looked at (4) 6 Wagers (4) 7 Hold up (5) 8 Mr Reed (singer) (3) 9 Christmas treat (5,3) 10 Contributor (5)
What’s this mystery object?
Thought of the Month I know that everything happens for a reason but sometimes I wish I new what that reason was
Happy birthday to: 5th Glynis Donnelly 8th Pam Aldwinckle 11th Jackie Rowse 15th Caroline Green 27th Carole Whalley 28th Jenny Newport
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June mystery object
Poetry Corner Lots of you had trouble finding all ten differences, that’s probably because there are only eight. Sorry, I won’t do it again but it did get you going didn’t it!
To see a world in a grain of sand and heaven in a wild flower Hold infinity in the palm of your hand and eternity in an hour
Can you spot the 10 differences
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The County Executive Committee meeting The County Executive Committee had their first meeting on the 29th May, representatives from each branch were in attendance. The discussion was constructive and forward thinking with the main points being: Working with Merlin: Working with the Merlin Centre was agreed to be a positive step forward in creating awareness together giving an opportunity to show what branches are and what they can offer. Malcolm Glister was delegated to meet with Loraine long with regard to the following initiatives: ♦ Work with the Merlin Centre for a shared stall at the Royal Cornwall Show and Stithians show in 2014. ♦ Possible shared fund raising. ♦ A county branch and Merlin awareness day with radio Cornwall at the Merlin Centre, followed by an evening social event, using Fire ‘n’ Ice as entertainment. Branch Awareness materials: Malcolm Glister showed the original County Brochures used during the awareness project, Chris Heaman suggested that we use them as both county and branch brochures, the committee agreed. Malcolm Glister would email the brochures to the committee for any changes in telephone numbers and get a quote for printing. Committee members to notify MG of changes. Posters: Brian Southgate noted that posters did not work efficiently, with the issue of them being removed and not read. The committee agreed and decided to stick with brochures at this time. Chris Heaman suggested that the brochure could be called “Cornwall Together”, this was agreed by committee.
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The Media: There was great debate on the media awareness issue resulting in the following initiatives: ♦ Open and awareness day at the Merlin Centre with radio Cornwall, Malcolm Glister to contact Lawrence Reed and Loraine Long. ♦ Bring back the original press release from the awareness project and make it a county release rather than one for each branch. This will ensure a “Cornwall Together” image. The press release would be sent to all media throughout the county to coincide with the open day at Merlin. Committee members to email Malcolm Glister with their local press contact details. ♦ Drive to Rome: Brian Southgate informed the committee that two people were going to drive from St Blazey to Rome in a car costing no more that £350. They will be donating sponsorship to the MS branches in Cornwall. It was suggested that each branch can collect sponsors and keep the money raised. More information to be obtained Consistency of service: The committee agreed that it was difficult to sustain a consistent service throughout the county with varying available funds. This issue would be addressed as and when the county branches have become more established by working together with a higher profile and increased funds. To be discussed at future meetings. County Website: Malcolm Glister explained that South Cornwall’s IT manager was in contact with London regarding the national website and was negotiating a county website with links to each branch. There have been great difficulties in the past, hopefully to be resolved in the near
future. Each branch would have the opportunity to enter their details on their own web page. Malcolm Glister to report at next meeting Young people’s group: Following the conference in April Malcolm Glister has requested a meeting with Julie Collingbourne to discuss a young people’s group. Pending that meeting South Cornwall has put an article in the June magazine to encourage young people with MS to come forward if they wish to form a sub group of South Cornwall, the sub group would have its own committee and work independently. South Cornwall would fund the project. The committee were encouraged to do the same in their newsletters to encourage young people into the MS society. CAB Since the CAB discussions at conference Malcolm Glister met the CAB representative to gain information on where the referrals were coming from and the future costs of the service. The results are: 36 from South Cornwall 20 West Cornwall 27 Mid Cornwall 2 North Cornwall Most CAB appointments are referred from Treliske MS nurses, this could be the reason that North Cornwall only have 2 as most people affected by MS in North Cornwall attend Exeter or Plymouth hospitals. South Cornwall currently pays for the service (£3,350.00) But to effectively continue with the volume of referrals the CAB would need more time and therefore a higher charge. Malcolm Glister suggested that we all pay some towards the service as the benefits are county wide.
Chris Heaman suggested that branches pay for the usage in their area. Malcolm Glister is to continue discussions with CAB and determine a price for more hours; this would be used to calculate the cost for each branch using the area referral information. County Grants: South Cornwall grants officer is to look into available grants open to the county. Amalgamation of Branches: Mid and North Cornwall – It was felt that due to the geographic location and rural areas it was not possible to amalgamate at this time but the committee agreed that it would be good for each branch to work together where possible. South and West Cornwall- West Cornwall are holding their AM after the executive committee meeting; therefore we await a decision from them in the near future. Malcolm Glister has written notes for West Cornwall on the benefits of a merge. Have your say! The formation of the County Executive Committee is an exciting development in the history of Cornwall’s MS branches, working together is an essential part of becoming successful in offering services to our members. However, our members must have a voice in the decisions that are made, branches are there to support membership so your communication is important to your committees. If you have any thoughts on how you would like to see your branch progress please send them to me, all of your comments are important and will be taken on board. Help us help you, get in touch now! I will report again after the next executive committee meeting on the 24 July Thank you for your input Malcolm
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The Bleeper
by Mary Smith
The Bleeper has enriched my life. I am totally disabled by multiple sclerosis; by totally I mean my legs don’t work, my right arm and hand don’t work; the only things that do work for me physically are my left hand, I can move my head, I can talk and think and swallow. For many other things I need the help of someone else: feeding, washing, bathing and showering, drinking, working my computer, putting the wireless on and off, brushing my hair or teeth. To call a nurse or carer or friend I press the bleeper pad, which is fixed high up on my nightie or shirt, by moving my chin or fingers. After the first press a man’s voice says “Nurse call”; the second thing he says is “phone on/off”, the third thing is “space”. After that there is a list of various peoples’ phone numbers beginning with Adrian (my husband) and then my siblings, then friends, and then matters relating to turning the telly on or off and then the various channels. There is a display screen on a stand beside my bed or wheelchair which lights up each option as he talks. I now know it off by heart. Once the bleeper hits the person or thing I want to activate I bleep it and then it will dial the number or put on what I want. This all works due to the Possum. Possum in Latin means “I am able”. The numbers are put in by John who, I believe, covers the south-west of England; it is his voice on the Possum. If people change their numbers I phone him to register the change on the Possum. Since I got the Possum about five years ago it has changed my life. In this nursing home I have my own telephone which my husband has installed so now I can
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answer a phone call, turn on the television, and ring a friend. Of course, I can’t move my wheelchair out of the way or get a DVD out and put it in the machine. So my life has been improved but there are still many restrictions on me. Even writing this has involved Sue and she’s taking the dictation. People are always coming up with good ideas like talking books – I can’t read because I can’t turn over the pages – or voice-recognition computer programs; the list could go on but I don’t wish to think of other “helpful” suggestions. The bleeper has a voice so people relate to it; some knock it by mistake and immediately get an answer like “call nurse”! This can infuriate some people and so they push it again, which causes the red light above my bed to go on which means that the nurse call is activated; so then they will turn the red light off. Other people, if they knock it, will proudly wait till the man says “space” and then knock it which turns it off. I was given a particularly sensitive bleeper as I couldn’t use my hand very effectively on it. Once, when I had a meal, the man giving it to me took off the bleeper to avoid knocking it. I said “You will remember to put it back”- he said “Of course!” When I’d finished the meal, as he walked out we were talking and he forgot to put the bleeper back on me. Without the bleeper I felt totally terrified; on one side of me the lady had died, and on the other side there is a lady of 102 who is very deaf. Luckily the carer had left my door open and so I shouted “Help!” a number of times. As I was working out that someone would be coming with my supper in about an hour, I yelled a bit more and then gave up, feeling totally helpless.
Luckily a lady at the end of my corridor, who is not deaf, sounded her buzzer and someone came down. I shouted again and they came in and gave me my bleeper. The person who had left it off came down and immediately apologised to me. I realise that the carers are very aware of how dependent we feel. People are always saying they can’t imagine how it must feel to be me. By writing this I hope I can give them some idea of my predicament.
Betty Oxley It is with regret that we report the death of Betty Oxley, Betty was the newsletter editor for the Carrick branch some years ago. We send our condolences to her family and thank them for the funds donated in lieu of flowers.
Mary Smith 24.5.13 Thank you for your input Mary. Last month we read how Mary Smith’s son Henry ran the marathon, well here he is finishing the run, I think we will leave that sort of thing to you Henry. Well done.
From Chris Sargent On the 2nd May Captain Mike George and the crew of the Lifeboat launched the boat for Allan. He fell at home and broke his hip. There followed a number of problems and Mike advised and helped us through them. All this was completely unexpected and made me realise how important the South Cornwall Branch can be in an emergency. The support, kindness and friendship has been reassuring for us both. I would like to thank the Branch Members for all the telephone calls, cards and visits to Hospital we have had. It really has been so helpful with Allan's recovery. He will probably be in Marie Therese House for another 3 to 4 weeks. I have been sending Physiotherapy Vouchers out for a while now and know how important these are for our Members. Please support our Branch and Committee. Come to meet everyone at the events the Branch organises for you, there is no charge for most of them and you will have a very warm welcome. The benefits of having the South Cornwall Branch are important to all our members. Hopefully you won't need the emergency help that we did but, it is there for any member who needs it. Please don't take this help for granted. The Committee needs support and encouragement too.
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page Megan’s
The Coma Part 2 When I wake up the next morning I feel awful! My bodies completely stiff and my eyes are sore and aching. I look over at the clock 12pm! I scan the room in front of me and can’t look at her bed and I begin to wonder what would it be like right now if we hadn’t had that argument and she hadn’t been in the crash and if she was here with me now. All of her stuff is in exactly the same place she left it. I lie back down and wrap myself up like a cocoon in my soft, warm duvet cover and suddenly in a dream world, Everything’s light and fluffy. It feels like I’m floating, I’m not the only one here of course. I’m with Taylor; she’s happy and radiant just like she used to be before she got in with the wrong crowd. We are jumping all over the bouncy marshmallow road only stopping when we got hungry.
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We’re flying in the air, soaring, we do loop-the-loops everywhere and it feels amazing, no worries not a care in the world, just the two of us alone together in dream world. I wake up to the alerting sound of the fire alarm, great, Lizzie’s cooking again. I clamber out of bed, wrap my dressing gown around me and I make my way down the stairs. It’s like a mad house, Kids running free, everywhere they could. Two are even playing catch with an expensive vase. Christine’s obviously been left in charge again. I walk into the living room and everyone suddenly stops what they’re doing and sit down quietly. I slouch down on the un-comfy sofa and turn on the TV but I’m not really watching it, I’m going back into dream world. A happy, care-free place. At three the hospital calls they say that there’s no difference and I was welcome to go in if I wanted to. Christine offered to drive me when the others get back but I said that I’d rather walk. She looked unsure but nodded anyway. I get ready and then head out of the door.
It’s cold and it looks like it’s going to rain but I carry on anyway. I get to the hospital soon enough and head to Taylor’s room. Nothing’s changed except there’s another bunch of flowers on the bedside table alongside the other ones. I walk around to the chair and sit down. I start telling her about my dream and how I’d do anything to go there with her right now. No response. I tell all of the places we could go to if she wakes up. No response. I tell how much I miss her and wish that she’d wake up. The machines suddenly start beeping loudly. Nurses run into the room and usher me outside… To be continued……….
South Cornwall branch MS Youth Group West “Making Sense”
Jaspers Jokes I am filling in for the youth group this month as they are very busy at school with exams and other activities. A blonde, a redhead, and a brunette were all lost in the desert. They found a lamp and rubbed it. A genie popped out and granted them each one wish. The redhead wished to be back home. Poof! She was back home. The brunette wished to be at home with her family. Poof! She was back home with her family. The blonde said, "Awwww, I wish my friends were here." A man needed a horse, so he went to a temple and got one. Before he left, the priest told him that it was a special horse. In order to make the horse go, you say, "Thank God," and for it to stop you say, "Amen." So the man left, and a few minutes later he dozed off on his horse. Hours later, he woke up and his horse was racing him towards the edge of a cliff. Just in time, he shouted "Amen!" and the horse stopped a few inches from the edge. "Whew," said the man, "thank God!"
Jasper
Excuse me! Do you have a book called “Husband– the master of wife”
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Sir.. comic department is on the 1st floor
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Read-A-Thon news From the first round of the schools Read-A-Thon the schools raised £2,000.00 This is just a start and we are now encouraging other schools to take part. If you know of a school who would like to get involved in the Read-A-Thon please let me know, there are many benefits to be had both for the students and the schools. I will be happy to come and talk to any school who is interested in taking part.
Schools awareness DVD For some time now I have been working with students from Cape Cornwall School to produce a schools MS awareness DVD. Mike May has been working his magic with the camera and we hope to have something to show by the end of the year. The students have been great and the schools staff support has been second to none. Thank you Cape Cornwall School. Meet some of the students:
I am finalising the presentation of awards and the Oriste competition, by the end of July all schools would have been awarded with their certificates and trophy. The Oriste prize will be awarded to the competition winner, I will publish names and pictures in the August magazine. Malcolm Glister Something seems to be amiss here, as a member of Megan’s youth group and a participant of the Read-A-Thon (I read Brer Rabbit six times) and raised several pounds of carrots for the Christmas dinner. Yet up to now I have not received a certificate, I will be putting in a complaint to Malcolm. For those who haven’t read this book you must hop out and get a copy, great book, kept me up all night reading. I will of course report on the results of my complaint, I have copied to Megan.
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There are eight students on the project and I will publish all their pictures and names in future editions of our magazine. Second DVD The next project is with Megan’s Youth Group, we are going to make a DVD for the Read-A-Thon which will enhance the ReadA-Thon material. I hope to have them both completed by 2014. Working with schools is so important to the MS society, educating young people about MS is setting foundations for the future of our branches and creating awareness of MS.
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 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.
Watch this space
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.
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In next months Lifeboat magazine: Members pages & Magazine Bingo
IMPORTANT NOTICE South Cornwall Vouchers
Youth Group page MS News Megan’s page
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
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