March/April 2011 MS Society wigan branch Newsletter

Multiple Sclerosis Society Wigan Branch Front Page Newsletter March/April 2011

Multiple Sclerosis Society - Registered Charity Numbers 1139257/SC041990Registered as a LTD Company in England and Wales. 07451571

Wigan Newsletter Branch

Sam is a 16-year-old Labour Party member whose mum has MS. At the Labour Party conference he met the shadow health minister to talk to him about what mattered to people affected by MS…..

How it started

“MS is such an unpredictable illness and this can have devastating consequences on families and friends,” said Sam. “I’ve always believed that MS doesn’t just affect the person with the illness, but everyone connected to them, and that can include their husband, their children and their friends.”

Sam had already organised non-school uniform days to raise money to help people affected by MS, and he wanted to do more.

What happened next?

Sam said: "With the results of the General Election I felt that it was important to maintain an understanding and knowledge of MS in the new government. I therefore wrote to my local MP who replied stating that he had forwarded my letter to the Secretary of State for Health, Andrew Lansley, who then wrote to me.”

Sam received a letter from the Health Minister, directly taking up the concerns he has raised about MS with his MP. But he also arranged to meet with the Shadow Health Minister, Andy Burnham, as well as

the Shadow Home Secretary, Alan Johnson.

As a result..... Sam met for a one-to-one discussion with Mr Burnham at the conference about the issues which mattered to him concerning MS, as well as about what made him interested in politics.

I gave them an MS Society badge and talked to them about MS and my interest in politics,” said Sam. “Talking directly to ministers I felt like I was really raising awareness of MS.”

“Sam first realised the connection that MS can have with politics when he discovered that it had been included in Labour’s Disability Discrimination Act.

A few months ago he signed an online petition to urge the last government to do more to support those affected by MS.

“It was fantastic to go one step further and to meet politicians face-to-face and talk to them about issues which affect me.

I was delighted to support the MS Society at my first annual Labour party conference in2010 and will be delighted to do so in the future, in and out of future conferences.”

Sam's story: raising MS issues with shadow ministers

Multiple Sclerosis Society Wigan Branch 2 Newsletter March/April 2011

Dear Members, The nights are slowly starting to draw out and a clear sign that spring is almost here with the snowdrops and bulbs springing into bloom can only lift us and put a spring in our step. It’s not only the flowers that come to life, but us humans too, especially after the long cold dreary winter we have had to endure.I feel a slight spring in my step already or could that be for the fact, I am off on a short break with the girls from our coffee mornings. Flying out to Spain at the end of the month, “can’t wait”, hope these young ones look after me. Have you started planning for your summer?Carol News Editor

Events ProgrammeCoffee Mornings: Every fortnight, commencing:

Tuesday April 5th and 19th

May 3rd the 17th and May 31stJune 14th and 28th – July 12th

Monthly Get Together:

Our monthly “Get Together” will take place at Wigan and Leigh every alternate month.

Our next one will be taking place at the “Mount Hotel Wigan” on April 7th

At 7.30pm.

At the “Harvester Leigh” on May 5th at 7.30pm

At the “Mount Hotel Wigan” on June 2nd at 7.30pm

At the Harvester Leigh on June 30th at 7.30pm

The Leigh Group Family and friends of Christine Stevenson, have donated to her friends in the Leigh group £300 pounds to enjoy as they please.

They have decided on two Barge Trips:

The barge trips will take place on: Tues June 14th & Tues July 12th 2011We plan to meet at the Leigh Sports Village, Sale Way, off Atherleigh Way, Leigh WN7 4JY@ 9.15am for a 9.30am start

Both trips will be free due to the large donation left to the Leigh group.And will be open to all members of the MS Wigan Branch.

There is a £5 Non-returnable deposit to secure your place. We stopFor lunch at one of the canal side pubs and the £5 deposit is returned. It is up to you whether you have a sandwich or a banquet.We ask all Wheelchair users to come with a carer.

Ring Carol (Newsletter editor) for more details. Phone: 01942 207 483


Mobility aid market study18 March 2011

The Office of Fair Trading (OFT) is undertaking a study of the mobility aids market, which includes both wheelchairs and scooters and also items such as stair lifts, bath aids and specialist seating.

The study is looking at three key areas:

x Are consumers able to find appropriate information to help them buy equipment that is right for them?

x Are consumers being treated fairly by suppliers?

x Is competition in the wheelchair market helping consumers?

x In replying to the consultation, the Therapists in MS group, in conjunction with the MS Trust, point out that unbiased professional advice on suitable options for mobility aids is available from occupational therapists but many people are never referred to occupational therapists. Even if they are referred, waiting lists or delays caused by limited resources often mean that people are not able to receive professional advice when they need it and instead rely on information from suppliers or from friends or family

Similarly, NHS wheelchair clinics exist throughout the country but often have long waiting lists for assessments. The standard wheelchairs are often not suitable for people with MS and the level of information about buying and using a wheelchair available to people using the NHS voucher scheme is inconsistent.

We are pleased to see that the OFT is looking at an area that is completely unregulated and where people with MS are given little help. For some people mobility aids make the difference between good quality of life or a struggle and for them to not be given the help they need to access the most appropriate equipment is not acceptable. We await the report of the OFT with interest".

The OFT aim to publish the market study in September 2011.

“Northern Area Open Meeting, Leyland near Preston – Saturday, May 21”Each year the MS Society holds open meetings which are your opportunity to share your views about what the MS Society should be doing locally and nationally. You’ll also get the chance to meet other members, trustees and senior staff and hear about what we’ve been up to locally over the year. In addition to updates and opportunities for feedback those attending will be able to be part of one of these three important workshops:

x Governing the Society – the way the Society operates

x Developing membershipx What do you want from the MS

Society locally?The open meeting for the Northern Area is on Saturday, 21 May at the Leyland Hotel, Leyland Way, Leyland, Preston PR25 4JX from 10.30 for 11.00 until 15.00. It’s accessible with refreshments and lunch provided.


Meaningful SupportThe Asian Support Group for Lancashire,Greater Manchester and South Cumbria.

The Group was formed to raise awareness and bring together people in the AsianCommunity.

The groups meet in Blackburn and it is very informal; just chatting, sharing information and giving a bit of support.

We are also involved in making people aware of MS through information provision and holding events with Neurologists and other health professionals.

If you can’t make a meeting but want information or to speak to someone from the Asian community then we are happy to help.

To find out more: contact Sarifa Adam on:0795 1594 080, or at Sarifa1@ hotmail.co.uk

Quick Crossword Puzzle 09

Across1 Constant4. Evidence of past injury (4)8. Haggard (5)9. Fiends (5)10. Salutary (10)13. Clearly (10) 17. Dialect (5)18. Copious (5)19. Part of an egg (4) 20. Pressing (6)

Down1. Mentor (4)2. Evade (5)3. Point (3)5. Breed of dog (5)6. Answer (6)7. Outcome (6)11. Mystery (6)12. Collector's item (6)14. Motionless (5)15. Oversight (5)16. Portable shelter (4)18. Atmosphere

‘Hey girls’ How good is this?.....

One saggy boob said to the other saggy boob:'If we don't get some

support soon, people will think we're nuts’


Silly Joke

An old Irish farmer's dog goes missing and he's inconsolable.

His wife says "Why don't you put an advert in the paper?"

He does, but two weeks later the dog is still missing.

"What did you put in the paper?" his wife asks.

"Here boy" he replies.

MS Society funds second Stage of Myelin repair research.In December we announced great news that scientists at the University of Cambridge had found a way of reversing damage to myelin using stem cells. The work was funded by the MS Society.

We’ve now committed more than £2 million over the next five years to fund the second stage of this research.

Professor Robin Franklin and his team at the MS Society Cambridge Centre for Myelin Repair will work collaboratively with world leading experts in MS (like those based at the Edinburgh Centre for Translational Research and the MRI unit at the Institute of Neurology) to carry out the next stage.

In the first stage of the study researchers found a drug that could potentially repair myelin; in stage two they’ll:

x Test this treatment for how effective it is in people with MS, and at what dose

x Trial it for safety in people with MS

x Build on recent advances in myelin repair research, so it’s possible to identify more potential MS treatments in the future

This next phase of the study will startin April 2011 and finish in2016 – if the work proves successful, further clinical trials in larger numbers of people will take place to reveal whether the potential treatment is safe and effective for people to use. Then it’ll then need to go through thenecessary regulatory hurdles before its licensed and available; we’re still some way off a drug coming through, but these are positive steps.

Simon Gillespie, Chief Executive of the MS Society, said: “We’ve been consistently impressed with the world class work of the Cambridge Centre for Myelin Repair and we’re delighted that the generosity of our supporters enables us to continue funding this outstanding research centre.”

Research News


Wigan Branch MS Society:Contact Number: 07963345329

Multiple Sclerosis SocietyMS National Centre

Central Duty Team: 01942 828 777Disability Resource Centre:01942 700889Crossroads: 01942 700 612

Address: 372 Edgeware Road, London,NW2 6DNTel: 020 8438 0700

Website: www.mssociety.org.ukEmail: [email protected]

National MS Helpline0808 800 8000 (Mon-Fri 9am-9pm)

Local Support Development ManagerLeo Brightley: Tel, 020 8438 0918Mob: 07788717589

Service Development OfficerTracey Cole: Tel: 02084380984Mob: 07919698308

MS NursesDenise Winterbottom at Salford Royal(Formerly Hope Hospital)Tel: 0161 206 161

Kerry Much at the Walton CentreTel: 0151 529 5645

Karen Lea, Community Matron for Neuro Sciences. Taylor Neuro Community Team, STOT Unit, Leigh Infirmary, The Avenue, Leigh WN7 HIS.Tel: 01942 264 255

Therapy Centre Marsh Green Community Centre,Kitt Green Road, Wigan, WN5 0EFPhone No: 01942 217 696Mobile No: 07759286285Opening Times: Monday 9.00am to 12pmWednesday 9.00am to 1.30pmThursday 9.00am to 1.00pm

Adult Services Area Offices Aspull: 01942 832 592Golborne: 01942 728 603Ince: 01942 828 479Leigh: 01942 404 523Standish: 01942 832 592

Tyldesley: 01942 404 765Wigan: 01942 487 901Carers Centre: 01942 683 711

Social Security Offices: Wigan: 01942 758 000Leigh: 01942 236 700

Continence Advice Services:Tel: 01257 501 340

Wigan Independent Advice Services:Tel: 01942 324 851.

Young Carers Free Helpline:Tel: 0800 169 3669

Shop MobilityTel: 01942 776 070

Ring & RideEnquiries: 01942 492 252, 7.30am-5.00pm

Booking Wigan Area:01942 829 444, 9am-11am

Booking Leigh / Atherton:Tel: 01942 829 400, 9am-11am

Wigan & Leigh Wheelchair Service:Tel: 01204 390 742 or 01942 481162(24hr-365 Days a Year)

Carers Helpline: 01942 606 086Monday-Friday: 9.00am-10.30pmSaturday-Sunday: 1.00pm-10.30pm

Contact List

Support for young peoplewww.mssociety.org.uk/pieces

Aimed at people aged 18 – 40.

Kids and Teenswww.youngms.org.uk

Young Peoples Newsletter!!www.staying-positive.co.uk


Carol’s future is now crystal clearI read this story in Borough life and thought it was of interest as this Lady has MS and it just proves a diagnosis of MS is not the end of a future.

When doctors delivered the bombshell, bus driver Carol Clayton knew life would never be the same again.

Carol who hails from Leigh, was suffering from multiple sclerosis (MS), a devastating disease which attacks the central nervous system: her body’s ‘Communication network’

The job she loved, with a local bus company, was over; her outlook uncertain.

“My confidence was hit hard,” admitted Carol, “but equally I was relieved to finally know what was happening to my body and determined not to let my illness get the best of me.”

Carol focused solely on raising her twoyoung daughters and slowly trying to come to terms with her condition. During those ten years Carol remained positive and resolute, Carol’s breakthrough came last spring when a chance conversation at the benefits Agency led to a referral to Works Solutions, a local organisation which helps people improve their skills and get back into work.

Carol’s unique talent for making Swarovski crystal bouquets was identified as a potential business opportunity. Another local company, Blue Orchid, which specialises in one-to-one support for people looking to start up their own business, helped her to develop a business plan. With a further £1000 grant from Wigan Council, Carol was on her way – and she’s never looked back. Since last August her bouquet businesshas attracted several large bookings from well-established national bridal companies.

“Without the support and encouragement that I’ve received I do not think I would have taken

the steps to set up my own business,” Carol explained.

“The grant has allowed me to purchase crystals, complete my website and fund my exhibition stands at wedding fairs.

“I have also secured a stand at the Tatton Park Wedding Fair in January 2011. I can’t wait!

“Even with a disability life goes on, there is help and advice out there for everyone. I would advise anyone who has a passion in life to get out there and follow their dreams.”

Way–to Work solutions are ‘Taylor made’Taylor Parkinson has a passion for cooking-and a disability that for too long prevented employers from spotting his potential.

After three long years on incapacity benefit, Taylor went along to Leigh based WorkSolutions. Who aim to improve skills and secure employment for local people!

They helped Taylor develop a personalised action plan, including clear job goals and worked on building his confidence.

“I told them about my ambition to open a café in Leigh town centre,” Taylor explained “and they put me in touch with Blue Orchid, which provides business advice services for people looking to start up their own business.”

Chris Halliwell, business advisor at Blue Orchid helped Taylor develop a business plan and together they found business premises in Leigh. Since the grand opening, business has grown gradually, and Taylor also now caters for outside parties and other celebrations.

“Blue Orchard and Wigan Council have helped turn my life around” exclaimed Taylor. “I wake up every morning and I feel like I have a purpose. I would urge anyone who needs help to be proactive about it and get in touch.”

Taylor’s coffee house is on King Street, Leigh and is open now!....


Free YogaLessons

Are being held every FridayBetween

3.30pm & 4.30pm@

Hope School, Kelvin GroveMarus Bridge,

Wigan

Join Sue Johnson & Friends

For a very warm Welcome

For further informationPhone: 01942 207 483

Free PilatesClasses

Every Tuesday@

The Therapy CentreMarsh Green Community Centre,

Kitt Green Road,Wigan, WN5 0EF

@1.00pm & 2.00pm

Please phone Heather to book a

Session!

Phone: 07702025280 or01257 421 207

Find us on facebook!

Newly diagnosed people often think of the MS Society as being a little

old fashioned.

But we are really challenging that.

Look on our new face book site!

Lucky Numbers

Have you all got your lucky numbers, for the start of another

year?

Please get in touch with Ken Sutton!”

Phone number:01942 715349

Donations£50 donated to our branch from

Mrs Hesketh

Proceeds of a successful coffee morning

Donated £1,080, to our BranchFrom

Family & friends Of Christine Stevenson

Cellulite doesn’t pay rent to live on my thighs,

So I’m getting a court order to have mine evicted



Temperature affects thinking, in MS21 February 2011

Author: MS Trust

New research has demonstrated the effects of changes in temperature on thinking skills in people with MS.

Researchers looked at how warmer weather affected learning, memory and information processing. 40 people with MS and 40 controls were given a series of thinking tests.

When the results were plotted against the weather conditions, the people with MS were found to score 70 percent better on cooler days than on warmer days.

Temperature had no effect on the scores of the control group.

The results of the research will be presented at the American Academy of Neurologists (AAN) annual meeting in April.

The effects of heat on fatigue are recognised, but this research demonstrates how small changes in temperature can have a significant effect on cognition.

The MS Trust has developed a website called StayingSmart for people who want to know more, about how MS can affect thinking.

StayingSmart aims to support learning about cognition in MS, build confidence in managing symptoms and to allow people to share knowledge and experiences.

The site includes tips for coping with day to day problems sent in by people with MS.

The Kent Regional Team organised a wonderful event at the Maidstone Leisure Centre for people affected by MS in the Kent region.

Forty-seven people - made up of a wide selection of family members - attended the event which, offered an opportunity for each individual to share both the challenges and the positive aspects of being affected by MS.

The supportive environment and sharing of experiences allowed the groups to gain personal insight and to value the lives of others in similar situations. Adults and children found the day enjoyable and rewarding as they were able to share concerns in an empathic environment.

The children especially had a great time being creative with crafts items whilst also being able to share their thoughts and feelings with each other. They formed an extremely supportive group, with the opportunity to have a ‘voice’ and to be heard by others in similar situations. There were some brilliant budding artists amongst them who made some fantastic items of art.

The event was highly-valued and at the end it was nice to have the opportunity to use the swimming facilities and the children’s play area, a fun finale to a very fruitful day.

Many thanks to everyone for all their hard work, and making it such a success.


My Journey with MS"It seems strange that being diagnosed with Multiple Sclerosis could be a good thing, a positive thing, that Multiple Sclerosis could make someone a better person."

Back in 1991 Anna Healey was told that MS was devastating, that it would destroy her body and undermine herself worth. The overwhelming response from people she met back then was negative. She recalls "no-one ever discussed how empowering something like this could be ... my disease has taught me to accept my faults, my strengths, my weaknesses, my talents - my self ... it has also taught me to enjoy life in all its guises, the small pleasures as well as the big ones".

Anna Healey's world was turned upside down, when at 28 years of age she found out she had multiple sclerosis. The reality of her diagnosis initially seemed to be a life sentence, and coming to terms with the effects of MS left her feeling depressed and dependent.

The severity and onset of MS varies from one person to another, but for Anna it meant she lost the effective use of her legs and had difficulty walking and maintaining her balance due to paralysis and spasms. Suddenly the simplest of tasks became near impossible due to the pain and limited mobility, as she tried to care for a small baby, and look after her health. Hiring a wheelchair and finding the courage to use it, was one of many physical and emotional hurdles along the way, a tough decision for such a self-sufficient and fun-loving person.

These days Anna has rediscovered her independence, she drives (a white convertible no less, with modified hand controls), works part-time as a drama teacher and helps run a surf shop. She has a wicked sense of humour, and enjoys zipping into the disabled spot in her convertible and challenging the conventional wisdom and stereotypes of people with disabilities, who apparently should only be seen driving a sensible car!

Not an athletic person in her youth (in fact someone who actively avoided all sport and had an excuse for every occasion) Anna has become an accomplished solo sailor,

Competing in the national and world championships, as well as being the only women to participate in the 2000 Paralympic trials. She is also an ambassador and role model for people with disabilities, and through her public speaking and media activities raises awareness about MS in schools and amongst the general public. Her successes, enthusiasm, optimism and determination to enjoy life, continue to inspire others to achieve their best.

Anna's book is a very personal and honest account of living with multiple sclerosis. She talks openly about the effect MS has on her life, and that of her family and close friends. The difficulties and despair she felt initially and the incredible new highs she has found. After seeking to find a reason and answer the question "Why me?" she came to the realisation "Why Not Me?" and decided to "live life to the max" from that point on. This change in attitude marked the beginning of many new adventures and was a turning point. That's not to say life suddenly became easy, but she says she has learnt to get on with it, and found there is plenty to enjoy.

Don't try and predict the future, your life wasn't as predictable as you thought before the diagnosis, so don't beat yourself up

over what could have been. Don't compare yourself to anyone else with MSbecause no two of us are the same.

Interview with: Anna Healey


Carer’s world radio

Is broadcast from the UK, connecting carer’s with news, information, and

support….

www.carersworldradio.com

Wigan Branch

Who’s who in the Wigan Branch?www.mssocietywiganbranch.co.uk

Chair person: Vacancy

Vice Chairman: Craig Kenworthy

Welfare Support Officer: Jan Hough

Welfare Phone No: 07963345329

Treasurer: Dr Ann ParrTel No: 01257 424 168

Donations: 22 Parkway, Standish Wigan. WN6 0SJ

Editor: Carol CritchleyTel: 01942 207 [email protected]

Lucky Numbers: Ken SuttonTel: 01942 715 349

Fund Raising: Heather ReadTel: 07702025280

Secretary: Tracy [email protected]

Solution to crossword 09

Ode to M.SMy lovely wife has got itThe thing we call M.SIt throws our life around a bitWe end up in a mess.

Our Doctor cannot help at allAlthough he really try’sBut he’s not there when it’s too muchAnd she just sits and cries.

Like when her eye is playing up Or spasms through the nightEspecially around her heartThat gives us such a fright.

We used to do so many thingsAnd loved a five mile walkBut M.S put a stop to thatSo now we sit and talk.

But I guess we are lucky For after thirty yearsWe still share all the good timesThe bad times and the tears.

We now enjoy our grandchildrenAnd have another on the wayTo see and hear these childrenHelps us through another day.

Some days when things are going wellI thank the Lord above but the thing that keeps us goingIs simply known as “love”

Andy Budge

Multiple Sclerosis Society Wigan Branch Back Page Newsletter March/April 2011


The MS Newsletter is published by theWigan Branch of the MS Society

We give regular up-dates about MS and what is happening locally in theMS Community

Editor: Carol CritchleyContact No: 01942 207483E-mail: [email protected]

DisclaimerAll the views expressed in the publication areindividual and not necessarily the view or the policy of the charity and its supporters.

We will be pleased to receive your comments, poems, jokes, or any articles you wish to share with us.

Please send to the above E-mail address

Life is like a hot bath. It feels good while you’re in it,

But the longer you stay in, the more wrinkled you get.

Have a Great Day!

Wigan MSS “Lucky Numbers”Results

Draw No 11-Feb

No’s Sold 164

1st £40 No 5 Mr K Wright

2nd £20 No 10 Mr M Wharam

3rd £12 No 73 Mr H Bate

4th £10 No 48 Mrs M Wiszowaty

Draw No 12-MarchNo’s Sold 164

1st £40 No 102 Mr L.C. Shepard

2nd £20 No 166 Mr T Turton

3rd £12 No 41 Mr M.J. Blake

4th £10 No 42 Mrs V. Mason

Log on to our website; www.mssociety.org.uk/wigan;

To keep up to date with all that is happening in your branch

Charity 1139257/Sco41990

March/April 2011 MS Society wigan branch Newsletter

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