May/June 2011 MS Society wigan branch Newsletter

Multiple Sclerosis Society Wigan Branch Front Page Newsletter May/June 2011

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

Multiple sclerosis sufferer Debbie Purdy holds her husband's hand.

Purdy is noted for her campaign to change the laws of assisted death in the UK.

Wigan BranchNewsletter

June 2011

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Residents in the Swiss city of Zurich are going to the polls this weekend (Sunday 15th May) over two issues relating to assisted suicide.

The first proposal, to ban the practice, is likely to be defeated. However, the second proposal -which would see assisted suicide limited to residents only – is expected to get greater support.

The BBC reports that some Swisscitizens are uncomfortable with the number of foreign citizens travelling to Switzerland to die as a result of the practice being outlawed in their own countries.

Opinion polls have indicated that the majority of citizens support the individual’s right to choose when to die, however 66 per cent do not approve of so – called ‘suicide tourism’.

“We cannot solve the dying problems of the rest of Europe,” Bernard Sutter,

Of Switzerland’s biggest assisted suicide organisation ‘Exit’ said’

“And we think it very sad that very ill people have to travel thousands of kilometres to go to a liberal country to die there”.

Reports- Deutsche Welle.

Zurich to vote on ‘suicide tourism’ laws

Multiple Sclerosis Society Wigan Branch 2 Newsletter May/June 2011

Events ProgrammeDear Members,

This year we have been chosen as one of the Wigan Mayors chosen charities. This is quite an honour and we are very excited about it.

This is also one of the reasons why our events calendar is not quite as large as usual, we have yet to sit down with the Mayor and her team to get times dates, and places for the events we’ll be doing, so as soon as we know, we will let you know.

Carol

Coffee Mornings: Every fortnight, commencing:

June 14th and 28th – July 12th 26th, Aug 9th

Monthly Get Togethers:

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

Our next one will be taking place at the

At the Harvester Leigh on June 30th at 7.30pm, the Mount Orrell July 28th 7.30pmHarvester Leigh on August 25th 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

This trip is now fully booked;

Halloween Party: (back by popular demand) Will take place at theWigan Cricket Club, Parsons Walk, Bulls Hey, Wigan.At 7.30 on the 26th October 2011


MRI can track areas of damage in the brain over time

Research in Depth

Below are two examples of how tracking changes in the brain over time can help people with MS.

Diagnosis

Many people who have experienced a first MS-like attack (clinically isolatedsyndrome) will not be diagnosed with MS straight away. This is because it is not always possible for doctors to rule out other conditions that might be causing lesions in the brain. Sometimes people with clinically isolated syndrome will go back months later for another MRI scan. The presence or absence of new lesions in the brain will often help to confirm or rule out a diagnosis of MS. The advent of MRI has made the process of diagnosis of MS quicker for many people.

Treatment decisions

MRI offers doctors a window into the brain and allows them to see

how a person's MS is progressing. Decisions to take treatments for MS should not be taken lightly and sometimes it's useful for clinicians to build up an informed picture of what is going on in the brain before any treatment decisions are made. One of the requirements before a patient is offered Tysabri is that they have an MRI scan to prove that MS is active in those patients.

With Deepest Sympathy

On behalf of the MS Society Wigan Branch, we would like to send our deepest condolences to Edna Sandland and her family.

Edna’s husband recently passed away and we understand how devastating this must be for her and her family.

So please accept our deepest sympathy, and to you and your

family,“Keep your chin up”

We have another lady Barbara Brodie, who was a long time member of the former MS Society Leigh Branch. She sadly died unexpectedly of Pneumonia.

All her friends from that branch would like to send their

“Deepest condolences” to her partner Nev.



A Man sitting at home on the verandah with his wife say’s,

“I love you”.

She asks, "Is that you or the beer talking?"He replies, "It's me.......talking to the beer."

Quick Crossword No: 10

Across1. Metallic element (4)3. Fruit (5)8. Insular (9)9. Bend (5)10. Female relative (4)14. Portent (4)15. System of reasoning (5)18. with identity concealed (9)20. Proverb (5)

Down1. Nothing (4)2. Roman counterpart of Greek Poseidon (7)4. Step (4)5. Garland (3)6. Courageous (5)7. Arboreal mammal (5)11. Imaginary creature (7)12. Poisonous (5)13. Subject (5)16. Highly excited (4)17. Diminutive (4)19. Type of fish (3)21. Jealousy (4)

Short breaks and Activities Fund

Now available across the UK

The MS Society’s new approach to respite care and short breaks is being supported with the development of the new Short Breaks and Activities Fund (SBA Fund).The Fund links with the Society’s ambition to provide greater individual support to people with MS wherever they live. It has been piloted in Wales, Northern Ireland and Scotland and is now available to people affected by MS in England.

The SBA Fund can consider grants for people with MS and their carers to help them access a broad range of short breaks and respite care. Grants can be considered for:

x Respite care, either in the home or at a care centre or similar

x An activity, experience, short break or holiday for someone with MS or their carer, or a series of activities

x Salary costs for a professional carer needed to help someone with MS, or their carer, have a break either in their home or elsewhere.

x Travel, accommodation and disability equipment hire costs linked to having a break

x Some complementary or alternative therapies

All requests will need to be accompanied by a letter of support from a health or social care professional or carers support worker.

If you have any questions, or you would like to request an application form, please contact the grants team at the MS National Centre in London on 020 8438 0700. If you live in Scotland please call 0131 335 4050. Alternatively, email us using the email address on email Grants Team



Nice to review surgery for CCSVINice (the National Institute for Health and Clinical Excellence) has announced that it will be considering guidance to the NHS on balloon angioplasty with or without stenting as treatment for CCSVI.

Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory developed by Paolo Zamboni, a vascular surgeon at the University of Ferrara in Italy. His theory is that stenosis (an abnormal narrowing or obstruction) in blood vessels that takes blood from the brain allows a build up of iron. This is then able to cross the blood-brain barrier and cause inflammation and damage to cells in the central nervous system, leading to MS symptoms.

It has been proposed that CCSVI can be treated by surgical procedures either by inflating balloons (balloon angioplasty) to open the narrowed veins or by inserting a stent (mesh tube) to support the vein.

A consultation document about the safety and efficacy of the surgical procedures will be issued summer 2011 with a provisional publication date for the final guidance set for the autumn.

New disease modifying drug launched19 April 2011

Author: MS Trust

Fingolimod (Gilenya) has been launched as a treatment for more active relapsing remitting multiple sclerosis.

Fingolimod, which is taken as a daily capsule, was approved by the EMA, the European drug regulator, in March. It is licensed as a second line treatment for relapsing remitting MS that can be used if people continue to have relapses or find the relapse rate has increased despite a year's treatment with one of the first line drugs (Avonex, Betaferon, Copaxone, Extavia, Rebif). It can also be used with people with rapidly evolving severe relapsing remitting MS - two or more relapses a year.

Clinical trials showed that fingolimod reduced the relapse rate by about half when compared to a dummy placebo and reduced disability progression by almost a third. The initial dose of fingolimod will need to be monitored in hospital as it can cause temporary changes in heart rate and blood pressure, and there will be ongoing monitoring for other potential side effects.

NICE (the National Institute for Health and Clinical Excellence), which issues guidance on whether treatments should be funded by the NHS, will begin its appraisal of fingolimod in July with a decision expected before the end of the year.

Pam Macfarlane, MS Trust Chief Executive, welcomed the launch saying, "The MS Trust is delighted that European regulators have approved fingolimod (Gilenya) as a

second line disease modifying treatment for relapsing remitting MS.

The fact that fingolimod is a capsule will, we know, be of great interest, but the advantage of ease of administration has to be set alongside increased risks. We hope that NICE will produce a positive recommendation for fingolimod rapidly to ensure funding on the NHS.

This is especially important as people with MS who continue to have relapses or who have highly active MS do not have time on their side."


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


Low levels of sunlight coupled with glandular fever could increase the risk of developing multiple sclerosis (MS), say researchers. Story Date: April 20, 2011

There are many suspected risk factors for MS and the disease is known to be more common away from the equator. The study, in Neurology, suggested that low levels of sunlight could affect how the body responds to infection.

The MS Society said the study, based on hospital admissions data in England, added weight to existing evidence.

MS affects about 100,000 people in the UK and is more common in the north of England than in the south.

There are also high levels of both vitamin D deficiency and MS in Scotland, where the MS Society is considering carrying out separate research on a possible link between the two. Around 10,500 people have MS in the country, the highest prevalence of the condition in the world.

With MS the protective layer around nerves, known as the myelin sheath, becomes damaged. Messages from the brain to the rest of the body are disrupted, resulting in difficulty moving, muscle weakness and blurred vision.

Vitamin D is thought to be a key factor in the development of MS” End Quote Dr Doug Brown MS Society. They found 56,681 MS cases and 14,621 cases of glandular fever, which is caused by the Epstein-Barr virus.

The study also used data from NASA on sunlight intensity.

The researchers found that by just analyzing sunlight, they could explain 61% of the variation in the number of MS cases across England.

However when they combined the effect of sunlight and glandular fever, 72% of the variation in MS cases could be explained.

Professor George Ebers, from the University of Oxford, said: "It's possible that vitamin D[which is made when the skin is exposed to sunlight] deficiency may lead to an abnormal response to the Epstein-Barr virus.

"More research should be done on whether increasing UVB exposure or using vitamin D supplements and possible treatments or vaccines for the Epstein-Barr virus could lead to fewer cases of MS."

Dr Doug Brown, head of biomedical research at the MS Society, said: "This work adds weight to existing evidence that MS is caused by a number of factors working in combination.

"Vitamin D has been closely studied in recent years and is thought to be a key factor in the development of MS, we look forward to seeing more research dedicated to this important area."

Pam Macfarlane, chief executive of the Multiple Sclerosis Trust, said: "Further research is needed, but being able to accurately predict the risk of getting MS and identifying preventative measures would be another step forward."

Studies in the UK have suggested that the MS prevalence rate in England and Wales is between 100 and 140 per 100,000, about 170 in Northern Ireland and as high as 190 in Scotland. Individual studies in Orkney have recorded rates of over 200.

It has also been noted that areas of high MS prevalence around the world have been settled by Scottish immigrants, according to the MS Trust. (Source: BBC)

Multiple Sclerosis Society Wigan Branch

“Santa Susana,” Costa BravaEight MS members and coffee morning of on what they thought was a one ofbut they enjoyed it so much it may become an annual event!

We flew off from John Lennon Airport in Liverpool. It was a cold dreary morning but we were all in high spirits. (No the bar wasn’t open) and excited about the coming journey.except Tracy, who had never flown before but whom enjoyed the experience?

I can feel the sun shining already. Vitamin D. Here we come!!.......

Here we all are, all ready to board the plane

“Eh up” Here comes the bus! Up goes a loud cheer and were off!...

Our first morning and off to find the Barcelona train

8

“Santa Susana,” Costa Bravaorning pal’s set

one off holidayt may become an

“

We flew off from John Lennon Airport in was a cold dreary morning but we

were all in high spirits. (No the bar wasn’t open) and excited about the coming journey. All except Tracy, who had never flown before but

We finally found the station and boarded the train to Barcelona.

Looking for ‘Le Ramblasahead” say’s Heather. But Lisa ponders and thinks it’s left. Still - after awhile we found where we were going.

We all had a wonderfulmooch around “La Ramblas”. The train journey back took 1hr and 10minslaughs we had on the ride back toonly seemed like minutes.

ready to board the plane

Up goes a loud cheer

Our first morning and off to find the Barcelona train

Having a rest and a

“Surely this can't be it”

Newsletter May/June 2011

“Santa Susana,” Costa Brava!!....

We finally found the station and boarded the

Le Ramblas’, which way- “straight But Lisa ponders and

after awhile we found

day after having a good mooch around “La Ramblas”. The train journey back took 1hr and 10mins, but with all the laughs we had on the ride back to the hotel, it only seemed like minutes.

Having a rest and a well deserved drink

“Surely this can't be it” - The cries go up!..

Multiple Sclerosis Society Wigan Branch

Santa SusanaWe’ve had a rest and shower and are ready for our evening meal. The food in this hoteMontague) was fabulous and plenty of it.

Oh well we’ve finished now any way. It’s time to hit the bar/lounge.

Heather’s putting in our order; we’re keeping the barmaid busy, see how she’s smiling.

It’s our last night and time to party!!!..

OOP's Tracy's dropped her spoon

“Two pints of lager please” and ****************

“Cheers everyone, what a great holiday

9 Newsletter

“I think the dancing has begun” one with the big Bum?”

Where's our drinks please!!

Santa Susana, Spainand shower and are ready for

our evening meal. The food in this hotel (Aqua Montague) was fabulous and plenty of it.

Oh well we’ve finished now any way.

Heather’s putting in our order; we’re keeping the barmaid busy, see how she’s smiling.

It’s our last night and time to party!!!..

Yvonne, Ruth and Heather

The’re having a good time. Go on girls; show the Spaniards how to have fun!

“It’s an early start in the m

We arose at 6.30am (well some of us did) got on the coach and headed home. Our holiday over!!!...

spoon!!...

and ****************

holiday”!“Is it really time to go to bed,

Newsletter May/June 2011

“I think the dancing has begun” “Who’s the one with the big Bum?”

our drinks please!!

and Heather

having a good time. Go on girls; show the Spaniards how to have fun!

start in the morning girls”!

We arose at 6.30am (well some of us did) got on the Our holiday over!!!...

, I could sit here all night”.


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

@12.00pm & 1.00pm

Please phone Heather to book a

Session!

Phone: 07702025280 or01257 421 207

Find us on face book!

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 yet?

Please get in touch with Ken Sutton!”

Who knows, 2011 maybe your year!

Phone number: 01942 715349

DonationsMr Roy Howat, won £40.00 on our lucky numbers, and then kindly donated it to our branch. Thank You.

Mrs Rose Morris donated £40- she had saved up 1p and 2p coins. Thank you.

The Poacher- collection tub collected £37.99. Thank you.

Rebecca Fernay, raised a mammoth£903.04 – money raised by organising a ‘gig’ at her school

“Thank you so much Rebecca for all your hard works in raising such a large amount of money for our branch. You can be assured; it will be put to good use, in order to help the people with MS, in our Borough.

Thank You


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: Mr Craig Kenworthy Phone No: 07921149171

Welfare Support Officer:Leigh & DistrictJan HoughWelfare Phone No: 07963345329

Welfare support Officer:Wigan & DistrictTracey WadsworthPhone No; TBA

Treasurer: Dr Ann ParrTel No: 01257 424 168

Donations: 22 Parkway, Standish Wigan. WN6 0SJ

Editor: Carol CritchleyTel: 01942 207 483

[email protected]

Lucky Numbers: Ken SuttonTel: 01942 715 349

Fund Raising: Heather Read Tel: 07702025280

Secretary: Ben CusickPhone No:

Vice Chairman: Vacancy

Social & Events co-ordinator:vacancy

We now have two Welfare Officers:Since the Leigh Branch was amalgamated to the Wigan Branch we have found it too big an area for one Officer.

So Jan will do the Leigh side, and Tracy the Wigan side. We think this fair and best for our officers and members.

Info Point, Support Centreand Charity Shop

For those of you that don’t know we have opened anInfo Point, Support Centre and Charity Shop in what used to be the old Index shop at the Gallery Shopping Centre, Wigan.

It has proved to be very successful and is raising awareness of Multiple Sclerosis which was our main aim when we started out on this new venture

When you are next in Wigan pop in and see us, you will get a warm welcome.

We also serve tea and coffee, so you can have a drink and a look around.

Quick Crossword 10- Solution

Multiple Sclerosis Society Wigan Branch Back Page Newsletter May/June 2011


Charity 1139257

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

Middle age is when broadness of the mind and narrowness of the waist

change places.

Have A Great Day!

Wigan MSS “Lucky Numbers”Results

Draw April

No’s Sold 160

1st £40 No 93 Mr Mrs G Conroy

2nd £20 No 24 Mr Mrs D Parry

3rd £10 No 127 Mr E Brown

4th £10 No 25 Mrs S Sutton

Draw MayNo’s Sold 160

1st £40 No 37 Mrs A Davis

2nd £20 No 192 Mr Mrs P Allcroft

3rd £10 No 92 Mr MJ Blake

4th £10 No 186 Mrs C Bradley

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

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

Documents

May/June 2011 MS Society wigan branch Newsletter