July/Aug 2012 - MS Society Wigan Branch Newsletter

Multiple Sclerosis Society Wigan Branch

Multiple Sclerosis Society Registered as a LTD Company in England and Wales. 07451571

Gene fault explains why group of drugs is ineffective in MSLast updated 09 July 2012

Scientists have discovered why patients with multiple sclerosis (MS) do not benefit from a class of drugs that are effective in other autoimmune diseases.

Researchers at Oxford University found that a genetic variant involved in MS is respoanti-tumour necrosis factor (antiexacerbate MS patients' symptoms.

The team looked at a particular version of a gene called TNFRSF1A, which influences a person's risk of developing MS.

They found that the gene variant causes the TNFR1 protein encoded by the gene to be abnormally short, meaning it is unable to sit on the surface of cells and bind TNF there.

Now we know that the functional effect of the TNFRSF1A gene variant mirrors that of TNF blocking drugs, and this promotes MS risk,' said Adam Gregory, one of the study's authors.

The findings are published in Nature journal and were welcomed by Nick Rijke, director of policy a

He told the BBC: 'This important study has shown that some of your genes can play a part in deciding whether or not you respond to a treatment.

In the future this could help ensure that people with MS are offered the drug treatments that are most likely to work for them.'

Wigan Branch Front Page Newsletter

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

WIGAGene fault explains why group of drugs is ineffective in MSScientists have discovered why patients with multiple sclerosis (MS) do not benefit from a class of drugs that are effective in other

Researchers at Oxford University found that a genetic variant involved in MS is responsible for the ineffectiveness of

tumour necrosis factor (anti-TNF) therapies, which can actually exacerbate MS patients' symptoms.

The team looked at a particular version of a gene called TNFRSF1A, which influences a person's risk of developing MS.

They found that the gene variant causes the TNFR1 protein encoded by the gene to be abnormally short, meaning it is unable to sit on the surface of cells and bind TNF there.

Now we know that the functional effect of the TNFRSF1A gene that of TNF blocking drugs, and this promotes MS

risk,' said Adam Gregory, one of the study's authors.

The findings are published in Nature journal and were welcomed by Nick Rijke, director of policy and research at the MS Society.

'This important study has shown that some of your genes can play a part in deciding whether or not you respond to a

In the future this could help ensure that people with MS are offered the drug treatments that are most likely to work for them.'

August Newsletter 2012

Newsletter July/August 2012

1139257/SC041990

Page 3Stress and MS

Page 5 Therapy quiz answers

Page 7MS Fund raiser

Page 10Case studies

WIGANGene fault explains why group

nsible for the ineffectiveness of TNF) therapies, which can actually

The team looked at a particular version of a gene called TNFRSF1A,

They found that the gene variant causes the TNFR1 protein encoded by the gene to be abnormally short, meaning it is unable to sit on the

Now we know that the functional effect of the TNFRSF1A gene that of TNF blocking drugs, and this promotes MS

The findings are published in Nature journal and were welcomed by

'This important study has shown that some of your genes can play a part in deciding whether or not you respond to a

In the future this could help ensure that people with MS are offered

Newsletter 2012

Multiple Sclerosis Society Wigan Branch 2 Newsletter July/August 2012

We are putting a few feelers out to see if any members in Leigh and Atherton would be interested in having a coffee morning once a fortnight.

The one we have in the Wigan district is very popular and we thought as it is a bit far for the members of Leigh and Atherton to travel to Wigan, you may

like such an event at Leigh and Atherton. If you are interested in this suggestion, please phone Janet Anderson on: Tel: 07878709102 or

Shop phone: 01942 323 836 and we will help arrange it, Thank you!!ŀŀŀ ŀŀŀ

Coffee morning at the Mount Hotel, Wigan, everyTuesday at 11am, next one being, August 7th 2012

ŀŀŀ ŀŀŀ

A provisional date of the 22nd September 2012Has been given for a one day event of Getting to Grips.

It will be hosted by the Wigan Branch, and Denise Winterbottom will be arranging speakers and events of the day, so watch this space!!...

Our Charity Shop, and drop in Centre, Situated in the Galleries, (Old Index shop) in Wigan,

Is doing really well!ŀŀŀ ŀŀŀ

The drop in centre is very popular and has passed on much needed advice to the Wigan People, and has brought us new members who didn’t even know

there was an MS Society in Wigan.

Also, on behalf of the Wigan Branch, I would like to say a big “Thank You”To all the people who have donated to the shop.

And to all our Volunteers who work so hard to keep the shop open, all the year round.

Events Page


Stress and MS Disease activity12 July 2012

Author: MS Trust

Managing stress may reduce MS disease activity according to research published in the journal Neurology.The study involved 121 people with MS.Half took part in a stress management programme over five to six months involving regular sessions on relaxation, problem solving, enhancing social support and managing symptoms such as pain, fatigue and anxiety. Participants were followed for a further five to six months after the end of the programme. The other half were kept on a waiting list for sessions and acted as a control group.

MRI scans showed that 77% of people on the stress management programme showed no new lesions or areas of damage in their nerves. In the control group the proportion was 55%.

Once the programme was finished, the benefits were not sustained.

The researchers are unclear as to whether this was down to people not continuing with the coping skills they had learned or if there was some aspect of taking part in the training sessions, such as the support and contact with the therapist that was producing the effects on disease activity.

Quick Crossword 17

Across1. Obscure (5)4. Nimble (5)7. Monumental (7)8. Fencing sword (4)10. Test (5)13. Woodwind instrument (5)14. Celestial body (4)17. Innovator (7)19. Carapace (5)20. Raucous (5

Down1. Smooth fabic (6)2. Precious stone (3)3. Simple (4)4. Bee house (6)5. Imprecise (7)6. Reverberation (4)9. Oval (7)11. Saunter (6)12. Blood vessel (6)15. Optical device (4)16. Ursine mammal (4)18. Uncooked (3)

Multiple Sclerosis Society Wigan Branch 4 Newsletter July/ August 2012

When they say dog food is new and improved,… Who tastes it?

The uncertainty continues for many MS nurses25th July 2012 by laura.percival

The MS Trust has always been committed to the MS specialist nurses and therapists because we know how much difference they make to people living with multiple sclerosis.

The nurses are there at the end of the phone, at the clinic and many are able to make home visits. They understand what its like to live day to day with MS and can give expert advice on symptoms, therapies, treatments – any issue, big or small. They are passionate about making sure that people with MS can manage their condition, get access to the care and support they need and can focus on living their life rather than dealing with their disease.

But things remain uncertain for many MS nurses. Posts are coming under threat, services are being reviewed and like all health services, they are being asked to prove their worth. Our MS Nurse Support Programme continues to be in high demand. We are regularly being contacted by nurses where services are being cut back: vacant posts aren’t being filled, nurses are

being pulled onto the wards to cover where there just aren’t enough staff and posts are being downgraded with no reduction in the amount or complexity of work they are being asked to do.

In the last four months alone, we have supported more than 15 services to try and secure their future and keep the level of support they provide from being eroded. Led by our Specialist Nurse Advisor, we offer a personal response to every enquiry, helping to draft documents, compile evidence and provide advice about the latest policy initiatives. We ensure that every MS specialist is given all the help they need to remain in post and able to meet the needs of the people they support.

“What would we do without the MS Trust?”MS specialist nurse needing advice on complex issue of costs of the service

“It was great to have so many resources to use from the MS Trust … thank you for your support.”MS specialist nurse defending her role

We are so grateful to you all for helping to keep our MS Nurse Support Programme going and we wish we could tell you that services are secure. The truth is that the challenge is greater than ever. Please help us to give every MS specialist nurse all the help they need to continue to deliver great care to everyone with multiple sclerosis. Any donation, no matter the size, can really make a difference. If you are feeling adventurous and want to do something bold to raise money for the MS Nurse Support Programme our fundraising team is full of ideas.

by Amy BowenDirector of Service Development


<<< My lovely daughter created

this on the computer

HI EVERYONE! UPDATE SINCE MAY/JUNE NEWSLETTER

Hi, for those of you who I haven’t yet met, I am Emma the resident Counsellor/Hypnotherapist at the Wigan Branch of the MS Society. I apologise to clients who have had to wait for appointments between 21st May and 21st June, while I was away for a month. I had a business/holiday trip to Spain where I am working towards running retreat holidays over there in addition to work with the MS Society (which I am now a member of, ahem!). Watch this space for future information…

WHAT YOU’VE BEEN WAITING FOR… QUIZ ANSWERS FROM LAST TIME!!!

1) False. If you know how, you can hypnotise yourself.

2) False.

3) True, it is called auto-suggestion or ideo-motor response. I personally do not use it but know how to.

4) False

5) True. It is a natural state so we all have. Boredom is one example.

6) False! (See above)

7) True. BUT only if you want to and are hoping to.

8) True.

9) True, BUT only if they want to.

10) False. (BUT don’t expect to walk out from a session 2 stone lighter)

Give me a call if you want to book an appointment for Counselling/Hypnotherapy or to get more information. The staff at the shope will be happy to help too. I can be

contacted on 01942 796854 / 07984 819840. Or email me on [email protected].


Wigan Branch MS Society:Contact Number: 07963345329

National MS Society

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: 020 8438 0984Mob: 07919698308

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

Carolyn Cairns 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 Ince, WiganMarsh Green Community Centre,Kitt Green Road, Wigan, WN5 0EFPhone No: 01942 217 696Mobile No: 07759286285

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


Jack Osbourne diagnosed with MSAuthor: MS Trust

Jack Osbourne, the son of Black Sabbath frontman Ozzy and former X Factor judge Sharon, was diagnosed earlier this year after he lost 60% of the vision in his right eye.

The 26-year-old, who has recently become a father, announced his diagnosis in an interview published this weekend. Jack said he had experienced a range of emotions.

"While I was waiting for the final results, I got really, really angry," he said. "I'd just had a baby; work was going great I kept thinking: 'Why now?'"

Jack, with the help of his fiancée Lisa, is maintaining a positive outlook. "Being angry and upset is not going to do anything at this point, if anything it's only going to make it worse 'adapt and overcome' is my new motto."

MS is the commonest disease of the central nervous system affecting young adults. It is typically diagnosed when people are in their 20s and 30s, a period that also can include higher education, decisions about jobs and careers, about buying a house and about starting a family.

When first diagnosed with MS, people often experience a variety of emotions, ranging from shock and disbelief to anger and fear, even - for some people - relief that at last they have a diagnosis

"Jack's experiences reflect those of many other young people diagnosed with MS as they are taking on some of the key challenges of life such as parenthood, career decisions and financial commitments. But with access to good information and to the right treatments and support from health and social care professionals, MS need not be the devastating diagnosis that many people feared."

Pam Macfarlane, Chief Executive, MS Trust

Rick Halsall receives British Empire Medal in Queens Birthday honour listJune 2012

Author: MS Trust

We are delighted and proud that Rick has been honoured in this way. Rick is one of the MS Trust's most energetic and loyal fundraisers, having started his support for us back in 2008 and since having trekked and cycled in four different continents and raised over £52,000 for our charity!He shows no sign of slowing down as he recently completed a Snowdon climb and a Coast to Coast cycle ride before going on to cycle from Wembley to Blackpool last week, gaining sponsorship and raising the profile of multiple sclerosis and the MS Trust along the way. Pam Macfarlane, Chief Executive of the MS Trust says "Congratulations Rick -a very well deserved award for an incredible man!"


“Can someone tell me? If dad loves this nappy, so muchWhy doesn’t he wear it!..

My lovely family, (Carol Editor) Minus Mum the photographer

I like it really,I have too!

You may remember me! I arrived last Christmas when you were all at the Ball.And my Nana was so excited.

Sam, my brother and Ihaving fun at the airport

“Look at me!!Sitting up by myself on the swing. How clever am I”

“Me and my daddy Jeff,on holiday”


To keep up to date with all that ishappening in your branch

Log on our Website;www.mssociety.org/wigan

Free PilatesClasses

Every Tuesday@

The Therapy CentreMarsh Green Community Centre,

Kitt Green Road,Wigan, WN5 0EF

Pilates class 1.00pm - 2.00

“Plus our new Class”

Which has started at theCommunity Life CentreUpper George Street

Tyldesley

Every Tuesday @ 3pm-4pm

With our Neuro-Physio TherapistVicki

Please phone Janet to book a Session!

Phone: : 07878709102 or the Charity shop,

On: 01942 323 836

The classes are free to MS members and MS non-members.

Paid for through donations and fundraising.

Volunteering

Have you any spare time on your hands? Looking for something interesting to do?Our Branch is looking for…A Chairman and a Treasurer…

We would love to fill these positions As quickly as possible, so if you have a few hours to spare each month (or know of someone who does) and wish to put them to good use, please come along informallyand see what we do.

If you feel then, that you would like to fill one of the above vacancies, training and support will be given.

If you have an interest to join uscall: 01942 323 836’ or

Email:[email protected]

“Thank you”

Multiple Sclerosis Wigan Branch 10 Newsletter July/ August 2012

Case studies: Life in the system

Ministers want to reform social care

Many believe social care is in crisis. Councils are struggling to keep pace with rising demand and the squeeze on their funds.

But for more than 1m elderly people and 500,000 younger people with disabilities council-funded care provides a lifeline.

What is it like for those who use the system?

The client's story

David, 76, lives in sheltered accommodation. He has severe mobility problems and relies on carers four times a day.

But he says he is finding it harder and harder to get the help he needs.

"My condition means that I have great difficulty moving around. I can only manage a few steps with a walking frame. And it is hard for me to do even the simplest of tasks like picking things up or opening an envelope," David says.

"I rely on carers to help me with my personal care - morning, noon, afternoon and night-time. My local authority has already had to pare down my home care service as much as it can.

"For instance, the carers are already hard pushed to get me out of bed, washed, toileted, dressed and breakfasted, with the bed made, in the allotted 45 minutes time.

"It's a tough job for the carers because my mobility is so restricted."

The carer's story

Sheila is 75 and in recent years has found herself caring for her husband, Tom, and her son, Craig.

Tom has had Parkinson's disease for the past five years and needs daily support, while Craig, 37, has Down's syndrome.

He works, but still needs his mother's help with everyday activities, like washing and dressing. She has tried respite care, but was not happy with the service.

The demands on her time are compounded by the regular visits she makes to see her mother and sister, who are in care homes

"Caring has got a lot harder as I've got older. I can't cope as well as I used to.

"My health is generally good but I get tired quicker. I get aches and pains - I suffer from arthritis."

The daughter's story

Marian's late father had a stroke at the age of 67 and other severe health needs.

He was looked after by Marian's stepmother, Pearl, until his health deteriorated so much that he went into a care home.

Marian said: "When dad's condition deteriorated, he was moved to a nursing home. Sometimes he was well looked after, he was changed regularly and turned in his bed to avoid bedsores.

"But I found that at weekends he would not be dressed and got out of bed as that was when they have staff shortages.

"His room often smelt of urine. It was very strong and took your breath away. I could not sit next to him.

"Dad was always a very clean man and I just hope that he did not know what was happening to him."


DonationsThe residents of Callander Court,

Worsley Hall-Raised a whopping £162 at the Diamond Jubilee Street party despite the terrible weather……

A big “thank you” to all those who took part

Councillor Bob Brierly-Raised £853.78pAt the Three Sisters race circuit, Ashton, Wigan. A Big “Thank you” go to him for organising this event

Mrs Rita Moore donated £50 in memory of Mr John Cubby.

“Thank you all so much”

Wigan Branch

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

Chair person: VacancyTreasurer: Vacancy

Vice Chairman: Jan Hough

Welfare Support Officer:Leigh & District Martin HoughWelfare Phone No: 07963345329

Volunteer Co-ordinator & Information OfficerTracey WadsworthPhone No: 01942 323 836

Treasurer: Dr Ann ParrTel No: 01257 424 168

Donations: 22 Parkway, Standish Wigan. WN6 0SJ

Editor: Carol CritchleyTel: 01942 207 483Mobile No: 07580894246

[email protected]

Lucky Numbers: Ken SuttonTel: 01942 715 349

Secretary & Social Media Officer:Ben CusickTEl: 07708228714

Shop Facillitator: Janet AndersonTel: 07878709102

Social & Events co-ordinator:Vacancy

MS Charity Shop Phone No:01942 323 836Email: [email protected]

Solution to Quick Crossword 17

MS symptoms are mostly felt not seen.

I might look good but my body is throwing a

fit inside….

Multiple Sclerosis Society Wigan Branch Back Page Newsletter July/August 2012

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 are individual 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

.

Friendship isn’t a big thing, It’s a million little things.

Have a Great Day!

Wigan MSS “Lucky Numbers”Results

Draw June 2012

1st £40 No 42 Mrs V Mason

2nd £20 No 22 Mrs J Ball

3rd £10 No 76 Mr B Foy

4th £10 No 180 Mrs I Wright

Draw July 2012

1st £40 No 144 Mr P Jones

2nd £20 No 186 Mrs C Bradley

3rd £10 No 42 Mrs V Mason

4th £10 No 119 Mr A Hickey

8 months remaining if you wish to join our lucky numbers. Please call Ken Sutton on: 01942 715 349

Documents

July/Aug 2012 - MS Society Wigan Branch Newsletter