Multiple Sclerosis Society Wigan Branch
Front Page
Newsletter July/August 2012
WIGA WIGAN August Newsletter 2012
Gene fault explains why group of drugs is ineffective in MS
Page 3 Stress and MS
Last 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.
Page 5 Therapy quiz answers
Researchers at Oxford University found that a genetic variant involved in MS is responsible responsible for the ineffectiveness of anti-tumour tumour necrosis factor (anti-TNF) (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.
Page 7 MS Fund raiser
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 and a research at the MS Society. 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.' Multiple Sclerosis Society - Registered Charity Numbers 1139257/SC041990 Registered as a LTD Company in England and Wales. 07451571
Page 10 Case studies
Multiple Sclerosis Society Wigan Branch
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Newsletter July/August 2012
Events Page 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!! Coffee morning at the Mount Hotel, Wigan, every Tuesday at 11am, next one being, August 7th 2012
A provisional date of the 22nd September 2012 Has 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!
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.
Multiple Sclerosis Society Wigan Branch
Stress and MS Disease activity
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Newsletter July/August 2012
Quick Crossword 17
12 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.
Across 1. 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 Down 1. 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
The uncertainty continues for many MS nurses 25th 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
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Newsletter July/ August 2012
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 Bowen Director of Service Development When they say dog food is new and improved,… Who tastes it?
Multiple Sclerosis Society Wigan Branch
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Newsletter July/August 2012
<<< 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 emma.hypnotherapist@sky.com.
Multiple Sclerosis Society Wigan Branch
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Newsletter July/August 2012
Contact List Wigan Branch MS Society:
Central Duty Team: 01942 828 777
Contact Number: 07963345329
National MS Society
Disability Resource Centre: 01942 700889 Crossroads: 01942 700 612
Address: 372 Edgeware Road, London, NW2 6DN Tel: 020 8438 0700
Social Security Offices: Wigan: 01942 758 000 Leigh: 01942 236 700
Website: www.mssociety.org.uk Email: info@mssociety.org.uk
Continence Advice Services: Tel: 01257 501 340
National MS Helpline 0808 800 8000 (Mon-Fri 9am-9pm)
Wigan Independent Advice Services: Tel: 01942 324 851.
Local Support Development Manager Leo Brightley: Tel, 020 8438 0918 Mob: 07788717589
Young Carers Free Helpline: Tel: 0800 169 3669
Service Development Officer Tracey Cole: Tel: 020 8438 0984 Mob: 07919698308
MS Nurses Denise Winterbottom at Salford Royal (Formerly Hope Hospital)Tel: 0161 206 161 Carolyn Cairns at the Walton Centre Tel: 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, Wigan Marsh Green Community Centre, Kitt Green Road, Wigan, WN5 0EF Phone No: 01942 217 696 Mobile No: 07759286285 Adult Services Area Offices Aspull: 01942 832 592 Golborne: 01942 728 603 Ince: 01942 828 479 Leigh: 01942 404 523 Standish: 01942 832 592 Tyldesley: 01942 404 765 Wigan: 01942 487 901 Carers Centre: 01942 683 711
Shop Mobility Tel: 01942 776 070
Ring & Ride Enquiries: 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 606 086 Monday-Friday: 9.00am-10.30pm Saturday-Sunday: 1.00pm-10.30pm
Support for young people www.mssociety.org.uk/pieces
Aimed at people aged 18 â&#x20AC;&#x201C; 40.
Kids and Teens www.youngms.org.uk
Young Peoples Newsletter!! www.staying-positive.co.uk
Multiple Sclerosis Society Wigan Branch
Jack Osbourne diagnosed with MS Author: 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 fiancĂŠe 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
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Newsletter July/August 2012
Rick Halsall receives British Empire Medal in Queens Birthday honour list June 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 ÂŁ52,000 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!"
Multiple Sclerosis Society Wigan Branch
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Newsletter July/August 2012
My lovely family, (Carol Editor) Minus Mum the photographer “Can someone tell me? If dad loves this nappy, so much Why doesn’t he wear it!..
“Me and my daddy Jeff, on holiday”
I like it really, I have too!
Sam, my brother and I having fun at the airport
You may remember me! I arrived last Christmas when you were all at the Ball. And my Nana was so excited.
“Look at me!! Sitting up by myself on the swing. How clever am I”
Multiple Sclerosis Society Wigan Branch
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 informally and 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 us call: 01942 323 836’ or Email: wiganbranchms@hotmail.co.uk “Thank you”
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Newsletter July/August 2012
Free Pilates Classes
Every Tuesday @ The Therapy Centre Marsh Green Community Centre, Kitt Green Road, Wigan, WN5 0EF Pilates class 1.00pm - 2.00 “Plus our new Class” Which has started at the Community Life Centre Upper George Street Tyldesley Every Tuesday @ 3pm-4pm With our Neuro-Physio Therapist Vicki 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.
To keep up to date with all that is happening in your branch Log on our Website; www.mssociety.org/wigan
Multiple Sclerosis Wigan Branch
Case studies: Life in the system
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Newsletter July/ August 2012
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.
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.
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.
"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.
"His room often smelt of urine. It was very strong and took your breath away. I could not sit next to him.
"It's a tough job for the carers because my mobility is so restricted."
"Dad was always a very clean man and I just hope that he did not know what was happening to him."
Multiple Sclerosis Society Wigan Branch
Wigan Branch Who’s who in the Wigan Branch?
www.mssocietywiganbranch.co.uk Chair person: Vacancy Treasurer: Vacancy Vice Chairman: Jan Hough Welfare Support Officer: Leigh & District Martin Hough Welfare Phone No: 07963345329 Volunteer Co-ordinator & Information Officer Tracey Wadsworth Phone No: 01942 323 836 Treasurer: Dr Ann Parr Tel No: 01257 424 168
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Newsletter July/August 2012
Donations The 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 £853.78p At 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”
Solution to Quick Crossword 17
Donations: 22 Parkway, Standish Wigan. WN6 0SJ Editor: Carol Critchley Tel: 01942 207 483 Mobile No: 07580894246 carolandjeff@blueyonder.co.uk Lucky Numbers: Ken Sutton Tel: 01942 715 349 Secretary & Social Media Officer: Ben Cusick TEl: 07708228714 Shop Facillitator: Janet Anderson Tel: 07878709102 Social & Events co-ordinator: Vacancy MS Charity Shop Phone No: 01942 323 836 Email: wiganbranchms@hotmail.co.uk
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
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
The MS Newsletter is published by the Wigan Branch of the MS Society We give regular up-dates about MS and what is happening locally in the MS Community Editor: Carol Critchley Contact No: 01942 207483 E-mail: carolandjeff@blueyonder.co.uk
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
No
119
Mr A Hickey
£10
Disclaimer All 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.
8 months remaining if you wish to join our lucky numbers. Please call Ken Sutton on: 01942 715 349
Please send to the above E-mail address
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Friendship isn’t a big thing, It’s a million little things.
Have a Great Day!