MS Matters 103

103 May/June 2012

‘ Yes, I have MS. And ...?’ Janis Winehouse gets on with her life

Sex matters When MS interferes with intimacy

The benefits rollercoaster What to do if your ESA is cut

CONTENTS 03

UP FRONT Celebrating volunteers and carers

04

NEWS Fourth respite care centre transferred to new owners, new exercise guide, and more

06

LETTERS Accessible dental check-ups, air travel for wheelchair-users, and more

10

‘YES, I HAVE MS. AND ...?’

Janis Winehouse gets on with her life

14

FOOTSTEPS TOGETHER Jinx and Selena Jones talk about how their lives have changed as she has required more care

16

EVERYBODY NEEDS GOOD NEIGHBOURS Jackie Woodburne talks about playing a character with MS in long-running soap Neighbours

18

SEX MATTERS MS can affect sexual functioning, but there are always new things to try

24

YOUR SOCIETY MS Life, MS Week, the Society AGM and the MS Helpline

28

THE BENEFITS ROLLERCOASTER What to do if your Employment and Support Allowance is cut

TALK ABOUT MS MS Helpline 0808 800 8000 (Mon to Fri, 9am–9pm; Sat, 10am–1pm) helpline@mssociety.org.uk MS Society website forums www.mssociety.org.uk/forum Facebook group www.facebook.com/MSSociety Twitter http://twitter.com/#!/@mssocietyuk

www.mssociety.org.uk MS Matters 103 01

UP FRONT

MS Matters is available on CD, audio cassette and in large print.

For details, telephone 020 8438 0759.

MS Matters is a Multiple Sclerosis Society publication ISSN 1369-8818 © Multiple Sclerosis Society 2012 Individuals or organisations wishing to reproduce, store in a retrieval system or transmit by electronic, mechanical, facsimile or other means any part of this publication should apply for permission to: MS Matters, MS Society, 372 Edgware Road, London NW2 6ND. To receive MS Matters, contact the MS Society Telephone 020 8438 0759 Email membership@mssociety.org.uk MS Helpline 0808 800 8000 www.mssociety.org.uk Registered charity nos 1139257 / SC041990.

Registered as a company in England and Wales 07451571 Editorial Board Sue Farrington, Hilary Freeman, Jenna Litchfield, Sarah Mehta, Anita Roberts, Anthony Stone Editor Colin Richardson Senior Editor Sarah Westlake

With Volunteers Week in June, I wanted to start the magazine with a big thank-you to each and every one of the 9,000 volunteers across the UK who, between them, give many thousands of hours a year to make a difference to the lives of people affected by MS. Volunteers are the lifeblood of the MS Society and it is their dedication, time and care that makes a real difference to the lives of people affected by MS. Indeed, volunteers played a key role in making MS Life the incredible success it was – the weekend event in April attracted over 3,000 people to Manchester, making it the biggest single MS event in the world. Thank you to all who made it happen and to everyone who took part.

A thank-you also goes to everyone who played a part in helping to complete the transfer of our respite care centres to new providers, who will continue offering services for people with MS. The last of these to be transferred was Helen Ley in Warwickshire in April. It was a long and sometimes difficult process, but we are pleased that we achieved what we set out to, following the respite care review back in 2010.

We will now be focusing more than ever on providing more support, information and opportunities for people with MS in all corners of the UK to access the short breaks and respite that is right for them.

Finally, I can’t fail to note the terrific success of MS Week. We raised vital awareness through the media, including spots on BBC Breakfast and ITV’s Daybreak, reaching millions of people. We created videos that have been viewed more than 20,000 times and experienced unprecedented interest on Facebook and Twitter, with celebrities including Scott Mills and Gok Wan showing their support.

Thousands of people also held a Cake Break, contributing thousands of vital pounds to the cause.

So a final thanks to everyone who took part – we couldn’t do it without you!

Volunteers’ Week runs from 1 to 7 June. For more information, visit www.volunteering.org.uk or call 020 7520 8900.

Design Crescent Lodge, London www.crescentlodge.co.uk Photography Crescent Lodge, London (unless otherwise credited) For advertising sales, contact Nima Azarian, Ten Alps Media Ltd 020 7878 2367 Printed in England by Warners Midlands plc Articles signed by the authors represent their views rather than those of the MS Society.

Mention or advertisement by the MS Society of products or services is not an endorsement by the MS Society, its officers or staff.

From Simon Gillespie Chief Executive of the MS Society www.mssociety.org.uk MS Matters 103 03

NEWS

Sport for all

everyday effects of MS’, that was launched by the Society in MS Week. Simon Gillespie, Chief Executive of the MS Society, said: ‘Because it’s poorly understood, living with MS can turn a simple shopping trip or social event into an ordeal – where strange looks and hurtful remarks can all be part of daily life.

‘Yet people with MS have the same aspirations as anyone else. Most want loving relationships, an active social life and a successful career – and they can have this, given the right support and understanding. Of course, MS presents many challenges, but society can place further unnecessary barriers in the way of people with MS, making it harder than it needs to be to live a full life.’

The disability rights charity, RADAR (Royal Association for Disability Rights), has published a free guide to exercise and fitness – Doing Sport Differently. With a foreword by former worldchampion wheelchair athlete Baroness Tanni Grey-Thompson, the guide has a wealth of advice and information for disabled people who want to take up exercise or get involved in sport. It can be downloaded from www.radar.org.uk or call RADAR on 020 7250 3222 for a copy.

People with MS ‘must accept they can’t have the same opportunities’, says survey One in five (21 per cent) of respondents to a ComRes poll of more than 2,000 British adults think that disabled people need to accept they cannot have the same opportunities in life as non-disabled people. And almost three-quarters (71 per cent) said they don’t know enough about MS. A separate poll of over 1,400 people with MS found that 42 per cent felt that they weren’t considered equal to people without MS. Almost one in three (30 per cent) said they have been visibly ignored because of their condition.

More positively, 41 per cent of respondents said that having MS had strengthened the bond with their immediate family and almost half (49 per cent) said it had led them to take up new hobbies and interests. Over a third (37 per cent) of employed people with MS said that their condition does not impact on their work.

The results of the two surveys, commissioned by the MS Society, were published in a report, ‘Fighting Back – ordinary people battling the 04 MS Matters 103 www.mssociety.org.uk

To obtain a copy of the ‘Fighting Back’ report, download it from www.mssociety.org.uk. For more about MS Week, turn to pages 24 to 25.

Transfer completed for Helen Ley Respite Care Centre The MS Society has completed the transfer of Helen Ley Respite Care Centre in Warwickshire to Castel Froma, a charity based in Leamington Spa. The new provider is committed to continuing to offer high-quality care for people with MS. All four of the Society’s respite care centres have now been transferred to new owners – Leuchie House in Scotland last year, and Woodlands in York and Brambles in Surrey earlier this year. Helen Ley has remained open throughout the transfer process.

Bookings can be made by calling 01926 313 550.

NEWS Professor Martin Rossor, President of the Association of British Neurologists, said: ‘We are disappointed that the government has not committed to establishing neurology clinical networks that would provide comprehensive coverage across the country. This is a missed opportunity that would have brought clinicians together to make real progress on improving patient care, spending money more efficiently and mitigating service variation.’

New Blue Badge Guide for London Our Short Breaks and Activities (SBA) Fund may be able to help with the cost of your break, whether this is a short break, respite care, holiday or activity. To find out more and to apply, contact the Grants team on 020 8438 0700 or email grants@mssociety.org.uk Short breaks: a guide to short breaks and respite for people affected by MS contains further information on travel and holidaying in general. It is available free from the MS Society website at www.mssociety.org.uk or by calling the Info Team on 020 8438 0799 (Mon to Fri, 9am to 4pm).

Neurology patients ‘betrayed’ by the government, say charities People with neurological conditions feel ‘thoroughly betrayed’ by the government, according to the Neurological Alliance, which represents 72 UK charities.

In recent months, as reported in previous issues of MS Matters, both the House of Commons Public Accounts Committee and the National Audit Office have slammed neurological services as ‘inadequate’ and a waste of money.

Responding to the criticism, the Department of Health (DH) refused to implement any of the recommendations for improving services, such as the appointment of a ‘Neurology Tsar’ to help develop a strategy to deliver better services.

Steve Ford, Chair of the Neurological Alliance and Chief Executive of Parkinson’s UK, said: ‘All the evidence from the Public Accounts Committee and National Audit Office has been dismissed by the DH. People with neurological conditions feel thoroughly betrayed and can have no confidence that this government has their interests at heart. The next review is not for three years and this has been a wasted opportunity.’

Sponsored by the London local authorities, the new edition of the Blue Badge Guide for London contains everything that registered blue-badge drivers need to know when driving in the capital – the location of parking bays, car parks and petrol stations, and details of accessible tube stations, taxi ranks, accessible toilets and shopmobility centres. There’s also a useful directory of services, along with parking options for disabled drivers at the main London hospitals and sporting venues and access information for all London theatres.

You can claim free postage and packing (worth £2.50) for every order of the new guide. To order your copy, please visit www.thepieguide.com.

At the checkout, enter LG12aff into the box marked ‘discount code’. Alternatively, phone 0844 847 0875 or send a cheque for £5.99, made payable to ‘The Pie Guide’, to: The Pie Guide, Caledonia House, 223 Pentonville Road, London, N1 9NG.

www.mssociety.org.uk MS Matters 103 05

LETTERS Has Daphne considered the Community Dental Clinics? They should be adapted to treat patients who are wheelchair bound, or they might even have a hoist and trained staff to help you onto the chair. You might need a referral from your current dentist or your GP before they see you. Of course, all these issues came sharply into focus when I was diagnosed with MS myself four years ago and eventually had to stop working. But my advice to you is to phone around dentists or community clinics and see who can help you – there will be someone out there who can.

The problem with dentists In the last issue of MS Matters, we published a letter from Daphne Wright, who was having trouble finding a dentist who could treat her. Daphne explained that she is unable to ‘hop on’ the dentist’s chair ‘because I need hoisting everywhere’. Here we publish a selection of the many letters we received in response to Daphne’s appeal for help.

The General Dental Council has recently introduced a list of specialists called ‘Special Care Dentistry’. Dentists who have a particular interest in treating patients with disability can join this specialist list and they are then listed on the GDC website. They can be found using the register search at www.gdc-uk.org/pages/searchregisters.aspx Sophie Williams, by email Since I became wheelchair-bound, my dentist has been treating me while I sit in my wheelchair alongside his drills and the tools of his trade.

Occasionally, his nurse has to lend a hand, but there is no problem with any of this.

Paul Sharkey, by email I also have primary progressive MS and am confined to a wheelchair most of the time. I am unable to walk properly, but I can stand; however, transferring to the dentist’s chair is extremely difficult, especially as my body goes into ‘panic mode’ and doesn’t respond. My husband comes with me to help; he works away a lot so this is difficult for him.

I get on really well with my dentist and he is very accommodating. The dental hygienist treats me downstairs as I am unable to go upstairs to her room.

The dentist has looked into adapting his practice, but it would be very difficult to do; but at least he is showing some interest. Most dental surgeries are situated in old buildings so this brings problems to adaptations.

Anne Rampton, by email My husband has secondary progressive MS and is bed-bound for a majority of the time. His dentist actually offered him home visits. If he can make it in to the surgery he is seen in a room downstairs and stays in his wheelchair, otherwise his dentist comes to the house.

Rowena Williams, by email

Ralph Glazer, by email As a dentist myself, I’ve treated many MS patients over the years – some who simply needed a bit of support as they sat down, some in wheelchairs who couldn’t get onto the dental chair without assistance and some who were housebound (but, to be honest there’s not so much you can do without equipment in someone’s home).

In some instances it’s possible to work with the patient still in the wheelchair – even for fillings, scaling and polishing. It depends on the equipment being able to reach to the patient and the dental surgery having adequate space for the wheelchair – some simply don’t. It’s not terribly good for the dentist’s back either, but, luckily it tends to be for short periods of time only – which makes it easier for both dentist and patient.

06 MS Matters 103 www.mssociety.org.uk

We can’t all ‘get active’ My step-daughter, Sarah, 34, is in a wheelchair 24/7, cannot do anything, has to be fed and washed, and now has a catheter, which is most degrading. Sarah’s life could not be more worrying for her husband and her family.

Your magazine makes a strong point of telling everyone how people with MS have not allowed it to take over their lives. In Sarah’s instance, as with many other people, this is not the case. People like Sarah cannot find a way to deal with it.

LETTERS You read some lovely stories in MS Matters, and some do give great inspiration for people with MS to fight and get on with their lives. For us and Sarah, we are stuck in a way that makes you wonder what is round the corner. You want Sarah to get up and walk, to be able to speak properly, to be able to feed herself. But, alas, this will never happen.

Your message to ‘get active’ will be of great urgency and hope to many people with MS, but I do hope people will also think of those who cannot.

Meanwhile, we will do our best this end to keep Sarah happy and enjoy what she can do.

Christopher Brennan, by email

Flights of fancy I read the article about the Heaths’ experience of trying to board a Ryanair flight (MS Matters 102) with shock and disbelief.

I was concerned with the seeming failure of the official bodies to take a leading role in this case.

The Equalities and Human Rights Commission (EHRC) is supposed to help people fight disability discrimination and be our champion. Why did they do nothing?

How many people will have to go through the same before they take action and how many people will simply stop using public transport to avoid any risk of a similar experience?

I will certainly be lodging my concerns and complaints with the EHRC about their inaction.

I’d like to encourage other readers to do the same, so the EHRC can be in no doubt as to disabled people’s concerns.

Mags Lewis, Leicester What an absolute disgrace that Josephine and Paul Heath had to go to all that trouble to get onto the Ryanair plane. Not only the way Ryanair treated them but the fact that no other passengers on the plane offered to lend a hand. It would have been so easy for Paul to have lifted her body weight at one end if someone else had taken her legs. At least, more dignified! Just one volunteer. I know, as I have been lifted myself that way in various situations many times. Yes I can understand why the staff did not volunteer due to the so called Health & Safety excuse, but the other passengers?

Most passengers on that plane should be thoroughly ashamed of themselves. So let’s hope, don’t you agree, that they never end up in a similar situation!

The failings of Ryanair and their attempt to blame their sub-contractors is shocking. My daughter’s experience – she has secondary progressive MS – is similar but not as hard to bear.

A Mediterranean cruise was excellent and the cruise line exemplary. The flight to Athens was simple; her wheelchair carried in the passenger section.

The BA return flight did not allow the chair on the plane but insisted it went in the hold. I asked the steward what the procedure would be if the plane had to ditch and was told: ‘There are no personnel or procedures designated for evacuating disabled persons in such an event and the only thing your daughter could do is stay in her seat and pray.’

On arrival, the wheelchair was brought to the exit door but was damaged and could hardly be used.

BA did settle our claim for the cost of a new chair and paid for a hire chair in the interim, however.

Better that, Ryanair!

W D Schwarz, Kent

Open-top cars and blue badges Re: June Turnbull’s letter about open-top cars (Car-parking blues, MS Matters 102). My husband has one, too, which he occasionally takes me out in, and we always worry about putting my blue badge on an open window shelf, what with all this talk about blue badges being stolen. Does anyone have any suggestions?

Judith Seymour, by email

Mrs C Nolan, by email

continues www.mssociety.org.uk MS Matters 103 07

LETTERS Overcoming pain

The eyes have it The article ‘Eyesight and MS’ (MS Matters 100) was very interesting; so when I went for my yearly field-test and eye check-up at Eastbourne District Hospital today I took a copy with me as I rarely see the same person twice and they never seem to know about MS and eyes.

The Registrar read briefly while the drops she had given me started to work. She then said there were quite a few bits she didn’t know so was very grateful. When finished with, she will pass it around those in the eye clinic.

Many thanks for an interesting read.

Jenny Gearing, Membership Secretary, Uckfield, Heathfield, Lewes & District Branch

Keep it to yourself Yes, Karen Lewis (MS Matters 102), I agree with you. I was diagnosed with MS eight years ago. My symptoms were mild in their effect on my life and I decided to tell almost no-one. I considered they didn’t need to know. I was working overseas at the time and my family and close friends in Britain learnt by email and snail mail.

I am now retired and have changed my UK address as well. Only a handful of people know of my MS, just those who need to know in case I am unable to fulfil my voluntary commitments. I would rather not have people looking at me (‘in case you’re not well’) or asking me in sweet, concerned tones, ‘How are you today?’ As I tell a friend locally: ‘Don’t fuss’. People do treat you differently, so just say nowt, Karen.

Margaret Grebby, Lincs

08 MS Matters 103 www.mssociety.org.uk

I read John Houlton’s letter in MS Matters 102 about the amount of pain he is in. I wonder if he knows what is causing the pain. I have secondary progressive MS and I have had a lot of pain over the last 20 years. It badly affected my sleep, as the muscle spasms in my legs also caused hip pain, which meant I was having to turn over in bed every 15 to 30 minutes and I was at the end of my tether.

My pain is caused by spasticity. My consultant started me on gabapentin, but it only worked for a while. For the last 11 years he has been giving me intra-muscular injections of Botox into the muscles at the top of my legs every three-to-six months, depending on when the effects wear off. They work really well and I wondered if this treatment would help John.

Denise Earnshaw, Scarborough Muscle spasms and stiffness (MS Essentials 19) contains details of treatments for spasticity.

Download free from www.mssociety.org.uk or call 020 8438 0799 for a copy.

With reference to the article, ‘Keeping pain at bay’ (MS Matters 102), I wish to point out that several members of the Society’s Leics branch have tried to obtain Sativex through their medical professionals and been told that it is unavailable. No reason was given.

My conclusion is that it is due to cost. Cannabis resin has a street value of £250 per ounce. Apart from this prohibitive cost, it is also illegal to possess.

I would like to suggest that the Society applies for a licence to produce cannabis for the purpose of selling it to members who wish to carry out their own research.

Your article exhorts sufferers not to ‘put up with it’. I say, give us the tools and let us get on with it.

Martin Lennon, Leicestershire

Put your thoughts on paper and send them to MS Matters, 372 Edgware Road, London NW2 6ND or email msmatters@ mssociety.org.uk

PEOPLE

True to herself

Photography: Sharron Wallace

Janis Winehouse is not unused to giving press interviews. She is, after all, the mother of the hugely talented singer-songwriter Amy Winehouse. But when Amy died last summer, Janis could have been forgiven for wanting nothing more to do with the media.

Instead, she has chosen to use her unlooked-for celebrity to raise awareness of MS, something she knows all about from personal experience. Colin Richardson meets a remarkable woman.

10 MS Matters 103 www.mssociety.org.uk

PEOPLE You’d think that Janis Winehouse would have had enough of journalists and photographers by now.

After the most difficult and appalling year of her life, in which she went through a time of profound grief and pain in the full glare of the media spotlight, you wouldn’t blame her for wanting to draw the curtains and turn her back on the world. Instead, when we meet, she is in the middle of a round of television and press interviews to publicise MS Week.

This is typical of her reaction to adversity, for, despite all that life has thrown at her and regardless of what some headline-writers would have you believe, Janis Winehouse is not a tragic woman.

Stoicism is more her style. She talks of ‘getting on with it’ and of ‘keeping going’. Her mantra, oft-repeated, is: ‘Yes, I have MS. And?’ Janis Winehouse never sought fame; it sort of crept up on her. Nine years ago, her hugely talented singer-songwriter daughter, Amy, became a star at the age of 20 with the release of her first album, Frank. Three years later, Amy was propelled to international stardom when her single, Rehab, became a top-ten hit in both the UK and the US. From that moment on, she was rarely out of the newspapers. With her distinctive look – towering beehive-in-a-hurricane hairdo, Cleopatra eyes, lip stud and multiple tattoos – and her complicated personal life, Amy Winehouse was irresistible to tabloid editors and paparazzi alike.

But fame exacted a terrible price. After a long struggle with drug addiction and alcoholism,

Yes, I have MS. And ...?

minutely and cruelly documented by the popular press, Amy died last July from alcohol poisoning.

Up until then, Janis had mostly kept a low profile.

She was seen at Amy’s side at various award ceremonies and she gave one or two interviews, focusing more on her MS than on her daughter’s troubles, but that was about it. She largely left the talking to her ex-husband, Amy’s father, Mitchell.

All that’s changed now. Janis is prepared to take centre-stage, though only for good reason and a good cause. She’s more than happy to talk about MS, to raise awareness of the condition and to raise funds for the MS Society. This poses something of a dilemma for her, however. She’s understandably reluctant to talk about Amy, yet she’s well aware that the media are only interested in her because she’s Amy’s mother.

It’s a difficult line to tread and she’s already almost come unstuck. She gave a live breakfast TV interview (on ITV’s Daybreak) at the start of MS Week. In the middle of a discussion about how her MS affected her, she was suddenly asked how she was coping since Amy’s death and was momentarily lost for words. But it proved to be a minor hiccup in an otherwise polished performance. Janis is a television natural – a straight-to-camera piece, filmed at her home some days before the live broadcast, saw her convey powerfully and effectively the realities of living with MS. Janis was born in New York, 57 years ago, to Jewish parents who had left London to pursue the American Dream. ‘My mother, being my mother, had a friend who had actually gone over to the States,’ says Janis, ‘and had photos of them and their house, their car, and my mother was like, “Ooh, I can have some of that”.’ But Janis’s tailor father ‘wasn’t adventurous; he wasn’t bold’ and her mother’s dreams came to naught. So, when Janis was 18 months old, the family returned from the East Side to the East End. When she was 17, Janis fulfilled a girlhood ambition by going to live in the States for a brief spell, where she worked as a pharmacy assistant at the North Miami Hospital. Back in the UK, she met Mitchell Winehouse, a taxi driver; they married, and in 1979, when Janis was 24, their son Alex was born. It was then that Janis began to experience strange symptoms. ‘I had tingling, tingling in the hands,’ she says. ‘I was referred to a neurologist.

When I went, it was always like, “Oh yes, Janis Winehouse; possibly MS”. It was always “possibly”.

The fun part was that I actually had a lumbar puncture. They said to me, “Whatever you do, don’t get up, don’t get out of bed”. I said, “OK”, and what did I do? I got up, of course. That headache stayed with me for the week.’

continues www.mssociety.org.uk MS Matters 103 11

PEOPLE The lumbar puncture proved nothing, however.

‘It sort of settled down,’ says Janis. ‘My GP, bless him, was saying to me, “No, no, no, it’s not MS. If it was, you’d be in a wheelchair.” Thank you.

So he described anti-depressants for me – postnatal. I thought, “OK”. So I got through that, got back to work, with my son, and I just got on with life.’

Five years later, in 1983, Amy was born and life went on. Janis worked as a pharmacy technician and then as a lab technician at her son’s school.

She laughs at the memory. ‘Bless him, he was like – it’s that thing, especially with teenage children – you see your mother, you just walk on, don’t say anything.’ She and Mitchell divorced; amicably, she says. Amid all this, she somehow found time to get an Open University degree and then to qualify as a pharmacist in her own right.

She tried to keep the possibility of having MS out of her mind. ‘I didn’t think about it because the moment I thought it might be MS, I felt terrible; I had the woe.

The family were aware that there was something wrong, but because I just got on with life, they did too.’

Nowadays, Janis lives in East Barnet, London, with her husband, Richard Collins, 61. They first met when they were both at the same youth club – Janis was 12 and Richard, 16, was her athletics coach. ‘We never lost touch,’ says Janis, ‘even after we both married different people. We were obviously meant to be together.’ They married last September, having been a couple for four years.

They are both retired. ‘When I stopped working,’ says Janis, ‘it took me a while to get over that because I missed it terribly.’

Being active is a major thing ... I can’t be anything else At this point in the interview, one of her two half-Burmese cats – given to her as kittens by Amy – creates a diversion by chasing its tail around the floor. ‘Oh, to be a cat!’ exclaims Janis.

Fast forward to 2001. Janis and her then partner went on holiday to Italy. ‘Before we went,’ she says, ‘I wasn’t feeling well. I thought it was a virus, maybe, so I’ll just go. I was dizzy, a feeling of nausea.’ One day, they went to Pompeii and, in the shadow of Vesuvius, Janis erupted: ‘I vomited at Pompeii.

I could not stand up, I was falling all over, unsteady, and being sick.

‘When I came back, I could not work; I couldn’t do anything. So I went to see my GP. He was like, “Hmm, well, it might be a virus”. It did settle, because I returned to work. I was a locum pharmacist, which I loved, and I would sometime drive 50 miles to one location just to do the day’s work, and the day’s work would be sometimes up to 10 hours.

But that’s what I did and I just worked through it.’

But then, in 2003, Janis found couldn’t carry on.

Feeling dizzy and unable to drive, she was taken to hospital by a friend. ‘I had the MRI then,’ Janis says, ‘and they said, “Ah, yes, we can see it – we can see lesions”. Finally, she was no longer a ‘possible’ but a ‘definite’. The diagnosis was, she says, a huge relief: ‘Everyone I know with MS says, “When we get the diagnosis, it’s like, oh good”. It’s the unknown that’s not good.’

12 MS Matters 103 www.mssociety.org.uk

Janis’s MS is now secondary progressive. Her right leg is badly affected, and she uses an FES (functional electrical stimulation) device – a small box attached to her waistband that sends electrical signals via thin wires to stimulate the lower-leg muscles – to help with walking. When out and about, she uses a stick. She takes cyclizine, when necessary, to combat dizziness, and oxybutinin for her overactive bladder. When we meet, she is due to go to for an injection of Botox into her bladder

PEOPLE What the MS Society is doing

– a treatment for incontinence developed with support from the MS Society. She is looking forward to it because, like many people with MS, she finds that ‘urgency’ – the need to dash to the toilet at a moment’s notice – ‘holds me back’.

FES Janis has tried several unproven treatments for Functional electrical stimulation (FES) devices of MS. She gave low-dose naltrexone (LDN) a go, the kind used by Janis Winehouse can help with but it did nothing for her. Janis also tried Esperanza, dropped foot and so improve walking. A neuroan unlicensed drug that has no clinical evidence in physiotherapist or other healthcare specialist will favour of its efficacy. It cost her more than £7,000, be able to assess whether FES would help you. but it made no difference to her symptoms. She You should be able to access FES on the NHS, has tried to get her money back, to no avail. ‘People no matter where in the country you live. However, should be very, very aware and not go for things some local health authorities have refused to fund that make promises without full medical backing,’ FES treatment. The MS Society has produced a says Richard. free guide, How to campaign for access to FES, Janis goes to the Walthamstow MS Therapy that will help you challenge any such decision.

Centre every week for yoga classes and See below for details of how to get hold of a copy. physiotherapy, and a physiotherapist visits her Botulinum toxin (‘Botox’) at home once a week. ‘It keeps her active,’ says Many people with MS experience bladder problems.

Richard. ‘Yes,’ ripostes Janis, ‘and “she” doesn’t An overactive bladder is common and can lead mind. Being active is a major thing. When I was to incontinence. A newly emerging, highly effective having my hair done for my TV appearance, the treatment involves injecting botulinum toxin hairdresser was saying to me, “Well, it’s good (sometimes called ‘Botox’) into between 20 and 30 that you’re keeping busy”, and I’m like, “Yeah. different sites in the bladder wall. Research, including And?” I can’t be anything else.’ work funded by the MS Society, has discovered What’s keeping Janis really busy at the moment that this therapy, which works by blocking muscle is the Amy Winehouse Foundation, the charity contractions in the bladder wall, can be very effective. that was set up in Amy’s memory ‘to support The treatment results in quite long-lasting charitable activities in both the UK and abroad benefits (generally up to around 10 months) during that provide help, support or care for young which urgency and urgency incontinence may be people, especially those who are in need by reason greatly reduced. of ill health, disability, financial disadvantage or Only people with MS who are willing to selfaddiction.’ Janis and Richard are Trustees, as catheterise can use it because it is likely to make is Mitchell. At the MS Society’s information and complete bladder emptying difficult. The treatment lifestyle event, MS Life, in Manchester in April, is minimally invasive and has few side-effects, Janis presented the Society with a cheque from but is not yet licensed. the Foundation for £20,000. ‘It was so important Ask your GP for a referral to a urologist to discuss it. to give something to the MS Society,’ says Richard, ‘because Janis’s health was always one of Amy’s Managing bladder problems (MS Essentials 07) prime concerns. Amy, and indeed Alex, were A free publication from the MS Society with advice on always, always concerned about Janis’s health.’ managing all the bladder problems experienced by Janis agrees. ‘I always worked, no matter what,’ people with MS. See below for details of how to she says; ‘even if I felt ill, I just kept on. But there get hold of a copy. was one occasion when I really didn’t feel well and I went home and my son was so nervous, he was like, “Oh mum, are you OK, are you OK?” It really The MS Society’s free information booklets, worried him.’ And that’s why she wants the donation such as those mentioned here, are available to be used both for research and for the support for download from the Society’s website at and recognition of children and young people who www.mssociety.org.uk or you can obtain copies care for a parent with MS. by calling the Info Team on 020 8438 0799 Janis Winehouse will keep on keeping on. It’s (Mon to Fri, 9am to 4pm). how she copes. Her father died in January, but she still manages to talk about what she has and not what she’s lost. ‘People talk to me To discuss in confidence any aspect of life with about losing Amy,’ she says. ‘I haven’t lost her.

MS, call the MS Helpline on 0808 800 8000 She’s still with me. She always will be.’

(Mon to Fri, 9am to 9pm; Sat, 10am to 1pm) or email helpline@mssociety.org.uk The Amy Winehouse Foundation website is at www.amywinehousefoundation.org www.mssociety.org.uk MS Matters 103 13

PEOPLE Selena

The importance of having ‘me time’ When your husband is one of your carers, you can worry about how it makes him feel. Selena and Jinx Jones, who live in Cardiff, talk to Anita Roberts about their life together.

What the MS Society is doing

14 MS Matters 103 www.mssociety.org.uk

‘Jinx and I got together when we were in our teens.

We separated, got married to other people. I had three children, Jinx had five. Then we got back together again about 12 years ago.

‘I worked for many years in marketing and PR and when I gave up due to my MS I worked as a magistrate for four years. My condition changed and the fatigue was a real problem. Then it got that I couldn’t write, so I stopped working.

‘Jinx also stopped working so that he could be around more. He built a recording studio in the garden. Music was always his hobby and when he stopped working the studio became his lair.

‘In the beginning, I had one carer at a time.

These days I have carers all day, every day, and in the mornings I have two people for three hours at the same time. MS is tough on the bowels and bladder, too, and I don’t want my husband to be involved with my bowel and bladder things. I want him to see me downstairs, looking lovely.

‘Things like my hair, make-up and nails are more important than ever, and the carers are now make-up artists and hair-stylists too. My appearance is important for my self-esteem, so that when people see me I look as I always have. I have always been like that. I have never wanted to be seen in my dressing gown.

‘Our home can often be a bit mad, so going out is important. Luckily, I was never a great walker so I don’t really miss going for long walks. I see someone every day; I have become a lady who lunches.

‘Over the last few years some things have changed drastically and my relationship with Jinx has changed, subtly. I look back at my old self, and think, “I’m disabled; he isn’t”. It frustrates me that he has taken on my disability. For example, I can’t walk on the beach; he can, but won’t, and says, “I wouldn’t want to go without you”. Whilst this is very lovely, I feel I’ve made him disabled.

‘My youngest child is now 18. He was 12 when two of my carers, Sandra and Jane, started and Mary, too, has been here a few years. They are like aunts to my children and have helped me to continue to be the mother I was before I got so disabled.’

Photograph supplied by Selena Jones

Research into the needs of male carers

The MS Society funded Prof Julia Addington-Hall to investigate the needs of men caring for people severely affected by MS. In the two-year project at the University of Southampton, her research team interviewed male carers to better understand their support needs. Based on this work, a survey was developed to gather the experiences of male carers across the UK. We hope to see the results of this ground-breaking research published later this year.

PEOPLE Jinx ‘Selena’s MS has changed my life. I have always been a musician, but it was difficult gigging and going to work and helping her too.

‘We were very busy and it took us a while to get used to the change in our life and life with carers.

Now the three girls who look after Selena are like family. We are very lucky that they are such nice people.

‘Our kids are older now, but it is still a busy household. I am a sociable person but I need my own time and my own space, so having a studio is a way of getting back a bit of my life.

‘It gets me down sometimes. I am not a good “morning person” and there might be three or four people around. It takes me a while to come round, and it’s a struggle for all involved, but they know me now, and they generally are quiet. I have trouble with my back so we rely on someone to get Selena up and dressed every day. It is getting to a point that I am struggling so much we have talked about somebody coming in the evenings to help her to bed, but neither of us are ready for this yet.

‘We miss not having a holiday. I know that there are all sorts of places that offer facilities for the disabled, but each holiday has been increasingly difficult as her condition has worsened. We have found a place in Spain where you can hire all the equipment that you need, and if we go there I think we will take a carer.

‘I don’t like to think I am “on duty” caring for Selena. That is awful. I don’t mind doing what I do.

We just get on with life. I think if you saw us you would think that we are fine. We don’t know what will happen next, but we will cope with it.

‘I recently wrote a song for Selena – it was prompted by us going to a friend’s wedding. She was concerned that people would look at us and feel sorry for me as she is now so disabled. We thought we could sell the song to use it in a positive way to raise funds for the MS Society.

‘Selena is a very positive person and we have a very good relationship. We talk a lot and everything is generally out in the open. Selena is not ever depressed, which makes my life easier. I think I am very lucky.’

The man’s guide to caring for someone with

multiple sclerosis is a free guide from the MS Society. Download from www.mssociety.org.uk or call 020 8438 0799 for a copy.

You can buy Jinx’s song for Selena, ‘Footsteps

Together’, at the iTunes store (itunes.apple.com) or follow the links from the MS Cymru Facebook page at www.facebook.com/msscymru

Carers Week 2012 runs from 18 to 24 June.

This year’s theme is ‘In Sickness and Health’ and the MS Society is playing a leading role. The MS Society is one of the event’s partners, alongside Carers UK, Age UK, Crossroads Care, Macmillan, Marie Curie, Parkinson’s and Princess Royal Trust for Carers. To find out more, visit www.carersweek.org or call 020 7378 4955. www.mssociety.org.uk MS Matters 103 15

PEOPLE

EVERYBODY NEEDS GOOD NEIGHBOURS

It’s so good to be able to help demystify MS for the general public 16 MS Matters 103 www.mssociety.org.uk

Susan Kennedy first appeared in TV soap Neighbours in 1994. In 2009, she became the longest-running female character in the series and has been played for all that time

by Jackie Woodburne, an Australian actress who was born in Northern Ireland. Jackie talks to Sarah Westlake about playing a character who, in 2007, was diagnosed with MS.

PEOPLE experiences and my research When she got the script saying that Susan Kennedy, the character that MS is different for everyone, so if my work has touched she plays in Australian TV soap Neighbours, was to be diagnosed anyone in any way then I’m really honoured.’ with MS, Jackie Woodburne To research the role, the had an unusual reaction. ‘It was producers put Jackie in touch with really strange,’ she says; ‘I had MS Australia (the MS Society this feeling that a really good of Australia).

‘They really helped friend of mine had been diagnosed me with my research,’ she says. with MS. I’ve been playing Susan ‘One of the volunteers there for a long time and I think of her actually ended up doing a as a friend. It actually upset me cameo appearance on the show for a little while. But then I had to meet the challenge as an actor.’ as someone who manages their condition well and just gets on Jackie had a little bit of with their life. Through them I’ve knowledge about MS before the role demanded that she knew met some extraordinary people a lot more. ‘I have a few close who live extraordinary lives.’ friends who are affected by MS,’ Susan Kennedy was a school teacher when she arrived in she says. ‘A very good friend of Ramsay Street, but is nowadays mine does, but she is luckily not particularly affected, and lives a high-powered newspaper editor.

Jackie talks about how Susan, almost symptom-free. I also had ignoring the advice of former a family member with MS who husband Karl (Alan Fletcher) was very severely affected and and under pressure from her tragically ended up taking her boss Paul (Stefan Dennis) is own life. So I had a real insight and could understand from these left exhausted by her job. ‘She’s working 24 hours a day to try to get the paper to take on a different form,’ says Jackie, ‘and is running herself into the ground.

She’s unable to stop the trembling in her hand, is quite dizzy and her vision becomes blurred – all indications of an MS relapse, which would be her worst nightmare.’

Jackie understands that working and having MS isn’t always easy.

‘If things are going well for people,’ she says, ‘if they are not being hampered at that moment by the condition, I can see how the temptation would be to just keep on going. They might not put any measures in place to ensure they stay fit and healthy in the long run’ Every time MS is talked about sensitively in something as far-reaching as a popular soap like Neighbours, it has a huge effect both on people with MS and the wider community. Facebook pages, talk forums and Twitter feeds are usually abuzz whenever an MS storyline is played out – often with outrage at how

People are really happy that we are addressing the issue

unrealistic it all is. The MS Society is often asked to consult on TV programmes and theatre productions when there are MS storylines.

‘It’s so good to be able to help demystify MS for the general public,’ says Jackie. Most people don’t know anything about the condition, and unless it affects them, why would they?’

Jackie helps raise awareness in other ways, too. ‘I’ve done the MS Australia Walk and Fun Run a few times,’ she says, ‘and that‘s been amazing. Whenever my schedule allows it, and if I can, I always try to do anything MS Australia ask me, I’m always really happy to help.’

And when she is out and about, and in the fan mail she receives, people are universally positive about her character and the way Jackie is portraying the onset and diagnosis of MS. ‘People are really happy that we are addressing the issue and that in doing so we are building awareness in the community,’ she says. ‘People feel able to talk to me about their experiences with MS, and that’s really touching.

I’ve really learned a lot, I’m more sensitive to things in the news about MS now. I keep track of the latest breakthroughs and am always so happy to hear when research looks like it’s getting somewhere.’

Neighbours is broadcast in the UK on Channel 5.

The MS Society has produced three short films that show what it’s like to live with the symptoms of MS. You can view them at www.msfightback.org.uk.

Please share them with your networks to raise awareness of MS. For more about the films and about the Society’s report, Fighting Back, launched recently during MS Week, which sets out to challenge public perceptions of MS, see pages 4 and 24

www.mssociety.org.uk MS Matters 103 17

SPEAK OUT

The ecstasy and the agony aunt It can sometimes feel as though there are three parties involved in all of your intimate relationships – you, the other person and your MS. But having MS may mean that you have to adapt and try new things, but it doesn’t mean you have to stop thinking of yourself as a sexual being.

MS Matters looks at what can be done if MS starts to interfere in your sex life, and our resident agony aunt, Hilary Freeman, gives some frank answers to some very personal questions.

If circumstances hadn’t forced us to develop our sexual relationship, we might never have discovered the depth and variety of feelings and experiences that are now part of our whole life, not just our sex life.

Joanne MS can affect your sexuality in three main ways: firstly, it can directly affect sexual functioning; secondly, other symptoms may indirectly cause some difficulties; and finally, MS can affect your mood, your desires and emotions.

MS and sexual functioning Sexual arousal, response and orgasm require messages to be sent between the brain and sexual organs, via the spinal cord. If there is MS-related nerve damage in the parts of the brain and spinal cord that are involved, this can have an effect on sexual function. This damage affects men and women differently.

18 MS Matters 103 www.mssociety.org.uk

Women Vaginal dryness can make sex painful or uncomfortable for a woman. It can be a result of MS, or it could be a side effect of certain medications such as anti-depressants. Menopause can also cause dryness. Liberal use of lubricants – there’s a wide variety on sale in your local pharmacist and online – can help. If you’re using condoms, then be sure to use a water-based lubricant. If you feel that your medication may be the cause of the problem, talk to your doctor.

Probably the main sexual concern for women with MS is a reduced ability to orgasm.

Since my last relapse, I find it impossible to orgasm. I just don’t have normal sensation anymore and all the usual foreplay ‘tricks’ don’t work. I still enjoy the intimacy of sex and want to do it, but my boyfriend is starting to avoid it. Will I ever get sexual pleasure again? Help!

Vicky, 34 iscovering that pressing the old buttons no longer leads to a climax can be one of the unexpected – and extremely upsetting – consequences of MS for many women. Unfortunately, scientists have not yet developed a simple orgasm pill for women. However, the brain is by far the biggest sex organ, which is why many women are able to climax in dreams, with no physical stimulation. This means that even if you experience altered or reduced sensation in your nether regions, it may still be possible to reach orgasm. It might just take longer, and feel slightly different.

Make it clear to your boyfriend that you’re still interested in sex and still enjoy sexual contact by talking to him about this and by being affectionate and tactile. Think back to when you were a teenager: do you remember how exciting a long, passionate kissing session could be? Why not re-live this?

You may have to be less spontaneous than before.

Set aside time for sex; diarise it if needs be. Sex therapists often use a technique in which couples spend an allocated time-slot simply stroking each other, progressing in stages to full intercourse over a period of weeks. This can take the pressure off and help to re-establish intimacy. If your time-slot arrives and you’re too fatigued, reschedule it.

You need to get to know your own body again, learning what sensations now feel pleasurable.

Communicate this knowledge to your boyfriend.

Don’t be afraid to experiment. Try different positions, different locations, even watching romantic/erotic films together. Discussing your sexual fantasies

D

SPEAK OUT his must be very distressing for you. About 70 per cent of men with MS have problems getting erections, which can be a direct result of damage to the nerve pathways in the brain or the spinal cord or a side effect of some medications.

But it’s worth remembering that you are not alone.

Nearly all men experience problems getting or keeping an erection at some point in their lives, with over 50 per cent of over-40s having erectile problems. There’s a lot of help out there.

Please make an appointment with your doctor to talk about this. It’s such a common issue that you really need not feel embarrassed. If the problem is caused by any medication you are taking, then it may be possible to try an alternative.

Your doctor may also be able to prescribe a drug such as Viagra, Levitra or Cialis, which work by increasing blood flow to the penis. Whatever you do, don’t buy medication online: you won’t know exactly what you’re getting (there are lots of dangerous fakes) and you need to know how to take it correctly to avoid side-effects. In addition, there are many manual devices, such as vacuum pumps, available, which your doctor can discuss with you.

T

can be a huge turn-on. Most people’s sex lives get stale if they don’t spice things up from time to time. Sex toys can be very helpful – particularly vibrators, which can provide intense stimulation.

Perhaps you and your boyfriend could go to a friendly high-street retailer and choose some together.

Or, if you’re too shy, there are several online outlets (and you’ll receive your goodies in discreet packaging).

You may not have exactly the same sex life as you did before MS, but it can be just as fulfilling.

Men For men with MS, the greatest sexual difficulty is likely to be an inability to get an erection. This may be as a direct result of nerve damage caused

by MS, though it is important to note that most men, whether or not they have MS, will experience erectile difficulties at some point, particularly as they get older.

There are medicines that can help. Drugs such as Viagra, Cialis and Levitra are taken as tablets and work by increasing the flow of blood to the penis. Prostaglandin, a man-made hormone that is administered by injection or by inserting a pellet into the tip of the penis, can also help, as can vacuum pumps. Before taking any drug, talk to your doctor to make sure that you take the right dose for you and to discuss any potential sideeffects or interactions with other medication you may be taking.

Men with MS may also notice difficulties with orgasm and ejaculation and may notice reduced sensation in their penis.

I’m still a young man but, thanks to my MS, I find I often can’t get an erection and, the more I worry about it, the more it happens. It’s really starting to affect my confidence and my relationship. My boyfriend is getting fed up and I’m worried he thinks I don’t fancy him any more.

Should I just give up on my sex life?

Mike, 36

The most important thing is to try to take the pressure off yourself. Once you’re aware you have a problem, it come become a vicious circle, as you’ve discovered. Stress and psychological issues can also cause erections to flag. If you’re worried that your boyfriend thinks you don’t fancy him any more, talk to him and make it clear this isn’t the case.

Don’t shut him out. It’s important to maintain your physical intimacy, so spend time kissing and touching each other, giving each other massages, etc. Experiment with sex toys, which can provide extra stimulation.

You and your boyfriend might find some sex therapy helpful too. Why not contact the College of Sexual and Relationship Therapists and see if there’s a local counsellor who can help you deal with this together. For more information about erectile problems and how to treat them, contact The Sexual Advice Association (see listings, page 23, for contact details).

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SPEAK OUT

The indirect effects of MS Some of the symptoms of MS can complicate the enjoyment of sex. Spasticity – cramps or spasms in the legs – and muscle weakness can make sexual activity difficult, for example. You may have to experiment with new positions. There are also numerous supports, slings and other pieces of ‘sex furniture’ on the market that are designed to help support you in a comfortable position during sexual activity.

If you take medication for spasticity, it may help to take it just before sexual activity, though it’s a good idea to discuss changes in your medication patterns with a doctor first. Massage can help relax the muscles – and it can also help create intimacy and closeness.

It’s more difficult physically, but not impossible. We’ve had to learn to adapt, just as with everything else.

Brian Sensory changes can have a big impact on sexual activity – it can be difficult to get ‘in the mood’ when even the lightest touch causes discomfort, or if you can’t feel any touch at all. And strange or painful sensations don’t have to be in the genital area to make being touched painful, irritating or uncomfortable.

There are medications that can help with these sensations, such as amitriptyline, carbamazepine (Tegretol), gabapentin and phenytoin (Epanutin).

Not all pain will be treatable, but as with other sexual problems in MS, some experimentation and good communication between partners should help too.

Many people with MS experience some changes in their concentration, thinking or memory. Sometimes people ‘drift away’ during sex, finding it hard to sustain interest. This can cause misunderstandings,

20 MS Matters 103 www.mssociety.org.uk

so it can help to talk this through with your partner so that they understand that this lack of concentration is a genuine symptom of MS. Together, you might find ways of compensating for it, such as avoiding potential distractions and creating a romantic mood and sensual environment.

Some people with MS experience bladder and bowel problems during intercourse. For some people, the thought of having an ‘accident’ during sexual activity – particularly with a new partner – can kill the mood, and may even cause them to shy away from intimate physical contact altogether.

If you have problems with urgency or continence, going to the toilet (or self-catheterising, if you do this) just before having sex can help. If you take any medications for bladder problems, taking them about 30 minutes before sex can minimise bladder contractions during sex. Finding positions which don’t put pressure on your bladder can also make a difference.

Fatigue can have an impact on libido, and you might feel you do not have the energy or strength for sexual activity. This can be misinterpreted by others – sometimes people say that their partners think they are no longer interested in sex. Being honest and discussing these feelings can help prevent misunderstandings from arising.

MS-related fatigue is typically treated with energy conservation strategies, task prioritisation, balancing rest and activity and, possibly, medication. If you are prescribed medications such as Symmetrel (drug name amantadine) or Provigil (modafinil), it may help to take them just before sexual activity.

However, taking these medications in the evening could make it difficult to get to sleep afterwards.

Remember to discuss any changes in medication patterns with your doctor first.

If there’s a time of day when your energy levels are higher – such as the morning – you might prefer to have sex then rather than in the evening.

Planning to rest before and after sex might help too. Why not experiment with alternative positions that are less tiring and require less muscle strain?

Mood and emotions MS can affect your emotions as well as your body, and people with MS are more likely to experience depression than the general population. If someone is feeling depressed, they may lose interest in sex or they may ‘close off’ from other people around them.

These emotional changes can be a reaction to the condition and a symptom of MS. It’s important that these emotional symptoms, like physical symptoms, are properly recognised and treated.

If it’s affecting your sex life and your relationship,

SPEAK OUT it can help to talk through your feelings with your partner.

It’s also important to remember that if you don’t feel in the mood, then it’s OK to say no. It might make it easier for them to understand why you may not be interested in sex if they know that depression and other mood changes can be a symptom of MS – and that it’s not about them.

Equally, talking to your partner about how you’re feeling could bring you closer together – which might help with intimacy.

Finally, it is important to note that changes in desire, performance and satisfaction can be a side-effect of some medications. For example, certain antidepressants, including fluoxetine (brand name Prozac) and sertraline (Lustral), can affect sexual function and cause problems such as decreased libido, delayed or absent orgasm and ejaculation, and menstrual irregularities.

If you think any of your medications might be affecting you sexually, speak to your doctor or MS nurse about how you can manage this. If you find it difficult to talk to them about sexual issues, there are some tips on ‘Talking to health care professionals about sexual issues’ in the MS Society booklet Sex, intimacy & relationships (see listings on page 22 for details of how to get hold of a copy) that you may find helpful.

I was diagnosed with MS last year. I’m starting to come to terms with it now but I’m really worried that it means I’ll never meet anybody again. Everyone else I know is fit and healthy and full of energy, so why would any guy want to go out with me when I’m fatigued and could have a relapse any time? And if I do start dating someone, how and when do I tell him I have MS? Gemma, 27

on’t write yourself off. While a diagnosis of MS is never likely to appear in anyone’s dating requirements alongside ‘GSOH’, it should not stop you meeting a partner or having happy, successful relationships. The majority of people with MS who want to be in a relationship are. Remember: you are not your MS. Yes, it’s part of the package now, but it doesn’t define you, or stop you having a lot to offer. Just as you say you’ve started to come to terms with your condition, so can other people.

Adaptation is the key. You can’t go out clubbing till 4am any more? Then get involved in other activities, where you’ll find like-minded people who share your interests. Don’t be afraid to try internet dating, which will allow you to get to know – and vet – people online before you meet.

There are no rules about when you should tell a new partner that you have MS – although the first date probably isn’t the time (unless your symptoms are obvious, and it can’t be avoided). Whatever you do, don’t lie. It will only set you up for future problems and make you seem untrustworthy.

Follow your instincts. As you get to know and like each other, it’s likely that the right opportunity will present itself naturally, in conversation. When you are ready to ‘come out’ about your MS, be guided by your partner’s questions, so you don’t give too much unnecessary information too soon. Give them time to get used to the idea.

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As my MS has progressed, my husband has started to have to do more and more for me. He says he doesn’t mind, but I feel it’s changed our relationship, particularly in the bedroom. How do I make sure he continues to see me as a sexy woman?

Sarah, 55 hen one partner takes on the role of ‘carer’, it can change the dynamics of a relationship and both partners can find it difficult to adapt to their new roles. It sounds like you feel that your husband now sees you as his ‘patient’, rather than his wife and lover, and, unsurprisingly, this is affecting your sex life.

It’s important to try to separate the caring side of your relationship from the romantic one. So, during the times when your husband is not actively caring for you, you need to remind each other why you fell in love and that you’re still sexual beings.

Think about the romantic things you did for each other early on your relationship – writing little notes, buying little gifts – and see if you can try

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SPEAK OUT to start doing some of these things again. Put on some music that you both like, suggest having a soak in the bath together (or bathing each other), or light some candles. If you’re able, try to make an effort with your clothes, hair and makeup, and even invest in some sexy lingerie.

Even if penetrative sex isn’t possible, make sure you spend time giving each other long, lingering looks and kissing and stroking each other. Hold hands while you’re watching TV. Focus on the things you can do, rather than apologising for those you can’t.

It’s worth finding out if you are entitled to external help. A paid carer could do some of the more personal caring tasks for you, which will take the pressure off your husband and your relationship.

Contact the MS Helpline to talk about this.

I’ve been married for 20 years and have just been diagnosed with MS. I’ve heard that the divorce rate in MS is higher than average and I’m petrified that my wife will leave me. How can I make things work?

John, 47 gnore statistics. A study of any group with a disability or condition would probably reach a similar conclusion. That said, we can’t give you a cast-iron guarantee that your MS won’t affect your marriage, or that your wife will be able to cope in the long term if your condition deteriorates. But do you know what? MS or no MS, that just makes you the same as everybody else in the world. All relationships face challenges in the long term. Healthy people have accidents or get sick, successful people lose their jobs, and even having kids changes the status quo.

If you have a strong, loving relationship, you will face the challenges together and overcome them.

The key is open, honest communication with your wife. You both need to be able to discuss your feelings and your needs and your fears and to tackle them together. Talk to her now and tell her about your anxieties. Ask her how she’s feeling.

It might be helpful for you both to contact the MS Helpline and to find out if there are any other local couples in a similar situation to you, whom you could talk to. The MS Society’s Message Boards or Facebook page could also be helpful. You might also like to think about contacting a counselling organisation, such as Relate (see listings, opposite), for some sessions with a counsellor who can help to facilitate a discussion in a safe, neutral environment.

Often, ignorance of the future is far more frightening than the reality. Take life each day at a time and try not to worry about might happen.

Deal with things together, as they occur.

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22 MS Matters 103 www.mssociety.org.uk

It’s good to talk MS Helpline Call 0808 800 8000 (Mon to Fri, 9am to 9pm; Sat, 10am to 1pm) or email helpline@mssociety.org.uk Online chat Talk to other people with MS via the MS Society website forums at www.mssociety.org.uk/forum or the Society’s Facebook page at www.facebook. com/MSSociety MS Society support groups The MS Society hosts a wide range of support groups. Mutual Support, for former and serving members of the armed forces, GLAMS, for lesbian, gay, bisexual and trans people, and Asian MS all have dedicated message boards at www.mssociety.org.uk/forum. Other groups include the Shane Project, for people of AfricanCaribbean descent, and Rishon and JEMS, both for Jewish people. There are also a number of groups for young people with MS. For contact details and to find out more, visit the Society website at www.mssociety.org.uk or call the Info Team on 020 8438 0799 (Mon to Fri, 9am to 4pm).

Shift.ms A social network run by its users, where young MSers meet, share experiences and support each other. http://shift.ms

Further reading Sex, intimacy & relationships (MS Essentials 12) is a free publication from the MS Society. It has recently been revised and updated and contains a wealth of information, tips and practical advice.

Download from www.mssociety.org.uk or call 020 8438 0799 for a copy.

The MS Society Library has a wide range of books on sex and relationships that can be borrowed. The library catalogue can be browsed online at www.mssociety.org.uk/library. Or call 020 8438 0799 or email librarian@mssociety. org.uk

SPEAK OUT Useful organisations Bladder and Bowel Foundation Helpline 0845 345 0156 www.bladderandbowelfoundation.org College of Sexual and Relationship Therapists 020 8543 2707 www.cosrt.org.uk FPA (Family Planning Association) Helpline 0845 122 8690 (Monday to Friday, 9am to 6pm) Helpline Northern Ireland 0845 122 8687 (Monday to Friday, 9am to 5pm) www.fpa.org.uk Lesbian and Gay Switchboard Helpline for lesbian, gay, bisexual and trans people in the UK. Call 0300 330 0630 (daily 10am to 11pm). You can also get email support or send an instant message via the website at www.llgs.org.uk.

The national switchboard can also put you in touch with the many local lesbian and gay switchboards around the country.

Outsiders A self-help group for people with physical and social disabilities. Runs the Sex and Disability Helpline (see below).

4S Leroy House, 435 Essex Road, London N1 3QP (send an SAE with your enquiry) 020 7354 8291 (Thursday 1pm-5pm, answer machine at other times) www.outsiders.org.uk Relate/Relate NI Advice, relationship counselling, sex therapy, support and more.

England and Wales 0300 100 1234 www.relate.org.uk Northern Ireland 028 9032 3454 www.relateni.org Relationships Scotland Provides similar service to Relate/Relate NI. 0845 119 2020 www.relationships-scotland.org.uk Sex and Disability Helpline BCM Box Lovely, London WC1N 3XX (send an SAE with your enquiry) 07074 993 527 (Monday to Friday, 11am-7pm) sexdis@outsiders.org.uk SMS 07770 994 985

Sexual Advice Association Suite 30, Emblem House, London Bridge Hospital, 27 Tooley Street, London SE1 2PR Helpline 020 7486 7262 www.sda.uk.net Sexual Health Clinics Also known as Genitourinary Medicine (GUM) clinics. They offer free testing and treatment for sexually transmitted infections. Most clinics also offer a sexual health counselling service, as well as providing information booklets and free condoms.

To find out where clinics are based: Visit the NHS Choices website at www.nhs.uk or call NHS Direct on 0845 46 47 (England) Visit www.nidirect.gov.uk/health-and-well-being.htm (Northern Ireland) Call NHS24 on 08454 242424 or visit www.nhs24.com (Scotland) Call NHS Direct Wales on 0845 46 47 or visit www.nhsdirect.wales.nhs.uk (Wales)

What the MS Society is doing Research into partners’ experience of MS

Part of an MS Society-funded study on adjustment to an MS diagnosis, led by Prof Rona Moss-Morris, explored the partners’ experience in the first years after diagnosis. From interviewing partners about their concerns and difficulties it was found that key themes were: being unsure of what the future might hold and feeling helpless and out of control.

Partners also felt that other people could not understand or support them, which led to a feeling of isolation.

Researching bowel function in MS

Dr Guiseppe Preziosi has been exploring how the nerves of the bowel are affected by MS. His team is hoping that the findings of their research will help to improve bowel management by adapting existing treatments so that they are more effective for people with MS. Researching nocturia in MS

Prof Marcus Drake is investigating a tablet treatment in people with progressive MS who experience nocturia – needing to get up in the night to visit the lavatory. As well as measuring whether night-time loo trips are curbed, the researchers will also see if quality of life is improved. Nocturia can be bothersome – both in terms of sleep and bed sharing. An effective treatment may make all the difference.

www.mssociety.org.uk MS Matters 103 23

YOUR SOCIETY That was the MS Week, that was

in West Lothian that really made the biggest visual impact for MS Week. Farmer Andrew Jack used animal-friendly paint to turn the flock bright orange.

MS Week at the beginning of May attracted considerable media interest and sparked a flurry of fundraising activities. Janis Winehouse, whose daughter Amy died last year, appeared on ITV’s Daybreak programme alongside the MS Society’s Director of Communication, Information and Education, Sue Farrington.

Janis (who is interviewed on pages 8 to 11 of this issue) talked about her experience of living with MS. She was also featured in the Sun On Sunday that week. Meanwhile, the Guardian newspaper included a special MS supplement. ITV News and ITV News Wales carried stories about MS Week, as did the Belfast Newsletter. MS activist George Pepper, founder of the Shift.ms website for young people with MS, was featured on the BBC News website and MS Society volunteer Kate Mitchell appeared on BBC Radio Devon.

The week kicked off with the launch of the Fightback campaign at www.msfightback.org.uk.

The site showcased three films – the Boxing Gloves Challenge, the Corset Challenge and the Wellies Challenge – that were specially commissioned to illustrate how MS symptoms can feel. The films ranked as the numbers nine, 11 and 13 most-viewed videos on YouTube (non-profits) over the week.

MS Week is when our annual Cake Break fundraising event really kicks off. True to form, this year saw many a cake baked and pot of tea brewed and collection box filled.

In Scotland, two ‘flashmobs’ made a splash. In The Centre, Livingston’s shopping mall, 35 students of the traditional Korean martial arts emerged from the crowd to put on a display of their skills. And in the Bon Accord and St Nicholas Centre in Aberdeen, shoppers were treated to a performance by a local Jazzercise group, all clad in orange MS Society t-shirts. But perhaps it was a flock of sheep

You can read more about MS Week at http:// storify.com/mssocietyuk/ms-week-2012. There are links there to the three films about MS symptoms and to videos of the two flashmobs in action.

24 MS Matters 103 www.mssociety.org.uk

All MS Life was there MS Life, the MS Society’s information and lifestyle event, was held in Manchester over the second weekend in April . And what a weekend it was!

Nearly 4,000 people braved the rain and came along to take part in a huge range of activities. There were live cookery and exercise demonstrations, informative and interactive workshops, exhibition stands and a club night. The MS Spa offered free pampering for visitors and a six-kilometre ‘Wheel & Walk’ through the streets of Manchester raised funds for the Society. There was even a chance to sample ‘laughter yoga’.

It was great, being part of a collective tide of people who live an MS life – whether as a PWMS or carer/family member or professionally. It puts an individual daily succession of little battles against the disease into perspective and reminds you that you are surrounded by allies who are fighting the war against MS. I am not alone.

Janis Winehouse presented the Society with a cheque for £20,000 from the Amy Winehouse Foundation, the charity that was set up in memory of her daughter. She also recorded a short video that can be viewed on You Tube at www.youtube. com/user/mssociety, along with several videos about MS Life.

YOUR SOCIETY Having the chance to speak to people who know about or who have MS was a very valuable experience. It certainly helped me to realise that my son can live a happy and long life with this condition where before I felt devastated by his diagnosis. I would like to thank everyone who organises MS Life for the support I received.

The research talks were a major draw at MS Life, bringing people together to hear the latest from world-class researchers committed to beating MS. Experts delved into a range of hot topics, from disease-modifying drugs to stem cells and the immune system.

The ‘Meet the Experts’ was great, and I cannot express how wonderful it was to hear the research talks and to realise that such wonderful work is being done.

The talk on myelin repair pulled in arguably the biggest crowd. Professors Robin Franklin and Charles ffrench-Constant gave an overview of the latest developments in their work to uncover a myelin repair therapy.

The MS Society has committed £2.1 million to the next five years of the world-class project at the Cambridge Centre for Myelin Repair. The team, led by Robin, is planning a small clinical trial in a couple of years. The work could mean that a myelin repair therapy that could stop or even reverse the damage caused by MS could be a reality in 10 to 15 years’ time.

Listening to researchers speak about their work, breakthroughs and challenges, I never cease to be amazed at the efforts they go to on our behalf and their determination to find effective therapies for us.

David Ford from the MS Register team at Swansea University explained how people really can change the face of MS research by joining the MS Register.

Since its launch last year, almost 9,000 people have joined up.

The MS Register will build a rich picture of what it’s like to live with MS. The findings will be used to fuel campaigns for fair policy and improved healthcare for MS. It could also revolutionise the focus of research. Sign up now at www.ukmsregister.org Thank you for organising such a fantastic event. The MS Society helpers on the day were great, everyone so friendly and helpful. I was also really fortunate to get a grant from the MS Society to help with accommodation and travel – thank you so much for this. I don’t know how I would have managed otherwise.

You can watch the research talks and see all the

films we made, talking to people across the event, at www.mssociety.org.uk This event would not have been possible without

the extraordinary support from Visit Manchester and the amazing generosity of our title sponsors:

MS Society AGM At the beginning of August, all MS Society members who are fully paid-up on 16 June will receive an AGM booklet with information about how to vote on resolutions and in elections for trustees and nation council members. Online and postal voting opens at the beginning of August.

Look out for your AGM booklet and use your vote to influence the work of MS Society.

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YOUR SOCIETY What are you talking about?

has made it clear that she doesn’t want to learn anything about it. Her son has been bunking off school and is getting into trouble.

The MS Helpline takes over 13,000 enquiries a year, or more than 1,000 a month. This is a small selection of some of the calls we took in April.

We gave the caller space and time to talk. She was very tearful as she explained her situation. We listened to her distress and empathised with her.

We discussed the possibility of counselling for the caller and the option of family therapy, which her GP may be able to help with. We also told her about www.youngms.org.uk, a website aimed at children and teenagers, and looked to see if there is a ‘family focus’ day coming up in her area – a day organised by a local branch that gives families a chance to talk about how MS affects all of them.

Emotional support A lady in her 40s who has recently been diagnosed with MS telephoned. She explained that she is on the waiting list for counselling provided from her GP. She was finding it very difficult to cope and was very tearful. Her relationship with her family has started to break down and she is arguing with her husband most of the time.

We gave the caller space to explore the feelings that she’s experiencing and offered to support her while she is waiting for the counselling to start.

Sometimes just being able to voice your fears and worries can help you feel better. We suggested she may want to contact Relate to discuss the situation between herself and her husband. We recommended ‘Living with the effects of MS’, an MS Society publication that deals with emotions and feelings.

Employment We heard from an employer of someone with MS. We discussed the support the employee might need and outlined their rights under the Equality Act. We offered to send the employer the MS Society publication ‘Work and MS’ and encouraged them to keep in touch. We also told them about www.yourworkhealth.com, as it has sections for employers and employees.

Local support Benefits A woman called to talk about her recent diagnosis and wanted to know what benefits she may be entitled to.

We explored how she is feeling about her diagnosis and explained that benefits are awarded according to how someone’s MS affects them. A diagnosis is not an automatic entitlement to benefits. We told her about our publications ‘Benefits and MS’ and ‘Claiming Disability Living Allowance (DLA)’.

We also directed her to the charity Turn 2 Us, which provides free and confidential information given by trained professional advisers on welfare benefits. Their helpline number is 0808 802 2000 and their web address is www.turn2us.org.uk

Family and relationships A woman called us very upset because her partner will not discuss her MS with her. She was diagnosed five months ago and feels completely unsupported by her family. She was looking for emotional support as she feels no one understands her or her MS. She feels that her family is falling apart. Her teenage daughter accuses her of being lazy, has no concept of how MS affects people and

26 MS Matters 103 www.mssociety.org.uk

A man called who was feeling very isolated and felt that no one understands his recently diagnosed MS. He didn’t know anyone else with the condition and wondered what sources of support there are near where he lives.

We gave him details of his local MS Society branch and therapy centre. He does not have access to the internet and has trouble writing so we printed off all the relevant details, including the name and phone number of the local support officer, and sent them to him.

The MS Society’s free information booklets, such as those mentioned here, are available for download from the Society’s website at www.mssociety.org.uk or you can obtain copies by calling the Info Team on 020 8438 0799 (Mon to Fri, 9am to 4pm).

To discuss in confidence any aspect of life with MS, call the MS Helpline on 0808 800 8000 (Mon to Fri, 9am to 9pm; Sat, 10am to 1pm) or email helpline@mssociety.org.uk

CAMPAIGNS

The disability benefits rollercoaster For some people, claiming Employment Support Allowance has been like a game of snakes and ladders – one moment you are up, the next back to square one. Anthony Stone follows the twists and turns of one man’s story.

Philip Burton was expecting the bad news. Even so, when the envelope from the Department of Work and Pensions landed on his doormat it didn’t make it any easier. In bald, bureaucratic black-and-white he was informed that his Employment and Support Allowance (ESA) payments of about £95 a week would end. There was no advice about what to do next.

The letter was a result of complicated changes introduced by the Welfare Reform Act, which recently became law. From now on, only the most seriously disabled ESA-claimants (those in the ‘support group’) and those on lower incomes (recipients of income-based ESA) can receive more than 52-weeks’ worth of benefit. People in the ‘workrelated activity group’ (WRAG) of ESA claimants who receive contribution-based ESA will find their payments stop after a year.

Philip sums up the situation succinctly. ‘I think the system stinks,’ he says. ‘On the one hand, they recognise your plight, but on the other, don’t offer you any help. It is so unjust.’

To look at Philip you would not think there was anything wrong with him. ‘I am 57 and a widower these past six years,’ he says, speaking from his home in a small village outside Lincoln. ‘Although I have secondary progressive MS with all the trappings, I go around with a smile on my face.

‘The weather affects me, particularly when it’s cold. My muscles seize up and it’s difficult to leave the house. The pain and discomfort mean it’s not worth the effort. I take the maximum dosage of the muscle relaxant, baclofen. But the cold weather counteracts the drug and affects my mobility. At one point, I only went out the front door just once in six weeks.’

28 MS Matters 103 www.mssociety.org.uk

Things weren’t always this way. Philip was in work for 33 years before being made redundant from his job in field sales. That was in September 2008 and he has been unemployed since.

During this time, his condition deteriorated and turned secondary progressive. He looked for work at the job centre before his doctor gave him a sick note and some well-intentioned advice: ‘You know, Philip, you are not going to get any better.’

In the spring of 2009, Philip went for the medical to be assessed for ESA. It was carried out by the private healthcare company, Atos. One of the questions was: could he raise his hands over his head? Another asked if he could lift a jug of water and move a box.

‘Well, I ask you, what does that prove?’ he says.

‘They do not take into account if you’re having a good or a bad day. I think it is pathetic.’

Philip’s application for work-related activity group ESA was refused. He describes the accompanying report as ‘a travesty of justice’.

‘I live alone but I am not without friends and support. With the help of my local MS Society branch and the Citizens Advice Bureau, I made an appeal. I have no idea how you would cope if you were really on your own.’

Philip’s appeal was successful and the payments were back-dated. About a year later, he was asked to another medical. Before this one was halfway through, the doctor, who had been doing assessments for 29 years, said he’d seen enough.

Shortly after, Philip received a letter extending his entitlement to the work-related activity group.

And that’s the way it was until the letter arrived saying the benefit would stop at the end of April 2012.

CAMPAIGNS What is Employment and Support Allowance (ESA)?

ESA replaced Incapacity Benefit as the benefit paid to people who are not currently able to work due to their illness or disability. Most claimants are required to undergo a medical assessment called a Work Capability Assessment (WCA), where people are given points against a set of ‘descriptors’, according to whether they are able to do functional tasks. You need to score 15 points to qualify for the benefit.

If you qualify for ESA, you’ll be put into one of two groups: the Support Group, for those considered to be too

ill or disabled to be able to work – they will not be expected to look for a job. the Work-Related Activity Group (WRAG), for those

‘For years I have had to jump through hoops, and those hoops keep getting smaller and smaller.

I accept, and my grown-up son and daughter also, that I will never work again. That is a fact and yet the government is trying to hammer me because they have cut funding.’

The decision was deeply wounding. For over three decades Philip paid tax and National Insurance contributions, yet the decision made him feel like he was not entitled: ‘I know I am faring better than many people with MS, but I still think I have a valid case.’

At an age when Philip should be looking forward with hope to his golden years he was suddenly facing a precarious financial future. He has recently been diagnosed with anxiety and depression.

But Philip was not giving up without a fight. He now applied for a reassessment to see if he would qualify for the support group, which sets a higher bar, and is designed for those who are unlikely to be able to return to work at all.

At last, there was some good news. One week after being told his ESA payments would stop, Philip received another letter. ‘It said I have been moved from the work-related activity group to the support group, back-dated two weeks. It is what I was looking for – good news.’

So Philip’s story has a happy ending – for now.

Just when feels he is getting to grips with these latest ‘hoops’, another change is on the horizon.

Next year, he says, he can look forward to the introduction of Universal Credits and the introduction of Personal Independence Payments, which replace DLA. He can’t wait.

who, with support, may be able to prepare to return to work in the future – they will be expected to undertake activities related to finding a job.

What is contribution-based ESA? Contribution-based ESA is paid when a person has paid sufficient National Insurance contributions during their working life.

What is income-based ESA? Eligibility for income-based ESA is determined by the level of income, capital and savings a person has and their eligibility for other benefits. Usually, people on no or low incomes and with capital of less than £16,000 will qualify.

What is the ESA time-limit?

If you receive contribution-based ESA and are in the work-related activity group (WRAG), your contribution-based ESA payments will stop after 52 weeks. You might be able to claim another type of ESA instead. But, depending on your circumstances, this payment might be less than you get at the moment. If you are in the ESA support group, or you get only income-related ESA, this change does not affect you.

This affects me – what can I do?

If you have already had a letter from the DWP about this, you should contact them using the details they have supplied. If not, then you don’t need to do anything immediately, but you may choose to do so.

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CAMPAIGNS There are several possible outcomes if your ESA is time-limited: Move to the support group If you feel you should be in the support group (if your MS affects you more now than when you were assessed, or if you think you were put in the wrong group to start with), you can ask to be re-assessed by contacting the office that normally deals with your benefit. However, a re-assessment might conclude you are not eligible for ESA at all, and this could affect current payments as well as future ESA claims. Contact a local advice agency for support in making this decision.

Move to income-related ESA If you currently get only contribution-based ESA, you can be assessed for income-related ESA instead. How much you get depends on your financial circumstances – a ‘means test’. This might happen automatically or you can ask for it.

Continue with income-related ESA If you currently get a combination of contributionbased and income-related ESA, you can continue to get the income-related ESA payments. These should be increased once your contributory ESA is terminated.

If your MS gets worse after the time-limit Even if your contribution-based ESA is stopped because of time limiting, if your health gets worse later on and you begin to qualify for the support group, you can re-claim ESA. However, this can only happen if you have continued to have (or can be treated as having) limited capability for work in the intervening time. You would usually need to request a re-assessment to be considered for the Support Group.

To find your local Citizens Advice Bureau: visit www.citizensadvice.org.uk (England and Wales), www.citizensadvice.co.uk (Northern Ireland) or www.cas.org.uk, or call 08444 111 444 (England), 0131 550 1000 (Scotland) or 08444 77 20 20 (Wales) or look in your local phone book.

What the MS Society is doing We oppose the time-limit

We estimate it will affect around 8,000 people with MS, and we are extremely concerned about the impact that this measure will have on them.

Find out more about our campaign and get involved by visiting www.mssociety.org.uk/ benefitscampaign. If you’re been affected, please tell us your story by visiting www.surveymonkey. com/s/msstories or calling our Policy and Campaigns team on 020 8438 0700.

Helping people return to work

We have funded research to explore ways to support people with MS to return to work. The study aims to build on previous research that developed a service to help people with MS remain in work. About 20 to 30 per cent of people with MS are working – but many more could be if they had more support. Dr Playford’s team have developed a manual to help employers to support their employees make adjustments to remain in work, as well as helping people return to work after a considerable absence.

MS Society publications

Employment and Support Allowance (ESA) (MS Essentials 29) and the Working yet worried toolkit are free booklets from the MS Society.

Download from www.mssociety.org.uk or call 020 8438 0799 for a copy.

Information talks and events

In the coming months, the MS Society will be holding information events and talks on ESA around the country. Check the ‘Near me’ section at www.mssociety.org.uk or call 020 8438 0799 for details.

Free legal advice

If you have a problem with your benefits and live in England and Wales, contact the MS Legal Officer at the Disability Law Service for free legal advice.

Call 020 7791 9826, email msadvice@dls.org.uk or visit www.dls.org.uk

To discuss in confidence any aspect of life with MS, call the MS Helpline on 0808 800 8000 (Mon to Fri, 9am to 9pm; Sat, 10am to 1pm) or email helpline@mssociety.org.uk

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