Foyle Branch Members' Page
Congratulations to Peter on his election as Chairperson of the interim NI Council. The establishment of the Council was approved by the UK Trustees at its meeting in Belfast in December. Because of the additional commitment, Peter did not stand for Chairperson of the local branch this year, but he was elected to the committee.
A picture gallery of all the Council Members can be downloaded from the NI MS website at this link.
Foyle Branch Listening Ear Service Becomes Full Counselling Service
This new confidential service complies with best practice as prescribed by the British Association of Counselling and Psychotherapy and has been set up to help those who have been diagnosed with MS, their carers and family members affected by the diagnosis. If you feel you need to talk to someone who will listen without judgement and help you express and communicate your needs, please telephone 71360831 to arrange an appointment with the Foyle Branch Counselling Service. Download detailed information in PDF format here.
- Damian's Poem (Posted: 2 Sept 2010)
- Mark's Story (P0sted: 2 Sept 2010)
- Catherine's Story (Posted: 4 May 2010)
- Blaithin's Story - in her trade mark irreverent style (Posted: 30 Oct 2009)
- Etna's Appreciation of Eimer presented at AGM Posted: 02/06/2009
- Physiotherapy Thanks to Eimear's Family Contacts. Posted: 02/06/2009
- Eimer Cunningham: An Appreciation Posted:24/04/2009
- My Story - a poem by Naomi Posted: 18/02/2008
- Naomi's Story - I've done a sky-dive & I want to learn to drive a lorry Recent - 27/07/2006
- Declan's Story - I found out by accident Recent - 19/07/2006
- Cliona's MS Story - I have MS...MS doesn't have me! Posted; 04/06/2006 Updated: 13/01/2007
- Shauna's Story - MS for 13 of my 23 years Recent - 12/01/2006
- Eimer's Story - Living with MS 13/04/2005
- Margaret Irwin's Paintings
- Moira's Story - Still Smiling
- Heather's Poem
- Branch Library
- Invitation to submit your story for this page
- Spring/Summer 2008 Newsletter New - 07/05/2008
- Winter 2007 Newsletter
- Spring/Summer 2007 Newsletter
- December 2006 Newsletter
- Spring/Summer 2006 Newsletter"
- Autumn 2005 Newsletter
- Spring/Summer 2005 Newsletter
- Winter 2004 Newsletter
- Summer 2004 Newsletter
- Spring 2004 Newsletter
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Damian's Poem
Same
Let us walk
by the river, hand in hand,
Or by the sea
with golden sand,
Go to a mountain top
and shout our names,
Or see the wheelchair
and know, I love you
just the same.Damian Begley from Limavady
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Mark's Story
Mark Gamble's story was written by Emma Stewart and first published in the North Down & Ards branch newsletter
"I always say I have MS - it doesn't have me"
Diagnosed with MS three and a half years ago, Donemana man Mark Gamble begged his mother to take him to the Foyle Bridge - "I thought it was the end of the world - there was no way I was going to go through this". Now bursting with positivity and kind words for those who have given support over a difficult few years, Mark believes he is a better, happier and more fulfilled person today than he ever was before.
"People say that your health is your wealth, but it's only now you realise it."
Having had 13 relapses in one year, until August 2008 when he changed medication, the Tyrone man firmly believes in the power of positivity.
"I always say I have MS - it doesn't have me". Formerly a cross-channel HGV driver, Mark's symptoms began with numbness in his left leg and pins and needles in his hands, until within a matter of months he was struggling to speak or swallow and was "completely paralysed" from the chest down.
"Every time I had a relapse it took me completely off my feet, and I never really got a remission between relapses. I maybe got slightly better but that was about it."
Only leaving the house for hospital appointments, Mark's weight ballooned to 23 stone following steroid treatment. His last relapse, which inhibited his ability to swallow, kick-started weight loss. Feeling the benefits of shedding a few pounds and a change of medication, Mark took the plunge and got involved in yoga and physiotherapy classes through Foyle branch of the MS Society. "I was offered classes from when I was diagnosed, but I was scared of what I would see and what state people would be in." Full of heartfelt praise for Foyle branch's Development Officer, Terry McNamee, Mark's mother Jacqueline says that without the support of the society they "wouldn't get anywhere".
"I went on a course on managing your own health a couple of months ago, and they gave me a 12-week, one-to-one course with a personal trainer. That really gave me confidence back and when the course finished I signed up to a gym in Derry . It was too daunting before but not now. "The MS Society can't do enough for you - I don't know what I'd have done without Terry's help and support. I'd have never dealt with it all - it was just too much to take in and to accept. He's always thinking and organising - he's brilliant."
Believing that he is now a "better person", Mark says that it took MS to make him "wise up" and appreciate what he has. "It's great the way things have worked out. Thinking back two years ago I could never have imagined things would be this good. "It's made me thankful for what I have. It's a real thrill just to get out of your bed and live each day."
Having been the subject of many ward rounds when student doctors at Altnagelvin Hospital were grilled on his condition, Mark is delighted to be able to continue to help with the education process. "There would have been seven or eight of them round my bed, and I heard everything and learned so much from listening to them talking about me. "About six months ago they said I was too well to do it, would you believe, but they've now come back and asked me to start it again because I'm good at talking to the students."
Looking forward to whatever the future brings, Mark says that believing that things can get better is the only way that they will: "When I was in a wheelchair I looked up at the hospital Chaplain, Canon David Ferry, and said 'I won't always be in this'. That's the way I felt - things were going to get better and I wasn't going to lie down and give up. I believe that - and the right medication - is what's pulled me through."
Concerned that there is insufficient education on his condition, Mark was only too delighted to speak to a local youth club at the invitation of Canon Ferry, who has himself been a source of endless support. "That was a great experience. I was able to give the young people involved some insight into MS and the response has been great. Since then I've met some of them in town and they've come over for a chat and even to offer help. A bit of education makes a big difference."
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Catherine's Story
It's a startling statistic but Multiple Sclerosis (MS) affects around 100,000 people in the UK. And I happen to be one of them.
Diagnosed last April, it felt at the time as though my world had been turned upside down. Although I had been feeling under the weather, I put the tiredness, headaches and sporadic collapses down to a hectic lifestyle and burning the candle at both ends. Looking back I wonder how I ever believed that could be the case but I have a tendency to stick my head in the sand sometimes. Considering this time it concerned my health, ignoring the problem was not the way forward. In the time since, I have read up on the symptoms, treatments and information available both at the local MS Society Foyle branch, and on-line. Now I am a walking encyclopedia when it comes to MS.
This week is MS Awareness Week (26/04/2010). It aims to educate people on the impact the condition has on patients and also to raise a few pound for the MS Society charity. As such, I have spent the last week home baking a stack of cakes for consumption at a 'Cake Break' at work, all in the hope that I manage to raise a decent amount for the charity. They have been absolutely brilliant over the last twelve months. Locally, the Foyle representative, Terry McNamee, has been a fantastic source of knowledge and support, and some of the money the branch raises goes towards funding a local MS nurse who is quite simply, brilliant and nationally I have made use of the concise information available from the extremely well put together charity website - www.mssociety.org.uk.
And now I'm also writing this (originally published in The Derry Journal) ... in a bid to get across the education side of things for those readers not familiar with what MS is and what it means for people like me. I don't aim to be an expert, and the crux of it is that when it comes to people with MS, no two are the same.
Like many people, the first thing I thought when I heard MS was, 'I'm going to end up in a wheelchair'. Yes, that can be the case for some people but I've been finding that it's more of an exception rather than the rule.
If anything, having MS is a silent sort of condition. Well, that's been my experience anyway. If I had a pound for every person who said, 'You're looking fantastic', I would be a millionaire. While their sentiments are lovely, and certainly not to be scoffed at, if truth be told it can sometimes be a tad frustrating. It may be the case that I'm actually having a bad day, feeling excessively tired, suffering from pins and needles in my feet and/or running to the bathroom every ten minutes.
I've felt a few people stare when I've parked in a disabled bay, with my badge there for everyone to see, and watched me walk away with nothing seemingly the matter with me. Yet it is often the case that that trip to the shops may just have taken all of my energy to get there. Being able to park closer to the place I'm going to means I'm able to be independent, and when my feet are particularly painful, that can be the difference between an isolated week at home or a chance to get out for half an hour. For the majority of the time however everyone has been fantastically supportive. My family and friends are my backbone and my work colleagues couldn't be more understanding. That level of support cannot be underestimated.
My approach is also very positive. I live every day as it comes and try not to worry about what's around the corner because MS is unpredictable in its nature. I've also got a new perspective in life - I worry less about the little things and appreciate what I have more - and that can only be a good thing. While the last twelve months haven't always been easy, I'm pleased to say that the good times have definitely outweighed the bad. Last month I married my soul mate in a very moving and emotional wedding service and we are looking forward to a long and happy married life together. Before my diagnosis we had a whole host of plans for our life together and, to be honest, they're still in place - we've just tweaked them slightly!
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Blaithin's Story - in her trade mark irreverent style
Hi! My name is Blaithin and I have MS. I wasn’t sure how to start so I felt the best thing to do was to be honest and get straight to the point, which doesn’t normally happen as you will see! So, happy reading!
I will begin by telling you my name is pronounced BLAW-HEEN and is the Irish for little flower, but you can call me Bee, as that is what I got called at university, so I hope we can become friends and you can call me ‘Bee’. I even promise not to sting! I am going to mention multiple sclerosis as MS throughout as it is easier to say and spell too.
I want you to know that I am 33 and have been diagnosed with MS for four years. I think I am the lucky one out of my family, as I don’t remember the first time I became ill, which is good. It is from reading letters and a diary that my family kept when I was first in hospital that reminds me of how far I have come since I was first diagnosed. Apparently I rang in sick to work and they thought it was probably stress as I was up for promotion and was due to take over from my boss who was taking early retirement. I am a trained social worker, but will never be working in that field again as I was given a social worker when I was in hospital, so I can’t act as one on behalf of anyone now. I have accepted that and I now say I will just have to accept ‘working the social’, (sorry bad joke).
MS has affected my memory, and I always say, the funny thing is I always remember I had a good memory. My doctor always tells me to test it, so I try and remember jokes or things from the news to chat to my doctor about, but he still hasn’t given me anything for my sick sense of humour, (sorry another bad joke, but if you can suggest anything feel free to let me know!)
Well, my diary that the family kept – said that I didn’t even recognise them when they came to visit me in hospital as I was just tired all the time because of the amount of medication I was on. I was in hospital for eight months at first and was not eating or drinking, so I was being fed through a drip. (Sorry – just to let you know another bad joke coming up!) Due to being fed by drip and hospital food, I lost a lot of weight and even my boobs went down in size so, I always say it is amazing what you can get on the NHS these days – as I got a tummy tuck and a boob job for free! There weren’t even any scars to try and hide.
I have since, even through all the trauma at the very start of my diagnosis, tried to be very positive every day about my MS, as MS doesn’t have me, I have MS and I’m going to fight it and win! So, MS - watch out!
I am currently on eight tablets a day and my beta-interferon (rebif) injections, three times a week. I do feel it has worked brilliantly, though can leave a few bruises where the injection goes in – but I can live with that.
The MS branch in Derry has been very good at keeping me in touch with other people who have MS. We meet up during the week for yoga, physio and a chat. This is always good craic, as like most we don’t get out too much because of tiredness, not being able to drink and feeling that I would just have people watching out for me and I don’t want to spoil their enjoyment. I have been told by many that I don’t (spoil their enjoyment) and to just enjoy myself and it is ok if I want to go home early – just let them know and they will make sure I get home safely. Aren't friends and family brilliant - when you need them, but sometimes they are there when you don’t – and you can’t get up to any mischief – not that I would!
Due to the mobility aspect of MS, which thankfully at present isn’t affecting me too badly so people can run but not hide! I hope you don’t think that I am so lucky with my MS as it is not affecting me too bad at present as I can still ‘walk the walk and talk the talk’ which I am very grateful for but think of the poor sods who know only too well that I can talk the talk!
All I want for everyone affected by MS is to know that we are going to beat it and hopefully they/others won’t get it in the future. Everyone I meet seems to know someone affected by MS and I always say – the things people do to keep up with me these days, though I wouldn’t recommend it!
Take care,
love and laughter always.
Your friend,
Bee.
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An Appreciation of Eimer presented by Etna at 2009 AGM
I can't let this day pass without paying tribute to Eimear Cunningham who passed away on the 13th February this year. She was an active member of our Foyle branch for many years and I personally lost a great friend and I miss her dearly.
Her other half Terry, our development officer does so much for our Branch, and we'd like to thank him for all his hard work and to let him know we are here to support him through this tough time. Eimear's family are also very active within the branch and we'd like to thank them for all their support as it is greatly appreciated and on behalf of all the members we offer our sincere condolences to them on their sudden loss of dear Eimear.
As Louise already explained we receive physiotherapy on a weekly basis because of Eimear and her family contacts, for which we are so grateful and I know it has helped so many people in the branch.
So on behalf of all our members I'd like to say God rest your soul Eimear. You will never be forgotten.
Thank-you
Etna Bradley
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Physiotherapy Thanks to Eimer's Family Contacts
Etna mentions in her appreciation above that Eimer and her family were instrumental
in securing the provision of physiotherapy for branch members.Eimer Cunningham: An Appreciation
News of Eimer's death on 13 February 2009 at the young age of 42 was received with great
sadness by her large circle of friends within the MS community in Foyle. The following
appreciation was published anonymously in The Derry Journal shortly after her death.
It was written by her close friend Garbhan Downey and is reproduced here with his
permission.Those of us at the back of the large crowd at the city cemetary couldn't hear the music at first. We'd seen Eimer's cousin carrying a portable CD player towards the graveside but weren't sure to what end.Then after about thirty seconds of almost total silence, the music slowly began to drift up the hill and the stragglers, as one, caught their breath.
It was Shane McGowan who, along with the Beatles, Van Morrison and Loretta Lynn, was a mainstay of Eimer's pantheon - and he was singing for a pair of brown eyes. Just like Eimer's.
Eimer died on February 13, aged 42, twelve years after developing ms the relentless Primary Progressive variety, which gradually robbed her of the power of her legs, arms and much of her sight. She knew from an early stage there would be no West Wing style remission, no respite and no recovery but she accepted it with uncomplaining grace and typical good humour.
Her death, despite her lengthy illness, came as a shock to many of her friends. And Eimer had the gift of retaining friends - whether they were school friends from Thornhill College; friends from Clarence Avenue, from where she presided over the inner-city social scene in the early 1980s; friends from the Carrick Gaeltacht, her father's homeland, where she returned each summer to study Irish; friends from the Gweedore Bar, which her family ran for generations; university friends from Wales, where she was a prominent Labour activist; friends from New York, where she helped run a number of bar-restaurants; friends from the voluntary and health sector in Derry, where she worked on her return from the States; or, of course, her friends from the Foyle MS Society, who were a tremendous support to her in recent years.
Hundreds of these friends, some of whom hadn't seen Eimer in twenty years, packed into St Eugene's Cathedral, the Sunday after she died, to remember her. Mourners spoke to one another about her gentleness, her perceptiveness, her loyalty, the time she always had for a chat ('the bars'), her compassion, her inability to ignore wounded birds or lost causes, and her unerring belief that it was important to be straight with her friends at all times. Suffice to say, when Eimer didn't like your new jeans, there was no danger of you hearing it from from a third party. And she was always the quickest route to finding out just how stylish your new haircut was (or indeed, boyfriend/girlfriend was). And boy, did she enjoy telling you.
Those who had made it to New York recalled her informative and irreverent tours of the Big Apple, which invariably involved a long stand at the Old Stand Bar on Third Avenue where Eimer minded shop and held court. The generosity of the Cunninghams to Derry emigrants, holiday-makers and World Cup interlopers, was legion.
Eimer's family adored her - always did. The commitment shown by them during her illness was humbling to watch. And yet, they would all tell you they loved being there for her. She inspired them. They would later remark it was never a chore to help Eimer - and that the only person who ever minded was Eimer herself.
Eimer was dedicated to helping others with MS. And over the last decade she became a leading light in revamping the Foyle MS Society. In recent years, the group has organised keynote conferences, information days, and a variety of other activities including healt h programmes, stress management classes, Tai Chi classes, yoga clinics and physiotherapy classes. Terry, Eimer's partner, intends to continue managing this service in Derry, and for that many people here will have cause to be very grateful.
Conversely, Eimer went to great lengths to protect her friends from the damage wrought by her own illness, to the extent that most of us will never remember her other than as a healthy and wonderfully vibrant human being.
Terry, whose immense love for Eimer was visible in everything he did for her (and to everyone who knew them), will miss her hugely, as will her parents, Michael and Margaret, her siblings, Catriona, Grainne, Michele and James, and her extended family. To all of them go our thoughts and deepest sympathies.
Ar dheis De go raibh si.
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My Story
Look past the shiny scooter, I don't want your pity -
my kids think it’s cool.
Look past the wheelchair, I cannot walk today, but -
I have run down mountains, my hair flying in the wind.
Look past the crutches,
My blood has rushed with adrenaline leaping from a plane.
Look past the walking stick,
I used to dance all night.
Look past the stumbles and bumps,
I still laugh and dream.
Look past the superficial - can you see?
I have not changed, I am still me.
A friend to confide in, a lover, a mother,
Just 'me'.Naomi O'Loughlin Jan 07
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NAOMI'S STORY - I've done a sky-dive & I want to learn to drive a lorry
I guess I
reacted much the same as anyone else would. After two weeks of evading my questions
whilst demanding more tests, the silence from the doctors and nurses was becoming
unbearable. After the first week, I had been told I could go home; I waited for mum
to come and pick me up, then got the news that a cancellation meant I could have
an MRI scan. Back on the ward I was informed that I couldn't go home after all,
and could I wait for a doctor to speak to me. I just wanted to go home then; I
knew I wasn't having a brain haemorrhage or a stroke, which was what I had feared
when I felt the numbness slowly spreading over the left side of my face, the power
draining from my body and a headache that felt like my brain was trying to force
its way out through my eyes. Finally, after 15 days, a young doctor in a white
coat sat on the edge of my bed and hesitantly broke the news that I had multiple
sclerosis. I was relieved. When I think back now I am amazed at my ignorance;
I thought they would give me a tablet and I would be all better. The moments of
revelation were to come slowly, over the next few months as I pieced together
information from different sources and realised I was going to have to fashion
together a new life for myself.That was August 2004, but unknown to me I had had my first episode of ms in 1998, just shortly after getting married. I continued to have small sporadic bouts of seemingly unrelated symptoms and had always considered myself clumsy and uncoordinated. It wasn't until the birth of my second child, in 2002, that things went spectacularly wrong. After Kieran was born, I went home the next day eager to get into a normal routine. Unfortunately he had his own problems: first with reflux and then at five weeks he was admitted to hospital with potentially fatal RSV, a form of bronchiolitis. The stress, lack of sleep, lack of support and trying to care for a sick baby and a 16 month old toddler brought on my first bad relapse which, undiagnosed, lasted for 18 months. During this time my whole personality changed, I was weepy and angry as the pain was so bad. Unable to lie down due to the screaming muscles in my shoulders and back, I spent almost a year sleeping upright on the sofa at night. At times I couldn't walk and hadn't the strength to change my son's nappy. Of course I went to the doctors many times, and was patronised many times. One told me the pain was all in my head because I was depressed, and prescribed anti-depressants. Another told me I had post-natal depression, and prescribed anti-depressants. A third doctor finally diagnosed me with fibromyalgia and, yes, you guessed it, prescribed anti-depressants! I tried to point out to no avail that anyone would be depressed if they had to suffer that amount of pain with no let-up, very little sleep, whilst trying to bring up two young children. No one seemed very interested in getting to the root of the problem, it was as if they had summed up the situation and labelled me as a downtrodden attention- seeker. I felt I was being humoured rather than believed and it wasn't a nice feeling. I was brought to the very edge more than once over those 18 months and only the love of my husband and kids got me through.
I began to recover and became determined to prove to myself that I was neither depressed nor attention seeking. I enrolled in an honours degree course in Biology at the University of Ulster in Coleraine in September 2003, at that stage still unable to walk up the steps of the university. A stretch of remission lasting almost a year meant I flew through the first year, finally having found something which made my heart sing; I had planned to go to Edinburgh to study Biology at eighteen, but then I met my husband and ended up running a bookmakers until I had my first baby.
Anyway, I ended up in hospital that next summer and finally got diagnosed with relapsing remitting ms. I started beta-interferon treatment in Feb 2006 and hope that will slow the progression of the disease.I spent this year (my placement year) in the university laboratories, working as part of the Microbial Biotechnology Research Group. It was demanding work and made difficult by the ms; but extremely enjoyable to have the chance to do some original research. My supervisors have offered me a PhD in Microbial Genetics and Biochemistry when I graduate in 2007. Hopefully I'll be able to take them up on their offer.
I do feel incredible resentment sometimes; before ms became a major part of my life I used to hike, walk, swim and party, party, party! But I have realised over the past few years that there's no point in sitting in a corner and letting life pass you by. Now I try to look at everything I do as a challenge, and it doesn't matter whether it's big or small; it could be doing a pile of ironing, or winning an award at uni.
When I was first diagnosed I began a list of things to do. Some were wee things, like
dye my hair black and get blue hair extensions (it looked good!), another was to finish
my degree and some were, well, maybe a bit more ambitious. I've wanted to go to Kenya
on safari since I was five years old, I want to visit Australia and show my sons the
kangaroos and I want a cherry red, two door, convertible, top-of -the -range Mercedes!
My list is a work in progress; things are constantly added to it. But I soon realised
that my list isn't a pointless dreaming exercise; for me it symbolises hope; I will
finish my degree and I will see Africa. My outlook on life has changed, now I'll try anything once. In June I organised a sky-dive for myself and 11 friends which raised over £3000 for the ms society; it was the most exhilarating experience I've ever had, and it shocked me a bit that I did have the courage to go through with it! This summer I want to learn to drive a lorry. To some it may sound crazy, but I'm sure others will understand that when such uncertainty surrounds your health, you want to cram as much into the time that you've got. That's not pessimism or optimism, it's realism; and it leads to a much happier life. I do wish that I didn't have ms; but it has thrown my priorities into sharp focus; family and fun!
TopDECLAN'S STORY - I found out by accident
My life was full before I was diagnosed with MS. I played a lot of sports and went running a lot. I lived a normal happy life with my wife and two children. It was while out running one day that I experienced numbness. I would be running along the road and suddenly I would start to stumble; it was really strange, I hadn't a clue what was wrong with me. I was experiencing tiredness and some numbness and just thought that I was overdoing things a bit. At the time I was working in the catering section of a hospital in Dublin with people who had MS. One of my friends at work had MS and had to leave, but I never thought for one moment that I could have MS. I used to enjoy doing the gardening a lot but it got to the stage where I would get tired and it was so frustrating because I hadn't a clue what was up.Eventually I found out by accident what was wrong with me. I was in the hospital during one of the periods where I was experiencing numbness and tiredness. I overheard a doctor saying that he thought I had MS. I was stunned. I couldn't believe it, especially the way in which I found out. I spent five years in the catering job after being diagnosed but had to give it up eventually. I had difficulty coming to terms with the fact that I had MS. I even thought at the time that my wife would be better off without me but thank God she stuck by me. I began to get involved in the MS Society in Dublin but my wife is from Derry and we moved here in 1993.
When we came to Derry, my MS was getting worse but I still enjoyed sports when I could and doing as much of the garden as I could manage. Even now, even though I get tired, I still like to go out in the garden. I cut the grass as best I can. When you look at the results it gives you a great sense of achievement Eventually I made contact with people in the MS Foyle Branch. It was great to get together with people who knew what you were going through. I gradually got more involved in the activities of the Branch and now I serve as a member of the committee.
The greatest frustration comes from being unable to do some of the everyday things for my family. My wife is the one who goes out to work; she's the main earner in the family. I don't get much care allowance. A carer comes in for half an hour each day and no allowances seem to be made for the fact that my wife is out all day at work. So I'm on my own for a good part of the day. I don't know about the future. I don't think I will be able to work but I do enjoy my IT course at the North-West Institute which gives me a great sense of achievement. I'm learning how to use programmes such as Photoshop. One day one of the other people on the course asked my advice about something. It pleased me that someone would come to me for advice on something to do with the course; it showed me that despite my MS I could do as well as the others.
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CLIONA'S MS STORY - I have MS…MS doesn't have me!
My name is Cliona Evans. On 24th October 2005 I was diagnosed with relapsing and remitting MS at a private neurology clinic in Belfast.I was making plans to go to university in the summer of 2004. I remember I began stumbling for no apparent reason and I had an overwhelming numbness sensation in both my legs and also pins and needles. I had no idea what was causing these various symptoms but I originally put the numbness down to poor circulation and tiredness. I remember originally experiencing what I now know were 'attacks' shortly after the birth of my daughter Jennifer-Ella in 2003. I would tire easily and suffer from some numbness and pins and needles. I thought all of these symptoms were just the result of my busy life style including being a new full time mum, combining breastfeeding and working part-time so I simply put my fatigue and all the strange symptoms down to the simple joys of motherhood!
In the summer of 2004 I thought it strange that I kept getting bouts of numbness in my legs and suffered from exhaustion that seemed to last anything from a few weeks to a month or more so I decided to visit my GP. The doctor I saw began to explain how numbness and pins and needles in the legs is usually an indication that someone is over-weight and that I should try to lose some weight. After losing a few pounds ironically the numbness cleared up and went away. It was such a relief. I had no reason to believe that it was something else and I could now relax and get on with my life as a mother to Jennifer and wife to Rob.
Life went on and I decided to start driving lessons. Looking back I had quite a few of what I now know were 'relapses' during my driving lessons. I remember my feet being numb whilst I was out driving and I just thought again my circulation was poor and perhaps I had been holding my feet in the same position for too long. This numbness of both my feet cleared up after a few weeks and I thought nothing more of it until a few months later. A few weeks before I was due to take my practical driving test in July 2005, I developed a horrible numb sensation in my left hand and arm. I put it down to nerves and a friend suggested it could actually be a trapped nerve. Thankfully I managed to ignore the numbness the best I could during my test and I was ecstatic when I passed first time round! Later that evening though my celebrations were cut short. I was at my sister's house when I noticed that my co-ordination was scarily out of control. I remember trying to smoke a cigarette and the hand I was holding it in just wouldn't do what I wanted it to. I kept dropping and misplacing my cigarette. It was extremely frustrating. It was the same when I tried to pour myself a glass of orange juice using my left hand. I kept spilling the juice and pouring it in every direction except where the glass was. I became really concerned about what was happening. A few nights later and my co-ordination was still out of sorts and the numbness in my left hand and arm began to spread to my chest and torso. I was really upset and my husband Rob agreed to take me to the hospital. After a lengthy 9 hour wait in A & E I saw a doctor who did a few simple physical examinations. She asked me to touch my nose and then her finger and I just couldn't do it. No matter how hard I tried, my co-ordination was that bad my body couldn't seem to follow a simple instruction. My brain was registering what to do but my body was acting in such a strange way; it was as if it didn't belong to me. The doctor decided to take a few blood tests to rule out a viral infection. In the end, after failing a few more physical examinations she said she would refer me to see a neurologist, but warned me that the waiting time to see a neurologist in Derry was pretty long. In fact, it has been that long of a wait that recently (May 2006) I have just received a letter from Altnagelvin hospital saying that my name is still currently on the waiting list to see a neurologist. I find this appalling and I know that by now I would be going absolutely mad with symptoms and no diagnosis if I had not gone private.
After many more visits to my GP complaining of persistent numbness and vision problems with my right eye she kindly agreed to refer me to see a neurologist privately (luckily through my husband's health care scheme we had medical insurance) and I saw Dr. J. Craig at the Ulster Independent clinic up in Belfast in September 2005. Within 4 weeks I had a physical examination, an MRI scan, blood tests and my MS diagnosis. It was so quick and I was so glad to know what was wrong with me.
At first the news didn't sink in and I remember going shopping in Belfast after Dr. Craig told me the news. To be honest I didn't really care about having MS. It just totally went over my head. My husband seemed more concerned than I was! We didn't really understand what it was and we were under the impression that I would receive treatment immediately and this would 'stop' my MS. We were in for a shock when the local MS nurse explained that I was once again on a waiting list to see an NHS neurologist who is the only person who can access me for and then prescribe the drug I needed. Then to be told that if I am eligible for the beta interferon drug treatment that I would once again be placed on another waiting list for the drug up to two years. My world came crashing down. Everything I was being told was incredibly negative and too much for me to digest. I wrote to my private neurologist and explained my plight and he kindly referred me to see an NHS neurologist he knew who worked in the city hospital in Belfast. I saw Dr. Mc Donnell in December 2005 and he assessed me and said I was eligible for beta interferon injections but that the waiting list for this drug is two years.
I have been on the waiting list for almost 6 months now and I am trying to stay positive knowing that one day I will hopefully get it, but it is hard to accept that the drug I so desperately need isn't currently available for me. I feel this is very cruel and I just wish there was some way I could get it right now. I know there are many other people in the same boat as me and it is just so unfair and really upsetting. My husband Rob and my little girl Jennifer keep me strong. I am keen to live a normal a life as possible and get on with things but when I'm being denied a drug that has been proven to help me I can't help but be a little bitter sometimes.
My outlook on life has definitely changed and although I get tired (often exhausted!) a lot more often now and I have had quite a few more relapses this year already I try to live every day to its full, and if not for me then for my little girl and her daddy. I want my daughter to have a normal and fun childhood and she won't be denied any of my energy. I still enjoy most of the things that I used to like driving my gorgeous little car, going out with friends and going shopping when I'm feeling good and don't have a relapse that has too much of an impact on my life. I am still the same person and always will be. I am so thankful for people like Terry who is a fantastic ambassador for the MS Society Foyle branch. He keeps me right and has become a great friend. My motto for my life with MS is 'I have MS - MS doesn't have me!'
Updated:13/01/2007 My husband Rob and I are expecting our second baby in April 2007. I just can't wait to meet him or her and then hopefully start beta interferon injections a few months after the birth.
TopSHAUNA'S STORY - 23 years old and living with MS for the past 13 years.
My name is Shauna, I am 23 years old and I have been living with MS for the past 13 years.I was diagnosed with Multiple Sclerosis in 1993. I was twelve years of age then. My first attack was double vision; we all thought it was to do with my eyes, but then the feeling in my body was weird, half of my body felt like pins and needles and the other half was numb. I couldn't understand why I was feeling this way, was it all in my head, I wondered?
After one year of attacks I was sent to the Royal Victory Hospital and that's when I had a lot of tests done all about the nervous system. I had about 7 MRI scans done and a lumber puncture which is a needle in your spine to get fluid. That was really sore, I then had to lie on my back for eight hours, that was hard to do when you're that young. So a year and a half went by and my attacks remained. Three years later when I was 15, I had to go up to the City Hospital in Belfast to see a doctor called Professor Hawkins who is now my Neurologist. He had never tried this drug for MS on a young person at the age of 15 or 16, the drug is called beta-interferon for relapsing remitting MS which is the type of MS I have. I have been on it for seven years and it works for me. I would get less relapses now than when I was younger. I used to get 8 or 9 relapses a year. There are side effects from the drug but after six months my body got used to the drug. It helped me in a great way.
Doctors told my mum and dad NOT to tell me about my diagnosis because I was very young and I wouldn't understand, I wasn't even a teenager yet. So my mum felt it was time to tell me when I was 15 years old. From the age of 12 I had been telling my friends that I had inflammation of the brain just so I could put some kind of name to what was going on with my body, even though I DIDN'T UNDERSTAND MYSELF. It was crazy; I thought it was all in my head, I couldn't understand it because I didn't have a name for it. Then I did, it's MS. So after a while I started looking more in to MY MS because it's me who has to deal with it. It was hard but we all get through the bad days, we have more good days than bad when it comes to MS.
Life has been hard through the last thirteen years but I now understand the dos and don'ts of my MS. It gets better when you're in control of your own body. You get to know your body while going though relapses and it is hard, you have your good days and bad .I have a better quality of life now .We just have to get on with it for ourselves, but never push yourself, just do what you can, because I always pushed myself and then ended up feeling down.
I am now 23 and its great to be in control of my life and my Multiple Sclerosis. It was hard at the start and I mean hard, it was not easy. I went through every feeling and every emotion in the world and experienced a lot of "ups and downs". When I was young I thought I wouldn't have a life because I had MS, I thought I wasn't like every girl I knew but its ok to be different, I found that out, I just wanted to be like my friends but I am my own person now. I feel I have a brighter future ahead of me and I am better equipped to deal with my MS and keeping myself positive.
Shauna Hutton 2006
Webmaster's comment:
MS is commonly thought of as occuring mainly to young adults with twice as many women as men affected. However, a significant number of young teenagers are diagnosed. Shauna's account of how she deals with her MS is inspirational and helps to focus on the difficulties the onset presents both to the young person and the parents.An encouraging Italian study of the effects of beta-interferon on adolescents & children was recently published. Read a report of the study on the News & Research page.
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EIMER'S STORY - Living with Multiple Sclerosis
One day about ten years ago, my partner and I were walking through Bundoran when my leg gave way. I remember laughing about it but then I couldn't get up. I sort of brushed it off but Terry insisted I see a doctor.
I realised I would have to see someone because although this was the first real incident, I knew myself that I hadn't been well. I especially noticed that I couldn't walk as far as I used to and it became clear to me one Bloody Sunday Remembrance march when I noticed I wasn't keeping up with my friends. I found this unusual as I was quite fit and suddenly I was finding it difficult to walk anywhere.
To be honest, I never dreamed I was suffering from something so serious. In fact I actually believed it was all in my head. But I did go to see my GP. He took blood tests but found nothing so I tried to get on with my life. However my sister was getting married and I wanted to walk down the aisle with her with confidence so I decided to try alternative therapies to help me feel less nervous. They seemed to do the trick but they weren't helpful in the long term.
Finally I was referred to the neurology department in Altnagelvin and then up to Belfast. I was eventually diagnosed with MS in December 1997. I didn't know then which strain of the condition I had but I have since found out that I have primary progressive MS. They may have a policy of not telling you but if I'm honest I had already worked it out for myself.
At the beginning my life didn't change that much but then I needed a walking stick to help me about. That was such a huge thing for me, to admit that I needed it all the time. I then had to rely on further aids before finally admitting that I needed a wheelchair after a holiday to Lanzarote. Each of those decisions was massive and a real dent to my confidence. Mentally you are just not prepared for the impact that these decisions will have on you. I have always worked and I have had to admit that I will never again be in full-time employment. A night out cannot be a spontaneous decision. Everything has to be planned right down to the last detail. Lately, my eyesight has really deteriorated and I find that really hard because I would have read a lot. It's so frustrating. My partner does read to me but it's not the same. I also suffer from tremors and sometimes just picking up a cup of tea can leave me covered in it. I am conscious of them and it stops me going out with people who don't know me.
My older sister, Grainne, who lives in America, has also been diagnosed with MS but there is no history of neurological problems in our family. Her diagnosis was so different from here. One day she had a fall and the next they had her in and MRI scan. Her strain is relapse-remitting but it just shows the difference in treatment. There is nothing they can do for me here. Thankfully people can be treated locally and I was on steroids a few times but these can't stop the progression, they just help alleviate the symptoms. As regards making me stronger, there is nothing for me.
Things have become so difficult. The small things you take for granted are not an option anymore. Popping out for a cup of coffee can't be done at the drop of a hat - everything needs to be planned. That's hard. I miss the spontaneity. The lack of independence is something I've had to get used to and thankfully I have a really supportive family and I don't now what I'd do without Terry. I can't go anywhere on my own and I do hate having to rely on people.
I have stopped thinking about the future. I haven't done that for years. Today I just take each day as it comes. The future is too scary to contemplate. I suppose that's s coping mechanism but some days I do think, 'What did I do to deserve this?' I know that's not constructive but there are times you just can't help it.
Eimer Cunningham 2005
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MARGARET IRWIN'S PAINTINGS
Margaret's paintings won 1st prize at a UK wide competition for people in residential homes throught the UK. There were about 1500 entrants. Margaret is currently a resident at Longfield Nursing Home where she conducts a weekly art class.
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MOIRA'S STORY - Still Smiling
Twenty two years ago, after my daughter Karen was born, I developed a problem with my eyes. I just couldn't focus. The doctors then put it down to post-natal tension. Three or four years later we were moving house. I experienced heavy limbs - arms and legs - and I was incredibly fatigued. The doctors put that down to the stress of moving house.
I worked in an accountancy office at the time and naturally it was very busy. When you are so involved with your career, it is difficult to switch off sometimes. I had another episode and was off for a couple of weeks. Again I had similar symptoms to before - fatigue and heavy limbs.
The very first Female Five Mile Marathon was held to raise funds for the Foyle Hospice. I had been involved in running at school, had been a jogger and joined Keep Fit for many years. I trained very hard for the marathon and ran the distance from the Everglades to the Templemore Complex.. Wow, that was a good one but I never returned to Keep Fit again. I lost the ability to run, to jog and train. It's something I miss dreadfully still today. I was always a very active person.
I knew then that something was really wrong. In my mind there was no reason why I couldn't keep active, but my body refused to allow me. I hated feeling like I was complaining all the time and I got to the point where I just stayed silent because people would have thought that was all I did. In 1991, I was off work for six weeks being treated for vertigo. I was very unsteady on my feet and I had double vision. I remember watching tennis on television, sitting on the settee with one hand over my left eye so I could see it properly.
I returned to work but never felt 100% again after that. I experienced a number of different episodes. In 1992 I was finally diagnosed with MS, ten years after I experienced my first attack. I was first told it may be a possibility I had MS. They said it might be a virus. I had a lumbar puncture in hospital to determine exactly the cause of my suffering. The spinal fluid revealed I had MS. I remember one day in March, my husband, Des, came home for lunch and the GP arrived at the door. Suddenly my whole life was turned upside down. It wasn't only my life, it also affected Des and daughters Karen and Claire who were 10 and 13 at the time. It was very hard to accept at the beginning. You feel like a hypochondriac when you first relapse. You feel awful, you get numb, you get heavy limbs and pins and needles. You feel very fatigued and bladder weakness is a massive problem. I refused to give in, though, but I did my share of crying. I still do some days when I am down although I am a strong character. Looking back, remembering everything I and my family went through, I wonder where and how I got the strength to get up in the mornings. But you have to just force yourself to get up and get out. Once when I was in hospital I realised I didn't have enough power in my legs to walk. After a course of steroids, I slowly regained the ability to walk unaided again even though my legs felt quite heavy.
It's difficult to explain but, because you feel so different on the inside, you think you must look different on the outside. You think people won't recognise you. You get anxious. However, after the first year I put on two stone because I couldn't get about very well, I decided that was it and I was getting out and about more. I was wracked with nerves but I got out eventually. Through sheer determination I took control of my life. I went on a low fat diet with no saturated fat at all, no red meat and no dairy products. I took up yoga, which to this day I couldn't do without, and returned to my normal weight.
My friends kept getting me out - we now have a night out every month, twelve years on. It's become a bit of a tradition. During the first few months the phone never stopped ringing and people were always at the door. I received lovely letters from girls I had gone to school with who I hadn't spoken to for years. The support was tremendous. I don't know how it would have been without all that. My father, mother, sisters and brothers were all very supportive. They helped with housework and cooking and were always around when I needed them. Especially, I have had support, understanding and encouragement from Des over the past twelve years. In September, when schools started back and people returned to routines, fewer people came. One day I realised there was no-one about and I was about to call my husband when my father walked in. We had one of those great talks you can have sometimes and I realised then that there would be days when there would be nobody about and I would have to get on with it. I knew the support was there but I couldn't depend on others to make me feel good. I had to do that for myself.
I didn't drive for ages after I was diagnosed. Then one night, Des and I went to the pizzeria. He looked at me and said, "If I have a drink, will you drive?" Well I couldn't deprive him of a drink or two so I drove home. I haven't looked back since. He probably did it deliberately but it worked.
I have met so many people outside my normal circle through the MS Foyle support group in Derry. Together we have worked to transform it into a great place to be and to spend time. We do yoga, Tai Chi, physiotherapy. We chat and have a laugh. Personally, yoga and Tai Chi were a turning point for me. It's an incredibly important area of my life that I value highly. It's good to meet that way. You're doing activities and afterwards you can moan to someone if you are bothered about something. 70% of the members of the Branch have MS and the majority on the committee have MS. We have taken control of our lives and the way things are done. We meet in the Foyle Disability Resource Centre in Derry which Foyle Trust lets us use.
For the past two years I have been having Beta interferon treatment. I was apprehensive about starting on it. I thought the idea of self injecting three times a week was strange and I didn't really know what interferon was. But it's very natural. It works as a communicator between the cells in your body in the same way as it would happen normally. I could have relapsed this year but I didn't. My neurologist and I believe it's down to the therapy. Two years into it I have had no big relapses.
Sometimes I wonder what life would have been like if I didn't have MS. I wonder what holidays we would have taken, how work would have gone. When you hit a relapse it's terrible. You think "Is this it? Am I beginning to go downhill from now on?" You'll always have days when you feel down, but I sit and think, "Moira, you've gotten through these before. You will again. And I get up and get out. It's not easy being positive all the time but you have to try. Two years after being diagnosed we went to Portugal on holiday and as we were getting on the plane, my daughter turned to me and said, "Mum, you're smiling but you hate flying!" I replied, "I know, but a few years ago I thought I would never be able to go away again. And now I am." I still do. I love the sun. And I still smile. You can make it work for you when you take control of your life. It feels good to know you are a battler and you're coping.
Moira Leitch 2004
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HEATHER McNEILL - A Poem
Heather is a member of the Coleraine MS group. She was diagnosed 6 years ago but has continued in full time teaching with occasional absences due to relapses. She joined the Portrush Women's Writing group and wrote this poem about MS.
Symptoms, numbness and tingling
Tiredness brought on by general duties
Like housework, gardening and washing.
Messages they say, blocked by some lesions
No reason given, childhood illnesses, inherited?
MS the dreaded letters are spoken.
"You're in relapse at the moment,
How do you feel?"
"How do I feel? How does he think I feel?
My world's just been shattered,
I'm deflated, angry,
The perpetual question on my mind,
"Why me?"
It won't defeat me, nothing ever does.
Sure it's all set out for us anyway.
It's meant to be, there's always a reason.
A strong character can overcome anything.
And aren't I strong?
Thoughts of the future diminish in my mind,
I'll continue to concentrate on the present
And let the future look after itself.Heather McNeill
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BRANCH LIBRARY
Terry is establishing a small library of books and media at the MS office in Strand Road that can be accessed by members. Anyone interested can contact Terry at Tel: 02871 360831 or email: msfoyle@tiscali.co.uk Submit your book review or your comments for this page to webmaster.
BOOKS Title Author Up The Creek With A Paddle Mary Bradley Recent An account of how she & her husband believe LDN helps his PPMS Tap-Dancing Out Then? Gary Campbell The Complete MS Body Manual Susie Cornell Recent Multiple Sclerosis Jan de Vries Hail or Shine Mervyn Gallagher My Dad's Got MS Gary Hetherington & Carolyn Young Standing In The Sunshine Cari Loder A Guide For People with Multiple Sclerosis MS Ireland MS: What Does it mean For Me? MS Research Trust Careers in Nursing & Related Professions Linda Nazarko Multiple Sclerosis at your Fingertips Ian Robinson, Dr Stuart Neilson & Dr Frank Clifford My Mum's Got MS Penny Sayer & Carolyn Young Living with Multiple Sclerosis Drs Robert Shuman & Janice Schwartz Multiple Sclerosis - The Natural Way Richard Thomas Carer's Handbook St John's & St Andrew's Ambulance & Red Cross
TopVIDEO The Onward Journey - Beta Interferon The Pritchard Lecture - An illustrated talk by Prof Weiner from Boston on causes & treatments of MS in lay man's language in Belfast on 11 Septemeber 2001 -
Invitation to submit items for this page
It is hoped that members, carers, friends or visitors to the site will submit material that they feel may be of interest to others for inclusion in this page . If you have a personal story, advice, a suggestion, a proposal, a photo or a book review that you would like to share click on . and email it together with your name, address, telephone number, making clear that it is for the members' page (e.g. by entering 'members page' in the subject box). Personal information is required for authentication purposes but your name and/or other information will not be posted or disclosed to third parties if you indicate that you wish it to be withheld.
Rosemary McCloskey MBE is associated with a fund-raising charity in England that supports a range of charities. She has a home in Donegal and was provided with a lift by Eimer's father, Michael. She met Eimer and the Cunningham family and in discussion with them, Rosemary discovered that the local branch was trying to provide physiotherapy for members. She secured funding that enabled the branch to employ a trained physiotherapist. This service is greatly appreciated by members.
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