MS Ireland
Informing, Supporting and Caring for the MS Community
Sexuality and pregnancy were the main topics of discussion at this years Youth Congress of the European Multiple Sclerosis Platform (EMSP). Over the previous twelve months there were online email discussions with a group of people interviewed about their sex lives and issues that affected this...
Published by Emma Rogan EMSP Youth Representative on Friday May 25 2012 01:06 PM
Join Multiple Sclerosis Ireland this World MS Day, Wednesday, 30th May to raise awareness, raise issues and raise funds! 8,000 Faces of MS: Let's Face It Together! Meet the faces of MS – people affected by MS, staff and volunteers at one of our information and support events around...
Published by MS Ireland on Friday April 13 2012 02:52 PM
MSIF has launched a new survey about the process of getting a diagnosis of MS. The survey is open to anyone with MS. If you are interested please click on the following link: http://www.surveymonkey.com/s/G7XF6VV Results will be issued in the Summer edition of MS in Focus titled ...
Published by MSIF on Wednesday April 11 2012 02:57 PM
People with MS refused treatments... MS Ireland Is Beginning A Campaign To Lobby for Better Access To Treatments Disease modifying therapies are an important part of managing MS for many people. Avonex, Betaferon, Copaxone and Rebif are all first line therapies licensed and widely ava...
Published by MS Ireland on Friday March 23 2012 03:11 PM
Maximise your mobility and movement... Mobility Matters in MS has produced an exercise DVD. The DVD will show you how to perform 7 gentle exercises using a resistance band, which can help to maximise your mobility and movement. Order your free copy from the Mobility...
Published by Mobility Matters in MS on Tuesday March 13 2012 04:32 PM
MS Ireland is assisting Teva Pharmaceuticals Ireland, to conduct a survey of patients with Multiple Sclerosis. Dear Reader, The aim of this survey is to better understand how people cope with their MS in terms of communicating with others, managing their therapy, sharing of experi...
Published by Ireland/Allmarket Research Ltd on Tuesday March 13 2012 04:26 PM
Community Employment participants receive awards The Minister of Social Protection, Joan Burton visited the MS Care Centre today to learn more about the Community Employment Scheme and award participants with their FETAC Level 5 Awards. On hand to congratulate the gradu...
Published by MS Ireland on Friday March 09 2012 04:37 PM
North West Regional Office has moved... L-R: Martin Cassidy Donegal Branch, John Gallagher Donegal Branch, Muriel Perry Treasurer Donegal Branch, Catherine Peoples RC, Paul Dawson PwMS, Charlie Mc Laughlin CW, Senator Brian Ó Domhnaill, Gerry McMonagle Letterkenny Lord Mayor, Geral...
Published by MS Ireland on Tuesday March 06 2012 04:42 PM
We are looking for people with MS to help us... Multiple Sclerosis Ireland wants to create more awareness of MS in Ireland. We want the public to know more about living with MS and the services of MS Ireland. All across Ireland we are looking for people who are willing to speak to t...
Published by MS Ireland on Thursday February 02 2012 09:49 AM
The Disability Federation of Ireland is looking for feedback on a new policy they are helping to create. Many people with MS use personal assistants to help with aspects of daily life. The Disability Federation of Ireland is looking for feedback on a new policy they are helping to create. ...
Published by MS Ireland/DFI on Wednesday February 01 2012 09:53 AM
'National MS Conference' event streaming live on Saturday, 22nd September 2018. Watch Live from 9.45am
This week Declan Groeger shares with us what it is like being a man living with MS I was diagnosed with Multiple Sclerosis (MS) in 1988. Married with two small children, a mortgage and an overdraft. The day the doctor said “You have MS”, my life changed forever. At that time MS had no known cause, no treatment and no cure. Any plans I had for the future were left swinging in the wind. The cause is still unknown, a cure has still not been found but there are many treatment options available now and more in the pipeline. How did I feel on hearing those unforgettable words? It was 30 years ago and memories dim with time, and MS, but I do remember being overcome with emotions, crying and wondering what path my illness would take. I did take heart from the fact that a maternal uncle had been living with MS for more than 20 years and he was doing fine. Did I feel inadequate after the diagnosis? Certainly not in the immediate aftermath, and probably not in the early years while I was feeling good. I felt so good that I sought a second opinion after ten years. This unfortunately confirmed my diagnosis. Deep down I knew I’d been grasping at straws- the signs and symptoms had become more apparent and I knew the downward slide had begun. I started medicating at this point. I never saw myself in the classic ‘hunter gatherer’ role but I knew that as time passed any role I would, or could, play in our family life would be seriously affected. Jean and I discussed it and agreed that we couldn’t rely on my ability to remain in gainful employment and bring in a steady income and from then on Jean donned the mantle of bread-winner. I was no longer ‘the man of the house’, although I remained in full-time employment for a further 22 years. MS had relegated me to the second division. That was the first knock to my manliness and many more knocks were to follow over the years. I was afraid of being perceived as lazy as long as my illness remained invisible. That’s not to say I wanted everyone to know I had MS. It was my private torment and I didn’t know how to handle its invisibility. All of the people who mattered to me had learned to live with, and accept, my constraints a long time before I did. I slowly came to realise that I was the only one who looked at me the way I looked at me. Jean never made me feel inadequate or lazy, that was all down to me. My share of the housework was to look after the garden but I always felt I should be doing more. One of my earliest pieces of Assistive Technology was a ride-on lawn mower obviously needed to cut the grass but also to move tools etc. around. Every job took much longer for me, used twice as much energy and in 2014 I threw in the towel on that particular activity. I was never a big drinker but I did enjoy having a few pints. I never had a ‘local’ as such but even that ‘not drinking much’ suffered from MS; I was no longer comfortable going to a pub. The prospect of wobbling my way to the bar or toilet became too much of a struggle and I was very much aware of people watching and silently passing judgment. I’m not drunk I have MS. Men of my age group are not great at discussing and sharing our thoughts and feelings and I am no different. I kept my feelings of inadequacy under tight control. There was no reason to burden anyone else; suck it up and get on with life. I would urge other men living with MS not to suffer in silence but to seek out help and talk about it. Useful links AWARE GROW Irish Men’s Sheds
Wait times for people with Multiple Sclerosis among worst in Europe In advance of MS Ireland’s annual meeting, the organisation has called on Minister Simon Harris to honour a commitment to meet and discuss ending the numerous waits that patients with multiple sclerosis suffer. While the HSE does not currently compile information on waiting times for people with multiple sclerosis[i], the MS Barometer[ii] ranked Ireland’s access to treatment and therapies as 23rd out of 25 countries assessed. Approximately 9,000 people in Ireland are living with MS. In a video released to coincide with the annual meeting, Declan Smith - who was diagnosed in 2014 - said: “You’re looking down the road. I can live a fairly normal life with some adjustments, but I can see it getting worse. I know the Minister told MS Ireland that he would speak to them ‘shortly’, but I don’t know what shortly means because it hasn’t happened yet.” Where statistics are available on the wait times for people with MS, there is evidence that the Irish health system subjects patients to long delays: Long waits for appointments. Following preliminary diagnosis, people with MS wait for their first outpatient appointment with a neurologist (as do patients with other neurological conditions). As of June 2018 over 4,000 people were waiting more than 18 months to see a neurologist[iii]. There are also very long waiting lists to access essential physiotherapy[iv]. Patients with an MS diagnosis also wait for their subsequent appointments: in an MS Ireland survey, 44% of people with MS waited more than six months for their most recent neurologist appointment[v]. Long waits for MRIs: a key step in diagnosis is an MRI scan. According to the MS Atlas[vi], Irish patients’ 12 week wait for an MRI is the longest in Europe (along with Sweden and Denmark). By contrast, in Italy patients wait on average 1 week. Long waits for treatment: People with MS are waiting twice as long as recommended to start treatment. The HSE Model of Care for Neurology Services in Ireland, launched in 2016, recommends that people with multiple sclerosis start active treatment within 6 weeks of initial presentation: the best case scenario at the moment is 3 months[vii]. Long waits for new medicines: In Ireland, the government’s process for making a new medicines available to patients takes an average of 348 days. In some cases it can take over 4 years. Ava Battles, Chief Executive of MS Ireland added: “In July, Minister Harris said in the Dail that he would meet with us to ensure new medicines for MS become available in Ireland. No meeting has taken place. I don’t mind waiting to see the Minister, but patients across Ireland are tired of waiting for appointments, for scans, for treatments, and for medicines that are making a difference to the lives of patients who live in other European countries.” “Waiting years for a medicine that your doctor thinks will help you adds significantly to the uncertainty and stress of MS. Anyone who wants to help people with MS get the medicines they need can send a message to the Minister for Health and your local TDs at patientsdeservebetter.com.”
We need YOUR help in contacting TDs and Senators MS Ireland will be holding an event in Leinster House AV room on Wednesday, 3rd October 2018 at 10am. We will be presenting the MS Care Centre Business Case and we will be using the opportunity to call on TDs and Senators to provide a further €600,000 in annual investment which would allow us to cater for the increased demand on our Care Centre. We need your help in contacting TDs and Senators to ask them to come along to the event – if you can attend your local TD’s clinic, please bring the event to their attention and ask them to go along. You can also email them – you can find who your local TD is and get their contact details using this website: https://www.whoismytd.com/ Below is a draft email that you can use – please feel free to adapt the email to include information on your own personal situation and what their support would mean to you. If you receive a response from your TD saying they intend to go along, please let our Information, Advocacy and Research Assistant Aoife Kirwan know so she can follow up with their office to remind them beforehand – email akirwan@ms-society.ie -------------------- Dear Deputy [insert name of TD], My name is [insert your name]. I am asking you to attend an AV room briefing on Wednesday, 3rd October at 10am. This briefing will be delivered by the Multiple Sclerosis Society of Ireland (MS Ireland) regarding a request MS Ireland has put forward for further annual investment in their care centre. The MS Care Centre is a state-of-the-art respite facility. Admitting and welcoming 400 people annually, the care centre not only provides people living with MS and their caregivers a break but delivers a range of therapeutic services, neurological assessments and social activities. Due to decreased income, the care centre only opens 40 weeks per year. MS Ireland are requesting a further €600,000 in annual investment which would allow them to cater for the increased demand on the service. This would see the care centre open 350 days per year, providing an extra 1,128 bed-nights annually. This would allow additional people living with MS the chance to benefit from what the care centre has to offer (there are over 9,000 people living with MS in Ireland). Further investment will not only support people living with MS, it will also support voluntary carers, without whom care in the home would be impossible, putting further pressure on our health system and hospital funding. [If you have any personal details you would like to add in support of our ask, please feel free to write it in] As a member of your constituency, I am asking that you support MS Ireland by doing what you can to help secure this additional funding. Yours sincerely, [insert your name]
This week Teresa McShane tells us about the financial and professional implications of having MS and discovers it’s an emotional journey. Like any long-term illness or disability, MS can have far reaching implications and can literally turn one’s world upside-down. Obviously, all cases are different and vary in severity but in many cases, not only can one’s physical limitations be seriously challenged but also one’s mental, emotional and, more than likely, financial ones. The career aspirations you had may have to be radically overhauled; the lifestyle you had imagined for yourself and your family revised. And ultimately, in order to keep as well as you can, it may mean giving up work at some stage. I had always loved working; it gave me a sense of purpose and belonging. I worked hard from the age of 18 and despite a diagnosis of MS when I was 23, I carried on in employment, through ups and downs, until I was nearly 40. I felt like a worthy member of society who was contributing. It allowed me to live a semi-normal life. Go shopping, go on holiday or treat myself and not feel guilty. This very sense of value I put on myself boosted my self-esteem and mental wellbeing. Like many of my friends with MS that I have spoken to, I was determined to keep going and not be beaten by this inconvenient illness. We forged on like ‘valiant soldiers’ but really, we should have been minding ourselves and listening to our bodies. We dragged ourselves out of those relapses, so we could keep going… until the next one. We were determined to live a ‘normal’ life but found ourselves in a vicious circle of working too hard, exhaustion and sick leave, until finally we copped ourselves on and realised something had to give - or we didn’t and our bodies called time. And that is exactly what happened. So now that I was no longer working, who was I? What was my purpose? I was a leech, a drain on finances, I needed minding, looking after and being supported financially. That mortgage that we took out together when we were both employed now fell on the head of my husband. The monthly outgoings were still the same, but the income was reduced. And when the recession hit and things were oh, so tough, he was the only one who could drag us out of it. All the while I felt like an impotent bystander, a ‘Sitting Duck’! And so began the downward spiral. That mental wellbeing and sense of value I was talking about started to deteriorate - eroded by guilt and feelings of inadequacy. Slowly at first because when I first had to give up work, I assumed I would just take a break and then get right back in the ring. I didn’t realise that one year… two years… 10 years on I would still be outside the workforce and merely a social welfare statistic. But here I was, and that takes its toll on anyone’s emotional and mental resilience. I know I am lucky. When I ceased working I went on Disability and was transferred to the Invalidity Pension the following year. A weekly payment that allowed me NOT to work. This sounds fantastic, you might think - being paid without having to work. Nice one! And for some people, this is the answer to their prayers. But definitely not for all. Many people of my age (48) with MS, who have worked hard to build their careers and have found themselves on Invalidity Pension yearn to go back to work. For starters, the weekly payment doesn’t come close to the full-time weekly wage they were used to and/or needed. But more importantly, they don’t want to be dependent on the State. They don’t want to be dependent on anyone. But common sense must prevail and accepting the way it is doesn’t have to be defeatist. I have been given a valuable commodity… time. Time to take time, to rest when I need to and time to spend valuable moments with my other ‘valiant soldiers!
Today, 13th September we celebrate one of our all-time favourite children’s authors and friend of the MS Readathon, the legendary man that is Roald Dahl. As we step into this magnificent world of childlike imagination and wonder we can’t help but notice that his books are still as fantastic today as they were when we were your age! Roald Dahl is a man that needs little introduction and if we were to tell you all of the reasons why we have chosen to celebrate his works over other authors we would be here a very long time! We are so looking forward to this week when we get to lose ourselves in this fantastical world where anything is possible. Isn’t that the point of reading? When you pick up any of Dahl’s books you know you’re about to be transported to a topsy-turvy world where the witty language is as inventive as the characters using it. One of our most treasured Dahl-isms is actually from the film Willy Wonka and the Chocolate Factory but originates in the timeless book, Charlie and the Chocolate Factory: Willy Wonka is talking about some of the things the children can taste in his lickable wallpaper room. He then says matter-of-factly, “The snozzberries taste like snozzberries.” Veruca Salt responds, “Snozzberries? Who ever heard of a snozzberry?” Wonka puts an end to this by simply stating, “We are the music-makers, and we are the makers of dreams.” It doesn’t matter one bit that we don’t know what a snozzberry is, now does it? The point is that you should never stop using your imagination. It can be whatever you want it to be! Dahl has created so many stories within so many books and each is as varied as the last. One of the things that makes a Roald Dahl story different from any other is his unique ability to take the fantastical and make it seem completely normal. The BFG being the perfect example – shortly into the book there is no doubt left and you begin to believe that there are Big Friendly Giants out there delivering good dreams to children! But of course, Dahl was also a poet and what a scrumptious collection of poems he left behind! If you haven’t read Revolting Rhymes we insist that you go to your local library and find it today! Each poem is based on a traditional fairytale but naturally Dahl wanted to put even more magic into the tales so he created his own endings to wow all of his little readers. Children’s literature owes a lot to Roald Dahl and we are so thankful he shared his wonderful imagination with us. Now go pick up one of his books, open your imagination and enter the lickswishy world of Roald Dahl. Calling on all bookworms! Open a wonderful world of adventure and imagination through reading for a great cause and sign up to the MS Readathon
Calling all bookworms! Sign up to the MS Readathon, Ireland’s largest and longest-running sponsored read for young people.
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22 September 2018: Physiotherapist led Exercise programme for people with MS.
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