MS Ireland
Informing, Supporting and Caring for the MS Community
Almost 10,000 young readers expected to take part in the sponsored reading campaign helping people with MS We have launched the 31st MS Readathon, entering a new era for the sponsored reading initiative. We were joined by MS ambassador Jordan Byrne, 23, who is living with MS, charity partner Lei...
Published by MS Readathon Team on Thursday September 06 2018 10:12 AM
Briefing Document and Position Paper on the need for an MS registry in Ireland MS Ireland has produced a Briefing Document and Position Paper on the need to establish an MS Patient Registry in Ireland. The paper outlines: What patient registries are Why registries are important ...
Published by MS Ireland on Monday October 23 2017 09:23 AM
How to get involved We will join with individuals and organisations across the world to mark World MS Day on Wednesday, 31st of May. This is one of the highlights of our year when we come together to celebrate and empower the 9,000 people living with Multiple Sclerosis in Ireland. The them...
Published by MS Ireland on Friday May 05 2017 09:24 AM
The MS Barometer is a comparative MS survey of the national situation in up to 34 European countries. See how Ireland compares to other countries in a variety of areas including access to treatments, employment and empowerment of people with Multiple Sclerosis. Click on the image below to downlo...
Published by MS Ireland on Thursday March 02 2017 11:45 AM
A new incidence study on MS in the Republic of Ireland has been published. The study, carried out by staff from St Vincent’s Hospital Dublin, was performed to ascertain all new cases of MS diagnosed from 1st March 2014 – 28th February 2015. Highlights from the findings include: ...
Published by MS Ireland on Monday February 27 2017 01:52 PM
This week Willeke Van Eeckhoutte writes about her passion and shares with us how her childhood dreams did come true. When asked what I am passionate about, I need not look very far. I am in it and have my nose it in it quite a bit! People often ask me what brought me to Ireland, to which ...
Published by Willeke Van Eeckhoutte on Thursday December 15 2016 10:15 AM
Firstly, we would like to say a huge THANK YOU to everyone who entered a photo for our 'Places of Ireland' 2017 calendar competition. Our judging panel found it incredibly hard to make the final decision as there seems to be a lot of talented photographers around the country! Winners Rona...
Published by MS Ireland on Friday September 30 2016 09:49 AM
Will YOUR photo make our 2017 calendar? Following on from last year's incredibly successful competition where we discovered that there are hundreds of talented photographers across the country, we're delighted to announce that we are on the hunt for images again! We are creating a 2017 calendar...
Published by MS Ireland on Friday July 29 2016 11:32 AM
MS Ireland has been approached by a production company, Tick Tock films, with the following request: “We are putting together a documentary about the legalisation of cannabis for medical use in Ireland. We are reaching out to people with MS in hopes that they can share their story with us....
Published by Tick Tock Production Company on Wednesday July 27 2016 11:23 AM
St Patrick’s Cathedral ‘Lighting up Blue’ for the 10th National Carers Week in Ireland Family Carers will have the opportunity to take part in events in every county this week as the 10th National Carers Week (13–19 June) is launched in Dublin today by Nuala Carey. Nation...
Published by Care Alliance Ireland on Monday June 13 2016 11:01 AM
We are live streaming talks from our 'Living Well with MS' Conference in Athlone this Saturday, September 22nd. You can join us on the day from anywhere around the world... We are delighted to welcome our guest speakers: 10am: MS Overview and Quality of Life: Professor Gavin Giovanonni, Professor of Neurology Centre: Centre for Neuroscience and Trauma. Research Groups: Neuroimmunology. Barts and The London School of Medicine and Dentistry. 11am: The Importance of Neurorehabilitation in MS: Dr. Jens Bansi, Exercise Scientist; PhD., Rehabilitationszentrum Valens, Switzerland. 12pm: Identifying specific patterns in Genes in people with MS, so as to develop new diagnostic tools, treatments and better our understanding of the progression of MS: Dr. Kate O Brien, Genomics Medicine Ireland 2.30pm: Healthy Brain: Dr. Sabina Brennan, Trinity Brain Health and ADAPT, TCD. Tune in on Saturday, 22nd September from 9.45am. Click the link below and join the conversation. #MSLiving https://youtu.be/14FmBTXwHHM Originally published 18th September 2018
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!
Calling all bookworms! Sign up to the MS Readathon, Ireland’s largest and longest-running sponsored read for young people.
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