MS Ireland
Informing, Supporting and Caring for the MS Community
This week Declan Groeger channels his inner Ronan Keating! From roller coasters, to walls and walking, here’s his take on dealing with balance issues and never, ever, giving in. There I was strolling along not really going anywhere, dawdling, wasting a bit of time when I suddenly wo...
Published by Declan Groeger on Thursday September 07 2017 11:00 AM
This week from the MS & Me archives series - Declan Groeger discusses MS guilt. Greetings fellow travellers on the long, winding, pot hole strewn road that is Multiple Sclerosis! Have you ever sat at home doing absolutely nothing while your significant other was busy doing housework or...
Published by Declan Groeger on Thursday July 27 2017 10:45 AM
Happy New Year from the MS & Me Blog Team. Here’s what 2017 looks like from here... The media seems to love looking back at the end of each year. Reflecting on the news, the sport, the tragedies, and the triumphs. Your MS & Me Blog team take a different approach. When we get ...
Published by Trevis Gleason on Thursday January 05 2017 11:00 AM
This week Professor Sabina Brennan from the Neuro-Enhancement for Independent Lives (NEIL) Research Programme in the Institute of Neuroscience at Trinity College Dublin asks us to consider our brain health. We all know people who are really resilient; people who seem to manage to ‘ke...
Published by Professor Sabina Brennan on Thursday November 24 2016 11:00 AM
'Coping with MS isn’t always easy, but you do have a choice' Life… Clichéd as it seems, dealing with life is what strong people do, right? You put on your army gear, ramp up the volume of your favourite tunes and tell life to get out of the way because you’ve got things...
Published by Willeke Van Eeckhoutte on Thursday July 07 2016 10:00 AM
I hate seeing documentaries or movies about tornadoes; they absolutely terrify me. There’s a recurring nightmare I have of being caught in a barren landscape at dusk, howling tornadoes circling the scene. Terror takes over with the thought of what is to come. I don’t have to delve ver...
Published by Helen Farrell on Thursday June 23 2016 11:00 AM
Hindsight is a wonderful thing. Not sure who said that, but they knew their stuff. Looking back, I can now see that I had MS symptoms long before I was diagnosed. Lots of things that I couldn’t quite put my finger on, which niggled away at my thoughts and feelings. I think I can trac...
Published by Niamh McCarron on Thursday August 20 2015 09:30 AM
Sometimes we don’t see things as clearly, some things we see more sharply. One thing that is for certain, MS has changed the way I see things… Multiple Sclerosis – the insidious thief of a disease that it is – can and has taken much from me. It has take...
Published by Trevis Gleason on Thursday July 09 2015 09:30 AM
As a follow on to my last blog about eating healthier, I decided I would make more of an effort to increase my fitness and mobility, which has taken a back seat for a long time! To start, let’s call a spade a spade... I am lazy... I have never been a fan of exercise, apart from swimming. S...
Published by Niamh McCarron on Thursday April 16 2015 11:02 AM
One of my favourite quotes by Lewis Carroll is “I can’t go back to yesterday because I was a different person then.” I couldn’t agree more. Life without a chronic, degenerative illness is often compared to a rollercoaster ride, but it certainly is a wild one when diagnose...
Published by Willeke Van Eeckhoutte on Thursday March 05 2015 12:03 PM
A Health Research Board funded study called ‘Patients’ Preferences for Health’ are looking for volunteers You are invited to participate in a study which will explore “Patients’ Preferences for Health”. In general, people have preferences of being in one state of health over another. This can often be a preference to have good health over bad, or to be in good health for so long and to be in less well health for a shorter period of time. By asking the public in Ireland to make these decisions or trade-offs we can say something about the general preferences of people in Ireland. Preferences gathered in this way are often used to guide choices around decisions in relation to health and using preferences from the general public is deemed to be a fair way of deciding on how to assign healthcare resources. However, it is likely that a person’s experience of being in a health state will alter their preferences compared against those who are only imagining being in that state. As such, this work will examine the differences between patients with Multiple Sclerosis (MS) valuations of health states, and those of the general population to see if this is actually the case. Before you decide whether you would like to be part of this research study, it is important that you understand why we are carrying out this research and what it will involve. Download participant information Get in touch If you are interested in helping with this study, please contact Dr. Stephen Erskine at erskines@tcd.ie
NCPE report The National Centre for Pharmaco-economics (NCPE) have completed their evaluation of Ocrelizumab for the treatment of adult patients with early primary progressive Multiple Sclerosis (PPMS), and have sent the final report to the HSE CPU. The web summary is now available on the National Centre for Pharmacoeconomics website. >> Read more The NCPE report recommends that ocrelizumab for the treatment of adult patients with early PPMS not be considered for reimbursement. MS Ireland have secured a meeting with the Minister for Health, Simon Harris on October 25th in relation to the issues of access to medicines. Related articles March 2018 >> January 2018 >> Access to Medicines Campaign Handbook >>
Before Budget 2019, Helen Farrell shares her opinion on the financial challenges of living with MS and how the Irish State can truly support people. Our government ministers have an unenviable task in preparing our 2019 budget. Not only do they have to cover existing commitments but they also must plan for future contingencies and emergencies. Ireland has never been good at investing properly in the future and is bedevilled with transport, housing, education, social welfare and health systems that are full of historic quick-fixes and panicked responses to crises and outrages since the foundation of the State. Investing in proper preventative planning usually takes more resources and a longer-term view than ever seems achievable to our governments; to the despair of many. It’s understandable that buying the approval of voters and ensuring a positive next election is very important for political parties; few go into politics to be in opposition. Our elected representatives have a duty to balance the health, housing, education, welfare, transport and environmental needs of Irish citizens with the money they have available, and to enhance people’s lives, not necessarily their pockets. People with MS would love our politicians to sit up and notice that our neurological services are woefully underfunded and do not compare at all favourably with the rest of Europe, or indeed globally. MS is something that arrives in our lives uninvited and makes itself at home for life, often damaging our earning potential and costing us in so many ways across our lifespan. With access to good healthcare, medication, rehabilitation and support, life can continue for many of us in a productive way (albeit changed) but only if we receive the proper support. It is false economy to stint on these supports. The more support we have when living with MS, the more we can continue to remain engaged with life, earning and contributing financially and in voluntary ways and putting less of a financial burden on the State. It makes good financial sense to invest in MSer’s and conversely very poor judgement to limit services and supports. A severe MS-relapse or disease-course is far costlier for our healthcare, social welfare and other systems to deal with than the optimal situation of keeping a person with MS as healthy as they can be. At a personal level I am still angry at the election promise reneged on in 2013, to give all people who hold the Long-Term Illness Card an automatic GP Visit Card. It would have made life much easier for us all with MS. Keep us well and we’ll be more productive, for longer. MS Ireland’s pre-budget submission makes for sober reading (read here). The key asks of MS Ireland for Budget 2019 involve proper investment in neurology services, neurorehabilitation, community services and housing adaptation, as well as automatic entitlement to a GP Visit Card. Although our Social Welfare services can provide good support for those of us who can’t work full-time or at all, more needs to be done to “make work pay”, although I personally dislike that phrase. There’s a whiff of the opinion that people who access Social Welfare are choosing not to work when they weigh up the financial “benefits” in favour of a life of State support. Nothing could be further from the truth for most of us. We are trying to hang on with grim determination of any remnant of our former pre-MS working lives, reinventing ourselves, constantly adjusting and trying to outwit this disease. Another area that MS Ireland would like addressed is the amount of income disregarded when applying for Medical Cards. In people with MS on lower incomes, the disregard should be far higher, due to identified higher costs of living with MS. It is an exciting time in terms of new treatments emerging for MS. There have been quite a few new disease-modifying medications licensed in recent years that provide greater efficacy against MS, and the promise of more to come. New and innovative medications cost money and the government need to ring-fence spending to cover this for the future. All in all, a lot for our government to consider. But short-term planning benefit nobody and makes no prudential sense in the long-run. What we need now is our government to focus on playing the long game; just like MS does with us.
Briefing in Leinster House Today, MS Ireland presented the MS Care Centre Business Case to TDs and Senators in Leinster House. We were overwhelmed by the support shown by your local representatives at today's event. In a video released to coincide with the presentation, Mark Mitchell shares why further investment is important and the services offered at the Care Centre. Watch here 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 due to the increased demand on the service. This would see the Care Centre open 350 days per year from 2019 and provide an extra 1,128 bed-nights annually. MS Ireland will continue to campaign to secure additional funding to open our respite service 350 days per year. Thank you for contacting your local representatives. Your involvement and action makes a difference. #ISupportMS
This week Rosie Farrell shares with us what it is like being a woman with MS. There is one representation of women in the media; thin, beautiful and definitely not disabled. In fact, as representations go, women living with a disability are invisible - a bit like the way our illness often is. In my early 20s, I was career-driven and exercise obsessed. I wanted it all and I worked the crazy hours and exercised during the others in a bid to earn those labels. My idea of a work-life balance was to spend my spare hours on a cross-trainer. I wanted that perfect, strong female body we see all over social media. I analysed every inch of my flesh and no matter how much I exercised, how much the numbers kept reducing on the scales, I still hated how I looked. Why would I think otherwise? I didn’t grow up in a world that taught women to love themselves. Then I developed a disability to go with it and as MS slowly crept in to steal my mobility, exercise turned to something I did for how it made me feel and not for how it would make me look. Recently, I put on my jeans and discovered they were too tight. I was ecstatic because I realised - after spending so long using a wheelchair and a stick and being unable to walk far, having watched my weight plummet and my muscles slowly waste away - the tight jeans meant that through all the physio and swimming, I finally had muscles again and that was something to celebrate. As I gained muscle, the numbers on the scales increased and before panic could set in, the scales found their way to the bin and my confidence as a woman soared. As women, all too often we are defined by how we look, and it took me getting MS for me to stop defining myself that way too. Now, I look in the mirror at my untoned body and I hug myself because this body has been through a lot and it deserves my love. I deserve my love. I fight chronic pain and fluctuating mobility levels and yet it’s still MY body. It’s mine to be proud of and to celebrate and to get frustrated with. It is not society’s to label. Exercise is sold to us on the grounds of how many calories we can expect to burn in a session. Fashion is sold to us as clothing only those with the most toned bodies will look good in. And disability aids are sold to us as something only older people need. At first when I started using mobility aids, I felt like I no longer fitted in anywhere. Where was I represented? Because I now used a stick, did that mean I was no longer stylish? As a woman with MS, I’ve had to challenge a lot of society’s labels. And as I settle into life as a wife and I move into a new chapter, those labels expand. I would be ignoring the elephant in the room not to touch upon the topic of having children. That’s something that will only be possible for me if my pain and spasticity could one day be managed on a minimal amount of medication. I’d be lying if I said it doesn’t worry me but it’s not something I’m physically in a place to challenge, and that’s not to say I won’t ever be. I’m learning that because I’m a woman with MS, a woman with a disability, I am also still a woman with a career, I’m still sexy and beautiful despite the mobility aids and the lack of high heels. I am still a valuable human being if I end up not being able to have children. I still have a voice that deserves to be heard. In fact, as women, we are far more than the many labels society pins on us. And as a woman with MS, I’m finally learning to value me. And a woman who believes in herself is an unstoppable force. That’s a label I’m happy with. Rosie Farrell is a sub-editor and designer with Irish Country Living and the Irish Farmers Journal. She blogs at www.sherunswithms.wordpress.com
Calling all bookworms! Sign up to the MS Readathon, Ireland’s largest and longest-running sponsored read for young people.
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