MS Ireland
Informing, Supporting and Caring for the MS Community
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‘Making Ireland the Best Place to do Multiple Sclerosis Research’ Report Sets Out Next Steps for the Improved Access to Treatments and Novel Therapeutics To mark World MS Day on 30 May 2018, MS Ireland, supported by Novartis, will launch a new report which is intended to help create ...
Published by MS Ireland on Wednesday May 30 2018 05:45 PM
MS Research Explored Please join us on World MS Day Wednesday, 30th May 2018 for a research information event in Tercentenary Hall, Trinity Biomedical Sciences Building (TBSI), Pearse Street, Dublin 2 @ 6.00pm - 8pm Agenda/Speakers - Launch of MS Research Report - How Clinical Rese...
Published by MS Ireland supported by Novartis on Tuesday May 29 2018 09:11 AM
The East Wicklow branch of MS Ireland invite you to the launch of First Flight, an anthology of poems and short stories by Greystones Scribblers (Boland Press). Greystones Scribblers were established by East-Wicklow branch of MS Ireland over nine years ago and First Flight is their inaugural...
Published by Greystones Scribblers (Boland Press) on Sunday May 27 2018 09:40 AM
Kiss Goodbye to MS, 18th - 21st May with Costa We are delighted to announce Costa are joining MS Ireland to help Kiss Goodbye to MS. The weekend of May 18th - 21st will raise awareness of Multiple Sclerosis and funds for MS research. Hope to see you there!! Drop in to a participating store near...
Published by MS Ireland/Costa Coffee on Thursday May 17 2018 11:37 AM
James Tracy, Leinster and Ireland rugby player, tells us about his sister Sara-Jane Tracy and how much she inspires him. “Family is a unique gift that needs to be appreciated and treasured, even when they’re driving you crazy, which happens a lot when you're the youngest and on...
Published by MS Ireland/James Tracy on Wednesday May 16 2018 09:42 AM
Date for your diary 11th - 17th June 2018 The 12th annual National Carers Week will take place from June, 11th to 17th. Events are happening nationwide to celebrate and recognise the role of Ireland’s Family Carers. There are twelve National organisations who are partners in t...
Published by MS Ireland on Saturday May 05 2018 08:39 AM
Greystone's Scribblers was established in 2009 by MS Ireland's East-Wicklow branch. They recently published their inaugural publication of poetry and short stories, First Flight. This is an inspirational book of well-honed stories that amuse, entertain and sometimes pull at the heart strings. This initiative was facilitated by Carol Boland with financial assistance from the Wicklow County Arts Office and we cannot thank them enough for their support. World MS Day brings the global MS Community together to share stories and raise awareness for everyone affected by MS. Greystone's Scribblers launched First Flight on this day, May 30th, with guest speaker Ava Battles saying "I have read this book cover to cover and some of the stories pulled at the heart strings, while others you simply had to laugh at them. I highly recommend this book to everyone to read". 100% of the profits will go the National MS Care Centre in Bushy Park. It is available to buy in Dubray Books in Bray, Supervalu, Sam McCauleys chemist and the Village Bookshop in Greystones, the Wicklow Bookshop in Wicklow Town, and also from boland-press.ie. You can also buy it online here or call the National office or the MS Care Centre for your copy.
Sunday 17th is Father’s Day and this week Keith Byrne describes the joys of being a Dad. Read on for how he’s balancing life tasks so he and his family stay healthy and how being open to challenges helps him build resilience while living with MS. Stress can be the catalyst for the onset of many illnesses. Coping with a full-time job, a young baby and a chronic illness all at once can certainly be described as stressful. This is never easy. Particularly when they can all be so demanding at the same time. I'm learning to take a different perspective so the demands don’t take over. Being a father to a 17-month-old can often mean restless nights, followed by a long day in the office then home to spend some (brief but) quality time with my son before his bedtime. Only to do it all over again tomorrow. It sounds tough and I suppose at times it is. At least if you apply effort into your work you might get the occasional thanks. Not so with a baby. Bringing things into perspective, the morning and evening times when I get to hang out with Oliver and see him showing off what he's learned is beyond comparison. His latest feat comes when asked “What does the lion say?” and he answers with a big "ROAR!". I couldn't be prouder! I find routine can be the best way to keep stress levels to a minimum. Time is such a precious commodity that it needs to be used wisely. I have yet to master this skill but if you have any tips please do share in the comments section below. Regimented tasks in our house, such as the weekly shop or cleaning floors each night before bed, are of given almost critical importance. And then stress levels rise when routine is broken. Actually, it's helpful just to take a step back, realise that it's not the end of the world and take another view. Once he's happy and healthy, that's the priority. I need make sure his Daddy is happy and healthy too. MS can bring with it pain, fatigue, uncertainty and many other symptoms. Because of this I've started to challenge myself more. I'm almost putting myself in stressful situations so I can learn to cope with it better. Whereas before diagnosis I would have avoided them at all cost. I plan on running the Dublin Half-Marathon in September and now I've also signed up for the Full Dublin marathon in October. For me staying active and eating healthy are just as important as medication when it comes to tackling MS. Keeping a determined and positive mindset will definitely give me a better chance of staying relapse free. It should also help me sustain a happy and healthy lifestyle. Although with MS this is never guaranteed. Those thankless and sleepless nights, were you just feel you can't do anything right for your child, can be testing. Luckily those nights have been few and far between. But they can have a knock-on effect and leave me exhausted throughout the days that follow. Still, those sleepless nights can lead into playful days. Those rosy red cheeks and teary eyes have led to big white teeth. And those cries of frustration at him not being able to say what he wants led to a voice that now says "Dad"; and that means more to me than thanks ever could. I wish every MS Dad a great Father’s Day and look forward to reading your comments. Keith has set up a charity page for the marathon for anyone who would like to support him as he raises funds for MS Ireland: https://give.everydayhero.com/ie/half-marathon-for-ms Keith also writes a blog where he shares on his life: https://keifib.wordpress.com/
Next week, 11th to the 17th June, is Carer’s Week in Ireland. We’re delighted to have Guest Blogger Gemma Donnelly Cox writing about being a Carer and how she balances life in the ‘here and now’ while also planning for the future. Caring, for me, is about enabling and empowering my husband to live the life of his choosing to his highest potential. Simple, eh? I’m not so sure. Over and over again, I am torn between goals that, at times, conflict. And I’ll bet this happens to every carer; maybe not the same goals but tension nevertheless. Currently, the ones that preoccupy me have to do with timing and with attitude. When I say timing, I mean whether to focus on the present or the future. A whole lot of enabling and empowering is about making the most of every day; doing today’s work today. Right now, I’m typing this blog and Alexis, my husband, who is quadriplegic with progressive MS, is using voice control software to work on his computer. Our son has just left the house to go bouldering at the climbing gym up the road. We are all enjoying the here and now this afternoon. Much of the time, however, I feel as though my focus is planning for the future, leaving little room for the present. So much thought goes into what I know lies ahead and also to planning for the unknowns. What if Alexis’ voice starts to weaken further and he can’t use voice control software? Should he be using eye control now, just in case? But what if his eyesight starts to fail? Worries about the future can rob you of ‘the now’ as you flail around trying to prepare for what might emerge. But if you only stay in ‘the now’, you could very well end up not being ready when one of these MS issues suddenly rears its head. Right up there with timing is attitude. It seems to me that so much of what is joyous in life is about knowing when things are good, celebrating them and being grateful for them. Like right now blogging about how it feels to be a carer. A lot of the time, however, gratitude for the good things can be in tension with putting mental energy into staying vigilant and being ready to advocate. For example, Alexis was recently invited to a dinner with people who know a lot about MS. I was looking forward to going with him and slacked up on my usual advocacy of making his requirements clear to the hosts. I figured that people in the know would get it right. Wrong. The hosts invited a quadriplegic guest seated in a large wheelchair to a venue where the tables were way too low for his chair. The path to the (too small) space at a table- in the middle of a room, full of seated diners- was impossibly narrow. It does not have to be like that folks! It’s hard to be grateful for a nice night out when your husband can’t reach the table and your advocating would have made it different. When I feel I’m getting the balance right managing the tension between timing and attitude, I am far happier and more confident in my Carer role. But before I sign off, I’d like to add one more tension, the one that can arise between caring and self-care. During Carer’s Week, we’re reminded that Superwomen and Supermen stay sharper when they take care of themselves. I was reminded of this back in the autumn when I was away for the weekend by myself (a super duper self-care step) and I came across a young couple in their 20s. The carer in the partnership was a real Wonder Woman. But she was wrecked tired, more tired than I remember being at her age and stage. I had time on my hands and tried to help out. She knew I was up to the job but she simply couldn’t let herself stop. Carers, none of us last forever but if you want to be in for the long haul and really make a difference for your loved one, you’ve got to take care of yourself too. For many carers, I guess that’s the hardest thing. Gemma and Alexis Donnelly live in Dublin with their son Finn and Labrador Retriever, Elmo. In 2016, Alexis joined the Scientific Steering Committee of the Progressive MS Alliance. His carers have supported him to fulfil his role in the Alliance. For more on the Progressive MS Alliance and the exceptional work that it does in pursuit of its aim to understand and overcome some of the biggest barriers to treatment development for progressive MS, see www.progressivemsalliance.org
This week Niamh McCarron shares her experience of having MS and working. Read on for her story of working and striving to stay professionally active and financially secure. As I write this blog post I am on my way to a conference for my day job. This is a good example of how my work and MS life are intertwined. I am often “robbing Peter to pay Paul” timewise, energy-wise and pain-wise. The truth is, most people have to work, there are very few of us who have the resources to pack it all in and retire at 30 or 40. For people with MS, I think most of us plan (and hope) to work for as long as we can. Of course as illness progresses, this choice can be taken away from us. I am writing this post from the fortunate position of still being well enough to work,. I’ve blogged about my MS Fears before. One of the things I am afraid of is having to stop working. I’ve been working in the same company for more than a decade and have built a solid career for myself. I work hard, I enjoy what I do and I am part of a great team of people. Giving up work would have a massive impact on my household financially, but it would also take away my independence and part of my social life too. I’ve had to make some adjustments over the years and I’ve occasionally had to ask work to accommodate me where possible, and reasonable, to do so. Because I was diagnosed while working here, my colleagues have known about my MS as long as I have. I think that has helped. I didn’t have to tell them about it, it just became part of me and my life. I understand why others might feel that they can’t or don’t want to disclose their MS to their workplace. It’s a very personal choice to make. For me it would have been an extra layer of pressure to deal with, so I am glad they all know. Plus I am a blabber mouth and have blogs all over the place. It’s not exactly something I can hide at this stage! In 2016 MS Ireland launched a set of Employment Resources to support people with MS and their employers. I encourage people to have a read through them, particularly if you are considering disclosing your MS at work. There are some great tips from others with MS as well as practical advice on what you can reasonably expect from your employer (and what an employer can do in terms of reasonable accommodation for a member of staff with MS). I also think it’s great to highlight that so many of us are working away in our chosen jobs. MS doesn’t always mean the end of life as we know it. I plan to still be here in the next 10 years, hitting the snooze button for “just 2 more minutes” and dashing about the place trying to juggle work, home and other commitments. I’m determined to try, for as long as possible! Links to Employment resources: https://www.ms-society.ie/blog-articles/2015-launch-of-employment-resources Working With MS - Employment Resource for People With Multiple Sclerosis Working Out MS in the Workplace - A Practical Toolkit for Employers Multiple Sclerosis and Employment - Facts and Figures
‘Making Ireland the Best Place to do Multiple Sclerosis Research’ Report Sets Out Next Steps for the Improved Access to Treatments and Novel Therapeutics To mark World MS Day on 30 May 2018, MS Ireland, supported by Novartis, will launch a new report which is intended to help create an MS research landscape that will put Ireland at the forefront of MS research, innovation and therapeutic application.[i] The report aims to support researchers and provide people with MS and the public with a better understanding of the research process and ongoing research. Some of the recommendations include the establishment of an MS Research Community, improved data and information sharing, greater involvement of people living with MS, potential funding models, and improved dissemination of research findings. The community will help overcome obstacles to research such as gathering samples, establishing a biobank and a patient register. The report defines a number of key asks as follows: Creation of a Facebook Workplace platform where researchers can contact each other, share information and seek opportunities for collaboration; Establishment of a Public Patient Involvement (PPI) network of people with MS who researchers can contact for assistance with designing studies and grant applications; Raising awareness with researchers that MS Ireland is available to partner on funding applications; Seek opportunities with academia and industry to establish an MS registry; Increasing state investment in medical research, including increasing funding for the Medical Research Charities Group and the Health Research Board Joint Funding Scheme for medical research charities; Establishment of an MS patient registry and the development of a national policy framework and infrastructure for the development and maintenance of patient registries; Prioritising implementation of The Health Information & Patient Safety Bill and The Human Tissue Bill. “Given the prevalence of MS here, Ireland should be leading the way in MS research. The report launched today gives us a blueprint of what needs to be done,” says Ava Battles, CEO of MS Ireland. “As a first step, we want to establish an MS research community collective to bolster Ireland’s current research strengths to obtain more funding and improve research visibility. While the top priorities in MS research are currently being addressed, this could be done better if the MS community addressed them as a collective.” Dr Claire McCoy, RCSI, said, “Research offers people living with MS real hope for improvement both in their treatment but also in their quality of life. I am delighted to support MS Ireland in speaking at their public meeting that will help bring people up to date with progress that is being made. The report also lays out a clear pathway that will help to overcome some of the issues that have been faced and I would urge people working in the treatment of MS to get involved as the recommendations are rolled out.” Commenting on the launch of the report, Loretto Callaghan, General Manager & Country President, Novartis Ireland said, “We are committed to working with MS Ireland to help raise awareness on the importance of research. Research plays a major role in progress so understanding the barriers that exist is the first step in devising a plan that will help to overcome these issues in the future. We believe that Ireland can become a leader in MS research and look forward to collaborating further with MS Ireland to deliver the recommendations of the ‘Making Ireland the Best Place to do Multiple Sclerosis Research’ report.” This report was compiled following a meeting with a mix of stakeholders interested in MS research in Ireland, including patients, doctors, scientists and nurses and was facilitated by Novartis Ireland in November 2017.
World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by MS. Getting involved is easy! See how you can make a difference!
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26 June 2018: Physiotherapist designed and led exercise programme for people with MS.
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