MS Ireland
Informing, Supporting and Caring for the MS Community
Highlights from the day MS Ireland hosted the annual National MS Conference on Saturday, 22nd September in the Radisson Hotel, Athlone, Westmeath. We also hosted a gala dinner on Friday evening during which the annual awards ceremony was held. Watch highlights on the day: ...
Published by MS Ireland on Saturday October 20 2018 10:54 AM
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
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
Apply now to become a Director We are currently seeking candidates to go on to our panel of potential Board members. Members, branches, council, the board and staff may propose candidates. All nominations must be proposed and seconded by members. The nominating committee review the applica...
Published by MS Ireland on Friday March 11 2016 01:46 PM
Care Alliance Ireland launch factsheet for carers As part of National Carers Week 2015, Care Alliance Ireland launched a four-page factsheet on Family Carers in Ireland. The factsheet provides important information pulled from the 2011 Census and other sources. This information is provided in sh...
Published by Care Alliance Ireland on Friday July 03 2015 09:45 AM
MS community shouts out ‘Together we’re stronger than MS’ to announce World MS Day 2015 Multiple Sclerosis Ireland today announced World MS Day 2015, which will take place Wednesday May 27th under the banner ‘Together we’re stronger than MS’. Ireland’s w...
Published by MS Ireland on Friday May 08 2015 04:44 PM
This week Grace Kavanagh writes about what the International Day of People With Disabilities means to her and what we as individuals understand about living with a disability. I’ll forgive you if you weren’t aware that there was such a thing as International Day of People With Disabilities. I wasn’t either before some research. It is an initiative set up by the UN in 1992 to promote understanding of disability issues and to raise support for those with disabilities to enable them to participate equally in society. It is held yearly on December 3rd and the theme for this year is “Inclusion is for everybody”. The day is recognised at the UN headquarters in New York with organisations and groups around the world encouraged to hold their own events. I love the idea of social equality but think in reality we have a long way to go. Raising awareness is one thing but raising understanding and empathy is quite another and this is where I think the focus should be. So what do I as a person with disability think the International Day of People With Disabilities should include? I don’t think any one person can understand all the challenges people with differing disabilities face and I certainly can’t speak for everyone. I do however think that we all need to think a bit more about other people and try not to be entirely caught up in our own worlds. We have all been guilty of unknowingly causing issues for others by our actions so here are some things to consider in our everyday lives that might have an impact on people with disabilities. ● Viewing things from the perspective of the person with a disability would help us all to see how our actions can impede others. It could also help us to be less irritated or frustrated when we understand the challenges the other person is facing. ● Experiences that give an insight into the life of someone with a disability can really boost understanding. For example the MSunderstood cafe gives people the opportunity to view the world from the perspective of someone living with MS. I’ll be sending my husband when it comes back to Dublin! ● In a similar way, I know of a charity for the visually impaired that requires employees to spend time wearing glasses that distort vision and use a wheelchair so they understand the difficulties people they work with may have. ● I taught computing to a lady with hearing difficulties. She had a sign language interpreter who enabled her to be an equal participant in the class. I learnt to address my comments to her and not her interpreter, just as I would with any other member of the class. ● Think before you park your car! Parking on pavements or up on the kerb leaves no safe route for people in wheelchairs, while parking in disabled bays when you don’t need to means a person with a disability can’t use the facility. ● Don’t get me started on the pavements in Dublin! They are a hazard to everyone but in particular those with mobility issues. Try not to add to the problem by leaving obstructions like bins on the path. Disabilities aren’t always visible. You don’t know what someone else is coping with just by looking at them. They could be living with chronic pain but look fine. Try not to judge what you don’t know. Check out Grace’s blog, www.mycrazymslife.com for her perspective on living with multiple sclerosis. Join in the activities of the UN International Day of People With Disabilities click here
Living with a Neurological Condition in Ireland Neurological Alliance of Ireland (NAI) have launched a new survey "Living with a Neurological Condition in Ireland" to examine the practical issues faced by people with neurological conditions & their families. You can complete this survey if you are an adult (over 18 years), diagnosed with a neurological condition or if you are a family member currently caring for an adult with a neurological condition. The survey should only take 10-15 minutes to complete and your replies are completely confidential. The closing date for responses is Friday 14th December 2018. Get in touch If you have any questions about completing the survey, you can e mail sbradley@nai.ie or call (01) 8724120. originally published 9.11.2018
This week Aoife Kirwan writes about the upcoming event for Young People with MS on 29th November 2018 (6pm-8pm) in the Davenport Hotel, Dublin. Register for the event here For almost eight years I have been living with the knowledge that I have MS. My diagnosis came at a time when I was just getting started in adult life. Years of education were behind me and I was in the final months of my degree. Prior to my diagnosis, I had a very clear vision of what I wanted in life, what I wanted to do, to be, to become. This moment in time changed everything for me. The future I had envisioned for myself was now unclear. The main symptom that I had was optic neuritis in my right eye which left me with just about 2% vision in that eye. I had been working towards becoming a secondary school art teacher. I felt like I had to say goodbye to that idea, as I didn’t feel it would be a secure enough given the issue I had with my sight. I felt like I was at a crossroads. It was still early enough to change my mind about the best path forward but that didn’t make it easy. The promises that I had made myself were destined to remain unfulfilled. I feared what was to come because for years I had been looking in one direction and this diagnosis forced me to look around. It made me uncomfortable. The way I felt about myself and the way I felt the world saw me, changed. My sense of identity was shaken. I didn’t think a support group would be my kind of thing. I didn’t like the diagnosis; I was all about trying to be positive and felt that the niggling negative thoughts might grow stronger if I saw other people who were more seriously disabled by MS than me. What I didn’t realise then was that I needed connection. To speak to others my age who were living with MS. I needed information that was relevant to me, support around decisions that we often come up against in early adult life like education, relationships, self-acceptance. Early adult life sees people lay the foundation blocks for their future and I needed support with making my foundation solid. Next Thursday, November 29th MS Ireland, in collaboration with Novartis, is hosting MS Explored, an information and support event for young people living with multiple sclerosis (18-35). Speakers include Moira Tzitzika who will talk about Relationships and Intimacy. Moira has a PhD in Psychology and specialises in Disability Counselling and Sexual Medicine at the European Society of Sexual Medicine. Psychologist Karen Belshaw, founder of Stress Management Ireland, will speak on Mental Resilience and past-president of the Union of Students Ireland, Michael Kerrigan will show us Road-mapping for Success. This event will take place in the Davenport Hotel, Dublin from 6-8pm. A live stream will be available for those who are not able to attend in person. Students unions around the country have been incredibly helpful in organising on-campus hubs where the live stream will be shown. Questions for the speakers can be sent in by direct messaging our social media platforms. The event is free to attend but please register using the following link: https://www.eventbrite.ie/e/ms-explored-meeting-tickets-52707199653 This is a great opportunity for young people living with MS to meet with their community. Connecting with others who are at a similar stage of life and navigating similar issues can be a very empowering experience and I look forward to seeing you there.
Monday, November 19th is International Men’s Day, a celebration of the positive value men bring to the world, their families and their communities. Today Keith Byrne shares his experience and talks about ‘manning up to MS’. I've been lucky to share my life with some great men. My Dad, my Granddads, extended family members, colleagues and friends. I think that's what made it so hard for me to initially open up about my MS diagnosis. It was as if I didn't belong in the same category as these men that I idolised. I in no way tick any of the pre-requisites society associates with being a ‘manly man’. I'm not the strong/silent type or ‘tall, dark & handsome’ at 5ft. 4 and bald. There is also the statistic that more than twice as many women are diagnosed with MS than men. I was a gamma male, never to be an alpha. Yet being diagnosed with MS awoke a strength in me that I always knew was there yet I never felt I had a reason to channel it. Once I came to terms with my diagnosis things started to improve both mentally and physically. This didn't happen overnight. It took a number of months as well as discussions with my MS nurse, nutritionist and my close family too. Eventually, after my first ‘MS Newly Diagnosed Day’ I gathered the strength to come out of the MS closet. Talking about my diagnosis is something I've learned to be very comfortable with. I've since done newspaper and radio interviews. I also started seeing a counsellor. Over the summer, I took part in a video for my job to promote mental health awareness. As part of the promotion for the video, I was asked to speak to a group of approximately fifty of my peers (most of whom I'd never met in person). Each scenario has been a massive challenge as each time I felt totally out of my comfort zone. I can develop an inherent shakiness in these circumstances and I'm conscious that might come across when I'm talking to a crowd of people. Yet I find each time I challenge myself, I’m a little less nervous and little more brave the next time around. It can't be underestimated how much stress affects our health. I'm intentionally putting myself in situations where my confidence is stretched to its core. It might sound like I'm bringing unnecessary burdens upon myself but there is method to the madness. I feel that, by deliberately challenging myself, I might be that little bit more prepared for situations that are out of my control. I wouldn't say I do this on a daily basis. Ultimately, I have relapse remitting MS From time to time I need a break away from everything. Outside of the daily challenges caused by MS, like fatigue and brain fog, my biggest challenge to date was the Dublin Marathon at the end of October. In the 3 and a half years or so since my mobility and vision returned back to a somewhat acceptable level I've been trying maintain an active lifestyle. A couple of lunchtime runs a week and maybe a longer one at the weekend led to me signing up for the marathon. The crowds of people out showing their support from the outset of the 26.2-mile trek was so uplifting. I especially felt humbled when I was struggling around mile 20 and I got a pat on the back from a guy as he ran past wearing the same TeamMS t-shirt as me, "Come on pal not long to go, you can do it". Thanks for the motivation and I'm proud to say I did do it! On the way into the marathon I met a man from Cork who was in Dublin for the day just to run it. We shared a taxi into town. He told me he was 66 and on his 313th marathon. An unbelievable achievement by any means but he also said he only ran his first one in 1999. I'm sure he had his reasons for starting something so taxing relatively late in life and it made me think; we all have our own path to follow and sometimes we get knocked off track. MS has certainly changed the course of my path. Perhaps, in some strange way, it's helped point me in the right direction. I no longer feel inferior to the men who inspire me. I have gained the awareness to realise they already see me as their equal. To all the men out there, fellow MSers, Carers, well-wishers and generally sound lads I'll leave you with this quote by Liverpudlian songwriter John Power: "Someone will always be more than I'll ever be so then I'll be myself"
Now CLOSED for applications The IPPOSI Patient Education Programme 2019 is now open for applications (Deadline for receipt of applications midnight on Sunday, November 18th 2018). The programme delivers training for patients, carers and advocates living in the Republic of Ireland on health research and innovation. This includes education modules on clinical trials, medicines regulatory affairs and health technology assessment. The programme is designed to enable and empower more patients and patient advocates to work effectively with Irish and EU-level health research & technology partners, agencies & authorities. Further details on the programme and how to apply are available here. Potential candidates may be interested in these short videos, which capture student feedback on last year’s pilot programme and their reasons for taking part.
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