MS Ireland
Informing, Supporting and Caring for the MS Community
Sensory Café Captures Customers ‘Experiencing’ Multiple Sclerosis (MS) Symptoms Captivating video unveiled to show the day-to-day impact of living with MS A sensory-experience café popped-up on Exchequer Street, Dublin 2 on Wednesday, 28th March, to give customers a tr...
Published by MS Ireland/Roche on Friday March 30 2018 12:19 PM
MS Ireland publishes new report on disease modifying therapies In September 2017, MS Ireland conducted a survey on the perspectives of Irish people with MS on disease modifying therapies (DMTs). 236 people completed the survey. Today (Friday, 29th March 2018) we published a report of the finding...
Published by MS Ireland on Thursday March 29 2018 09:00 AM
'Words for the newly diagnosed from people living with MS’ – new book by Joan Jordan MS & Me Blogger Joan Jordan has produced a new book for people newly diagnosed with MS, called ‘huManS' – Words for the newly diagnosed from people living with MS’. The book wa...
Published by MS Ireland on Wednesday March 28 2018 11:53 AM
Minister for Health Simon Harris has agreed to meet with MS Ireland regarding ocrelizumab MS Ireland welcomed the news this morning (Wednesday, 28th March 2018) that a spokesperson from the office of Simon Harris has agreed that the Minister will meet with representatives from the organisation &...
Published by MS Ireland on Wednesday March 28 2018 10:20 AM
Due to the weather warnings from Met Eireann the Regina Nathan concert scheduled for Friday evening (March 2nd) has been postponed. A new date will be announced shortly. For more information please contact Caitriona Hughes: caitrionah@ms-society.ie An evening of music and song Longtime MS...
Published by MS Ireland on Tuesday February 27 2018 09:35 AM
Save the date MS Ireland will host the annual National MS Conference on Saturday, 22nd September in the Radisson Hotel, Athlone, Westmeath. Stay tuned for updates...
Published by MS Ireland on Friday February 09 2018 10:31 AM
Recruitment for Pilates research project is now closed Karl Fleming, a Structured PhD student, along with Dr. Matthew Herring (Department of Physical Education and Sports Sciences) and Prof. Susan Coote (Clinical Therapies Department) of UL are seeking your participation in a research project ex...
Published by MS Ireland/University of Limerick on Wednesday January 24 2018 10:33 AM
MS Ireland has published our Advocacy Strategy for 2018, which details the actions we will be taking this year to try and address each of our advocacy priority areas. You can download the strategy here Get in touch For comments and questions please contact Harriet Doig, Information, Advocacy an...
Published by MS Ireland on Thursday January 18 2018 02:35 PM
Roche’s ocrelizumab receives licence in the EU for relapsing forms of multiple sclerosis (RMS) and primary progressive multiple sclerosis (PPMS) Ocrelizumab is first and only approved disease-modifying medicine for people in EU with early PPMS Dublin, 12 January 2018: Roche announced toda...
Published by Roche on Monday January 15 2018 12:13 PM
More than 9,000 people are living with Multiple Sclerosis in Ireland. Multiple Sclerosis (MS), meaning ‘many scars’, is the most common disabling neurological disease affecting young adults in Ireland. MS impacts the motor, sensory and cognitive functioning of the body and is usually ...
Published by MS Ireland on Wednesday January 03 2018 11:55 AM
This week Christina McDonald goes deep into the experience of being diagnosed with MS. From being scared and grieving, she’s learned to doing things differently. More than ever before, she’s chasing her dreams. There was something in the words “You have MS” that filled me with mixed emotions and changed my life. The different stages of grief I went through after my diagnosis somehow helped me come to terms with MS. If you are newly diagnosed, it’s important that you know that these feelings are normal. Yes, they may recur, but things do get better. There have been days where I have felt chronic pain and others where I have sat feeling sorry for myself. And there have also been good days. I’ve learned to accept that my body has new limitations. I am still the same person and am still able to do things. I am just mastering new ways of doing them. My diagnosis is not what defines me; it has opened a new chapter in my life. It has given me a new outlook on life and I know I want to live it to the fullest of my potential. After my diagnosis, I started to put my health into perspective. I began looking after my physical and mental wellbeing and started to eat healthier. I feel that I am one of the lucky ones - I’m fortunate enough that my body allows me to do gentle exercise. It’s important to remember to listen to your body and what it is telling you. If you are having a bad day where you need to rest, don’t be afraid to use your voice. The people who love and care for you will understand if you have to cancel plans due to fatigue or bad symptoms. My diagnosis has given me a thirst for a better life and sparked a drive in me to pursue my dreams and ambitions. I know MS couldn’t stop me from achieving my goals but it has definitely changed my perspective on things, especially chasing my dreams. I learned not to worry about the things that aren’t actually important but rather to appreciate the little things that are. I have struggled since my diagnosis but it has also put things into perspective for me. I decided to return to education to do my Masters in primary education and I honestly don’t think I would have had the courage to do it if it wasn’t for diagnosis. Being given an MS diagnosis is tough and it can be scary but I have tried to use it to encourage me rather than frighten me. Research and educate yourself on MS using the wealth of material that there is available. Don’t rely on Google to tell you what’s going on! Educating yourself gives you the knowledge to educate your friends and family and to also spread awareness. If you have recently been diagnosed with MS and are worrying about what happens next, remember MS is not a death sentence. You can still do the things you want to do in life, you’ll just be doing things a bit differently.
Kiss Goodbye to MS for research into Multiple Sclerosis and vital services Multiple Sclerosis Ireland, with the support of TV presenter Lisa Cannon and two young women living with MS, Rosie McCormack and Sara-Jane Tracy, is calling on people to help Kiss Goodbye to MS raising funds for MS research and essential services. Throughout the month of May, supporters are asked to ‘go red’ and to Wear, Dare and Share: to wear red or hold a ‘red day’, dare to get sponsored for an MS Ireland sky dive, and share with friends and family to spread the word. For more information visit www.kissgoodbyetoms.ie Kiss Goodbye to MS is about raising awareness of Multiple Sclerosis and supporting MS Research as well as funding vital services that reduce the impact of MS including physiotherapy, counselling and newly diagnosed seminars. MS Ireland will hold the first MS Research Ball on Saturday, May 26th 2018 as well as a Red Lab Coat Day in research laboratories around the country, reinforcing the research message for Kiss Goodbye to MS. TV presenter Lisa Cannon is proudly supporting the Kiss Goodbye to MS campaign: "I'm delighted to be part of this important cause to raise funds for MS research and services, to help people living with MS. Three times more women than men are diagnosed with MS, with most being diagnosed between the ages of 20 and 40. Please go red this May and wear, dare and share to show your support." Kiss Goodbye to MS is helping to increase the number of countries fundraising for research. In 2017, 8 countries took part raising more than € 1 million. In 2018 12 countries are taking part with the aim to raise more than €1.2 million to fund research and services . Ava Battles, Chief Executive, MS Ireland comments: "While each country embarks on their own unique Kiss Goodbye to MS journey, the global MS community is more collaborative than anyone has seen before. MS Ireland is delighted to be involved in launching this important campaign for the third year running in Ireland to help raise funds for MS research and essential services for more than 9,000 people with Multiple Sclerosis. It's an important campaign for people and family members affected by MS. The campaign is also, significantly about hope, enabling and empowering people with MS to live the life of their choice to their fullest potential.” Rosie McCormack, 27, and Sara-Jane Tracy, 31, both living with MS are part of a squad of MS ambassadors to the campaign. They are among more than 9,000 people living with MS, facing the challenge MS every day. Help Kiss Goodbye to MS WEAR Raise funds and awareness by wearing something red or hold a red day event at work or in the community. Put on your favourite red lipstick, pucker up and share a kiss on your social media platforms using the hashtag #KissGoodbyeToMS. Please text KISS to 50300 to donate €4 and nominate your friends and family to take part. If you don’t fancy wearing red lipstick, any red item of clothing or accessory will do! DARE Dare yourself or someone else to do something out of your comfort zone and get sponsored for it. This year we’re daring people to do the MS skydive! But sky dives aren’t for everyone so please feel free to do a different dare! www.kissgoodbyetoms.ie/upcoming-events/ SHARE Share the message with friends and family to spread the word.
With a combined 175 years of living with the diagnosis of multiple sclerosis, the MS & Me blog team shares some golden nuggets of lessons learned. We asked our cadre of MS & Me bloggers what lessons they might have learned living with multiple sclerosis. Our editorial team was surprised – but then, once we thought about it we weren’t surprised at all- at how similar our contributors’ advice was. Yes, everyone’s MS is different. And just as everyone’s life experience differs, the way we cope with the challenges and adversities the disease visits upon us will vary. Still, there were several common themes running through their responses and we hope you find them helpful. #1 Don’t let others tell you how you should feel, behave, or live your life with MS. Nobody knows your life better than you; listen to your body. Learn to deal with insensitive comments, because people can say the most insensitive thing. #2 It’s okay not to be okay sometimes. Give yourself permission to leave that super hero cape in the wardrobe. #3 Accepting help is not a failure and doesn't mean you are a burden. People who care about you are just as frustrated with MS and want to do something to help. It makes them feel better. The price to be paid for overdoing things can be high, so learn to differentiate between doing as much as you can and doing as much as is reasonable. Ask yourself, “Can an assisted device of some sort make this task easier?” “Would that improve my quality of life?” If the answer is yes, use the damned device. #4 Self-care is not the same as being selfish. It’s okay to put myself first. It’s okay to say, “No”. #5 Don’t be afraid or embarrassed to talk to your medical team about anything… ANYTHING! From sex to toileting to cognition to palliative care and your fears, talk about it. Embarrassment gets in the way of you receiving the best possible care. #6 You have nothing for which to apologize when it comes to multiple sclerosis. MS is not your fault and MS is not something of which you need be ashamed, so MS doesn’t get an “I'm sorry”. Save the apologies for when they really matter. #7 Learn to adapt to the moving target of your ‘new normal’. Make allowances and be realistic about what you can and can't do. Everyone has his or her limits. We just might face them more regularly. #8 Life stops for nothing, not even MS. Don't let the disease stop you from living, loving, and laughing. MS will take the steering wheel if you let it…. Don’t Let It! #9 Be kind to yourself. Living with an oft-invisible illness can be tough. Be grateful for what you have and still be willing to share of yourself with those who make a positive difference in your life and the lives of others. You have great gifts worth sharing. #10 Not everything that goes wrong with your health (or your life, for that matter) is necessarily MS related. If you need to talk it out, find someone you trust to talk to. If it’s a professional, make sure they’re trained and accredited. Bonus Lesson: Don't ignore your medical team's advice. That said, it’s your life. If you have done the research and feel that it’s best for you to disregard their suggestions, don’t go rogue. Let them know what you are doing or not doing, what you are taking or not taking and why because, well…see lesson # 1. Wishing you and your family the best of health. Cheers.
Patients Deserve Better On the day of the sensory-experience café popped-up on Exchequer Street a new website - PatientsDeserveBetter.ie - was also launched to help those affected by MS demand quick and better access to new medicine. New medicines can’t help if patients can’t access them: Irish people with multiple sclerosis (MS) are waiting for medicines that people in other European countries already have access to. This is because the Irish system for making medicines publically available is broken. Once a medicine is authorised by the European Commission, countries like Germany make it available to patients immediately. In Ireland, the process takes an average of 348 days. In some cases it can take over 4 years. Patients deserve better. People with MS can’t wait. Irish people with MS need, expect and deserve quick access to new, innovative and effective treatments through a public system that is fair and sustainable. The solution is a system similar to Germany’s where people with MS get access to medicines as soon as they are authorised by the European Commission. The State and the pharmaceutical company can then negotiate a price for the medicine but patients will not be forced to endure any wait for reimbursement. If you wish to help people with MS get the medicines they need, you can send an email to the Minister for Health, your local TDs and members of the Oireachtas Health Committee, highlighting your concerns to them. This initiative is a partnership between MS Ireland and Roche Products (Ireland) Ltd.
Read the first blog for MS and Me from Katie St. Lawrence (24). She shares her experience of what it means to have fatigue, how she deals with it and how, thanks to being strategic about rest, energy and listening to her body, life is as enjoyable as ever. I never knew when I was first diagnosed that fatigue would be one of my biggest challenges in my battle with multiple sclerosis. During the diagnosis process, I was always asked by the doctors and nurses how my energy levels/fatigue were. I never had any complaints. This changed a year after my first relapse. It was during the summer time when I started experiencing fatigue. I began to notice that the smallest of tasks would leave me feeling wrecked and needing to take a break. Jobs like preparing the dinner or cleaning my room (which never used to be an issue for me before) left me feeling like I had just completed a mini-marathon! I started to get jealous when I looked around and saw other people around me doing these tasks without any difficulties. I also felt angry with myself when I thought about all the times, pre-MS, when I sat around doing nothing. I could have been enjoying myself! Little did I know then that I would be suffering from what I could only describe as the Ultimate Tiredness x10 for basic tasks. Katie’s Fatigue = waking up after a full night’s sleep only to feel as if I’ve not had any sleep at all. Or being so tired that I can barely move and have to talk yourself into moving. Fatigue is when a hot shower can drain every ounce of whatever remaining energy out of your body. It leaves you feeling completely shattered and defeated. Like many people with MS, I have my good days and bad days when it comes to dealing with fatigue. Fatigue is with me all year round but is so much worse in the summer time in the higher temperatures. On my good days I can go most places or do most things without it affecting me too much- only a little bit fatigued. But on my bad days, I wake up feeling completely wrecked and basic tasks almost wipe me out. Since the first year, I have learned to deal with my fatigue. I’m more strategic now- if I have an event coming up I prepare by taking things easier in the days leading up to it. I have also learned to listen to my body more and if I feel as if I am over doing things, I take a rest or get an early night. While fatigue can be extremely difficult to deal with, I try not to let it rule my life. When I listen to my body, I can manage. Things are very different to pre-MS but despite the fatigue, by making small changes, listening to the changing needs of my body, the most important thing is I still get to enjoy myself.
is a global campaign that raises awareness and funds for MS. We are calling on our supporters to WEAR, DARE or SHARE!
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26 April 2018: Yoga classes to help improve health and wellbeing. Ongoing throughout 2018
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