MS Ireland
Informing, Supporting and Caring for the MS Community
An article appeared in the Irish Independent yesterday which suggested that people with multiple sclerosis may see a worsening of symptoms if their intake of salt is high. The article says that according to the Journal of Neurology Neurosurgery and Psychiatry, researchers assessed the blood and ...
Published by MS Ireland on Monday October 20 2014 12:31 PM
Sativex not cost-effective The National Centre for Pharmacoeconomics (NCPE), which assesses the potential benefits and costs of new medicines, is once again in the spotlight following their ruling that Sativex is not cost-effective at the price quoted by its manufacturer, Almirall. This means th...
Published by MS Ireland on Thursday October 09 2014 10:29 AM
Article appears on The Journal An interesting article has popped up on The Journal this morning, written annonymously by a woman with MS. We think it's an interesting read and like anything in life, your decision to make your condition public is yours and yours alone. As the author says outright...
Published by MS Ireland on Wednesday October 08 2014 01:06 PM
Government urged to think of families in crisis As a member of both the Disability Federation of Ireland and Care Alliance, we strongly support their joint call (with several other organisations) for funding for services to be restored before any new tax cuts are introduced in Budget 2015. The ...
Published by MS Ireland on Wednesday September 24 2014 10:07 AM
Disability organisations speak out against cuts Each of the 26 disability organisations - including MS Ireland - who applied for the Scheme to Support National Organisations (SSNO) have had their funding denied. The annual Department of the Environment scheme provides essential funding...
Published by MS Ireland on Monday July 14 2014 11:12 AM
Thank you to everyone who filled out our recent survey and shared their views on medical cards. We are delighted to say that over 850 people participated in the survey. Your experiences and comments helped shape our submission to the HSE on 30th June. Here is a snapshot of findings: 71% o...
Published by MS Ireland on Monday July 07 2014 12:32 PM
On World MS Day 28th May 2014 MS Ireland hosted a one day conference, Living with MS, In Cork. Dr. Brian Sweeney, Consultant Neurologist Cork Universtiy Hospital, was the opening speaker. He bemoaned the fact that even if 12 more neurologists were appointed by the HSE the ratio would only be 1:1...
Published by Declan Groeger on Saturday June 14 2014 02:00 PM
On World MS Day share YOUR wish... We all have ‘One day…’ moments, whoever we are and whatever our walk of life. They are the things we want to do, discover and achieve - our hopes, aspirations and triumphs. MS Ireland would be delighted if you would share your ‘O...
Published by MS Ireland on Saturday May 24 2014 10:00 AM
I have known that something was up in the old noggin department for a few years. That sinking feeling when I forget a word I KNOW I know. When the check-out at Aldi is too much for me to keep up with. When I can’t help a nine year old with her Maths….. The best way I can describe it ...
Published by Joan Jordan on Monday March 10 2014 11:00 AM
Focus on Multiple Sclerosis Did you catch this morning's edition of Ireland AM on TV3? If not don't worry, you can catch up now. Joe McCaul (26) was on the show alongside our very own South Dublin and Kildare Regional Coordinator Roseanna Duke. The pair spoke with Mark Cagney and Sinéad ...
Published by MS Ireland on Tuesday February 25 2014 11:15 AM
‘Don’t let MS stop you from finding your happily ever after’… This week Ciara O Meara reflects on dating and disclosing her MS when she finally found the one! Dating is a pure and utter minefield! Your preparation for the field is diligent and precise. You approach the field with care and caution, as you have no idea where potential disasters lie. The field itself is exciting; it’s unpredictable and it’s nerve wrecking. And your exit from the field can be a calamity or pure serendipity. MS just drops a few unexpected mines into the field of mayhem! MS never impacted on my dating life and it certainly didn’t do anything to lessen the amount of frogs that reared their heads along the way! When I was diagnosed I was in a relationship, but that ship was already sinking long before MS was mentioned. It was sinking at such a rapid rate that I never told him of my diagnosis- what was the point? It wasn’t going to make any difference to our relationship and I didn’t want anyone hanging around out of guilt or fear. Plus, I was excited at the thought of single Ciara returning to the minefield of dating! I didn’t have the Tinder experience when I was single. It was late bars, nightclubs or a friend of a friend. I didn’t have the ‘liathróidí’ to approach anyone without an alcoholic beverage in hand. Give me some Pinto Grigio and I had balls of steel. There were once off kisses, numbers swapped, a regretful one-night stand, a date, maybe two, even three but MS was never mentioned and it never entered my mind. I had no visible symptoms of my MS and there was no indication that anything was wrong. I was young, free and single and playing the field and MS had no reason to be involved. Like I said, MS never impacted on my dating life, not until I fell in love that is. Ladies night out in a dodgy nightclub at home at Christmas- it was only meant to be one of those random drunken kisses. Numbers were exchanged, dates arranged and by month four we were ‘Facebook Official’ and I was falling and falling hard. I had told Dave I loved him long before MS was mentioned. Maybe it was fear, maybe worry, pity or embarrassment that stopped me every time from telling him. I thought if I told him that he would feel morally obliged to stay in the situation rather than wanting to be in a relationship. There were only so many excuses I could make for the perfectly circular bruises on my tummy and thighs from the Rebif. I wanted this relationship to develop and to do that I had to be honest about the uncertainty and unpredictability that this disease brings with it. When I told him he stared blankly for a few minutes, my heart rate increasing by the second. He looked at me, held my hand and said ‘Ciara, I fell in love with you and now that I know you have MS, I will love you even more’. I had made MS out to be bigger than what we had when in fact our journey together with MS would make us stronger. Six years on and a house together is testament to that. He’s there on the bad days, he’s there on the good days and he’s there to support me in everything I do. Everyone’s someone is waiting for them. Don’t ever let MS stop you from finding your happily ever after. Brace the minefield with open arms and kiss all the frogs that hop in your way- you never know which one is the right one!
MS Ireland will host the annual National MS Conference on Saturday, 22nd September in the Radisson Hotel, Athlone, Westmeath. Highlights on the day - confirmed speakers: Professor Gavin Giovanonni, Professor of Neurology Centre: Centre for Neuroscience and Trauma. Research Groups: Neuroimmunology. Barts and The London School of Medicine and Dentistry. Dr. Jens Bansi, Exercise Scientist; PhD., Rehabilitationszentrum Valens, Switzerland. Dr. Sabina Brennan, Trinity Brain Health and ADAPT, TCD. Workshops Irish Hospice Foundation, Planning for the future. Genomics Ireland, Dr. Kate O’Brien identifying specific patterns in genes in people with MS so as to develop new diagnosis tools, treatments, and better our understanding of disease progression. How to book your place! Registration from 9am. Meeting starts 9.45am - 3pm followed by MS Ireland Annual General Meeting (AGM) will also take place on the day. Cost of Day €20 (including lunch). Get in touch For further details contact western@ms-society.ie or 091 768630 National Conference - Save the Date originally published 9th February 2018
This week Robert Joyce discusses the good days and the bad days. Chronic illness invades every part of our lives and it can be so easy to fall into a trap of grieving for what used to be. Snowflake. I never thought that I would class myself as part of this new category. It is a term that is used to describe the new generation, signifying that everyone is different. Unique. Special. Beautiful. Multiple Sclerosis has so many variations of how it affects the people that have it; MS can definitely be called a snowflake disease. In the last four years, my health has changed. My Multiple Sclerosis raised its head, announcing its return by adding extra weight to my right leg and placing gloves on my hands that contain thousands of pins and needles. It woke up because of a minor car accident that shook this beast from its slumber. Accompanied by a headache that since then has never abated. Chronic illness can and does, invade every part of your life. Work suffers, testing your relations with loved ones and your mental state can transform from happy to maudlin in an instant. Your mind brings up memories of days when you could walk for hours, or become immersed in learning something new. Now, these are not possible. Living with longing for the past only leads to despair. I have travelled this journey and understand how easy it is to fall into this cauldron of lost abilities. My toe has been scalded many times as I started to slide into this boiling broth. Now I know how this feels and have found a way of lifting myself away from this bubbling pot. I’ve placed my damaged body back on a path with the sun warming my back by focusing on my abilities, on the friendships made while walking this road. Focusing on the opportunities that I have, the abilities that I learned, and newfound friendships, has created vital, renewing times for me. Lost mobility has put me in front of my laptop and now I write. Seeing that the creativity that I need to feel fulfilled can be met by using these keys, I now share my stories to an audience that spans the world. Singapore, Peru, USA and even Cork are all places that my words have been read. My eyes once again sparkle with excitement as I wonder what new post I shall write. I share my story with the world and I know it is listening. In this uncertain future that I have as a result of my medical condition, I know that those dark, cauldron days will return. However, those days are a stark contrast to the days filled with happiness and gratitude for the new abilities that I have learned. I am secure in my belief that "the dark days make the bright days brighter". Discover more from Robert Joyce on https://a30minutelife.com/
and the lucky winners are... The draw for our Annual Summer Raffle took place on Friday, 6th July 2018 at our National Office. Women’s Rugby International Nora Stapleton joined us for the draw on the day, alongside our lovely Fundraising Executive Sally Spearman We are delighted to announce this year’s winners: 1st Prize – Raymond McCarthy, Limerick 2nd Prize – Teckie Brett, Tipperary 3rd Prize – Jane O’Halloran, Dublin. Congratulations to all our winners and a huge THANK YOU to everyone who supported this year’s Summer Raffle. The funds raised will make a huge difference to services in our Care Centre.
This week Helen Farrell talks delicious, nutritious food and current food trends. Read on for her take on MS, gluten and the adjustments she (and her family) have to make so she stays healthy and well. “Gluten! Such a poison” said the man at the café till. “How”? In what way” I asked, curious to know his reasoning. “You know, it’s really bad for you, causes so many problems in the body” he said. “Yeah”, I said vaguely, glancing at my gluten-free chocolate muffin loaded with sugar and oil. He looked like he worked out, Instagrammed and used sunbeds. I don’t. It made me think a bit about the whole gluten-free (GF) trend. Seems like there are lots of people following the GF diet without truly knowing why; such a lot of hassle when you don’t medically need to. If you ask people their reasons for going GF, some say they feel better without gluten, some MSers think their MS will be alleviated, but the bottom line for many is because they think it’s bad or they’ll lose weight by going GF. As a person with Coeliac disease I can assure you that a GF diet can be very unhealthy if you only live on GF chocolate, crisps and pizza. A normal diet can include plenty of gluten and still be very healthy. It was a shock when my husband mentioned that dealing with my Coeliac disease was more hassle than MS. He wasn’t being unkind. In terms of impact on things, he was more aware of Coeliac disease. When we want to stay somewhere, join with family for a meal, for shopping, to even prepare our food and avoid cross-contamination in the kitchen (a crumb will cause immune-damage to a true Coeliac), it’s more present for him. But then I realised that it’s not just him that feels that. Most people make more of an allowance for my Coeliac disease than my MS, which is mostly invisible. MS is horribly, constantly present to me, but like an iceberg, the bulk of it unseen by most (but maybe I’m glad it is). MS feels like a relentless Terminator robot, coming for me without cease, trying to annihilate me. Even when I try to escape, it melts down and comes at me afresh. Coeliac disease is merely an irritation. In fact, it seems like the perfect disease; it’s easily fixed – just avoid gluten. Now if MS were the same, I’d be a happy woman. There is no diet that is proven to alter the course of MS, at this time. Some people favour the Swank diet, Paleo, Vegan, or “Best Bet” but with no definitive proof of any specific diet helping people with MS, I’m going to keep enjoying my food as it is. Food is such a pleasure! If we follow general dietary principles for good health, it will help us live well with MS. Perhaps my Nana was right when she said “a little bit of what you like, does you good” but in my case, not gluten. Coeliac Society of Ireland: signs and symptoms Diet and MS, Pavan Bhargava MD, National Multiple Sclerosis Society (US)
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