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
This week Fergal Hughes wonders about what the future holds for him in terms of his MS ... and realises that he is more concerned with 'here and now' I was diagnosed in January 1996. The diagnosing doctor told me that he believed my type of MS to be remitting/relapsing (RRMS) and what that would more than likely entail for me. I remember in the days following my diagnosis I bought every book on the topic of MS that I could find in town. I then went home and promptly threw them all under the bed! Looking back, I think I was just trying to make sure that I at least physically ‘possessed’ as much knowledge as I could (I guess I was trying to get a sense of ownership over this unexpected addition to my life). But then I simultaneously created my own little ‘Pandora’s Box’ in my room, never to be opened for fear of what it might contain. Coincidentally, my MS went into remission at that exact time, allowing me to develop a healthy denial about it. [Aside: If I remember correctly, I think I never actually read those books. Ever. In 1998, two years after the start of my remission, MS returned with one hell of a relapse, going so far as to give me a permanent limp in my right leg. Now, in 2018, I can say that I believe I’ve learned that attitude can be at least just as important as knowledge. In my opinion, there really is a lot to be said for that old chestnut, Positive Mental Attitude. Over 20 years since my diagnosis, I’ve developed two new conditions, both neuralgias and both facial/cranial extreme nerve pains. One is called Trigeminal Neuralgia (TN) and the other is Cluster Headaches (CH). Nobody told me beforehand that I was going to develop these. There was no medical prognosis, best guesses, psychics, witch doctors, NOTHING . I just suddenly acquired the conditions and I had to quickly learn how to deal with them. And I’m still learning how to deal with them. Again looking back, a doctor or neurosurgeon or whoever, might have hinted TN and CH might be on the cards but personally, I reckon that that would have been a potential disaster. I say this considering the proven effect that fear and stress can have on a newly diagnosed person with MS. At the end of the day, there’s only so much one can do about the future. Right now the most important thing for me is dealing with the here and now.
Nominations for this year’s annual awards are now open! It would be a great honour to be nominated for the national awards, so we would encourage Branches and individual members and staff members to nominate members who they feel deserve recognition. Our Annual Awards are the Society’s way of recognising the contribution many of our members make within their families, local communities and MS Ireland. The annual national awards will be presented at the Gala dinner in Athlone on Friday, 21st September 2018. Download form(s) and nominate someone special. MS Person of the Year MS Carer/Helper of the Year MS Volunteer of the Year Closing date for receipt of nominations: Friday, 17th August 2018 Nomination forms are also available from our National office, MS Care Centre and your local Regional offices. We would recommend you to return your nomination forms to MS Ireland, National Office, 80 Northumberland Road, Dublin 4. Get in touch For further information please contact alicem@ms-society.ie or call (01) 6781600 originally published April 2018
‘But you look so good’…. MS & Me blogger Niall McGahon shares his thoughts and reaction on hearing this compliment. “But you look so good….” For some, this expression can be one of the most frustrating things to hear when you have MS. For me, it is simply someone paying me a compliment and my immediate reply is “Thanks a million…” Personally, the most frustrating aspect of having MS - is having this progressive illness. No two days are the same nor do they have any predictability. This is where I have tried to take back control of my life and put a bit of manners on MS! Now this was by no means an instantaneous migration and did not happen overnight. It was and still is difficult to make such major lifestyle changes and I am continuously learning each and every day. Many times, of course it does get in the way, or rather my right leg gets in the way of my left leg. Suddenly the footpath and I are about to become very close friends! But like all things you learn to live with and give yourself the best possible chance of limiting the relapses through exercise, major dietary change, meditation and focusing on what I can do and not on what I may or may not be able to do in the future. I follow the OMS program for all of this. The great sports phycologist, Dr Bob Rotella has a simple concept used for golf of “staying in the present”. These golfers play their next shot until they run out of holes and then add up their score. I have taken this from my golf and tried to apply it to my illness, simply take each day as it comes and deal with that day. The rest of the days are, for the most part outside of my control. Since being diagnosed with MS in 2014 and having many experiences since, I have become acutely aware of how well I am in the grand scheme of human health. I have been in hospital for various treatments and have seen people who have much harder crosses to bear than me. So as a result, I am trying to make myself more aware of when someone is paying me a compliment. I have no idea what that person is going through, yet they have taken the time to think about me and what I am going through by paying me a compliment. The correct thing to do is simply say thank you. If you can add to peoples’ knowledge of MS along the way through conversation, then brilliant. The greater the understanding of what a person with MS goes through daily, the better. You may be in pain, you may be heavily fatigued, and you may not be in a very good emotional place. What I have learnt over the last 4 years is that the person saying that you look good could be in the very same place but for a totally different reason, so saying thank you is sometimes best for all.
New treatment option for relapsing remitting MS The National Centre for Pharmacoeconomics in Ireland (NCPE) announces positive recommendation for reimbursement for MAVENCLAD (Cladribine tablets). MS Ireland believes people with MS should have access to all and any appropriate and licensed treatments that would improve or assist in the management of their condition. The MS community is very much looking forward to having access to this treatment option. Read MS Ireland’s briefing document on the process of licensing and reimbursement of new medications.
‘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!
Do you dare to take on our fire walk for Kiss Goodbye to MS on September 15th in Dublin?
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17 August 2018: Physiotherapist led exercise programme for people with MS.
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