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
MS Ireland is a proud signatory of the new ‘Charter for Patient Involvement in Medicines Assessment & Reimbursement’ which is published today Wednesday, 20th February 2019. The development of this Charter for Patient Involvement is an important milestone for IPPOSI. As a patient-led platform, we have led multi-stakeholder discussions and identified consensus within the medicines assessment and reimbursement space over the past decade. This Charter, developed with a cross-section of the IPPOSI patient membership as well as the support of the Medical Research Charities Group (MRCG) and Rare Disease Ireland (RDI), provides a collective and holistic response to address the many patient concerns expressed about levels of transparency, accountability, quality and fairness in the Irish Health Technology Assessment (HTA) and post-HTA process. You can download the report here
New website launch Neurological Alliance Ireland (NAI) have launched a new website as part of the Love Your Brain campaign. The campaign aims to promote greater awareness and understanding of the brain and brain conditions as well as the need for more investment in services, research, and prevention. National Brain Awareness Week 11th - 17th March 2019. To find out more, visit Love Your Brain website includes events happening near you. Follow on twitter using the hashtag #loveyourbrain2019 #brainawarenessweek2019
On this Valentine’s Day when many of us choose to celebrate romantic love, Christina McDonald and Niall McGahon give us their take on MS and Romance. Christina We see it all around us. On the streets, in movies and in songs, love and romance. They are everyone’s desire at some point. I was diagnosed at 26 in the common age range for an MS diagnosis (20s-40s). These are also the years seen as someone’s prime years- in college, looking for love, perhaps settling in with someone, building a career, getting married and all the typical life-steps. MS at times has changed how I view myself as a woman. Questions constantly loom such as “am I a burden for my partner?” or “am I still attractive when my symptoms peak?” or “have I embarrassed you in public? “Am I still fun to be around when my fatigue is bad? Sometimes I wish I could be more spontaneous and that I had more energy like I used to before MS. It can be difficult to maintain a romantic relationship when you’re living with MS but with two people who compromise and understand the difficulties that may arise from MS, they can plan around what suits their needs and keep the spark alight. The thing is, I am not my disease, I am not MS. While those questions might go through my mind, I know that when my partner looks at me, she still sees the person that she fell in love with and not the condition. Although we might not go out for date nights as much as we used to, we still make a joint effort in bringing a date night to us. This includes nights in with a movie and takeaway - Netflix and chilling out. We tend to do things earlier so that I have more energy. Compromise is key for myself and my partner when it comes to MS and romance. I see myself as lucky because I had found “the one” before my diagnosis so I didn’t have to worry about how to tell someone I’m dating about my condition. My partner has been with me every step of the way. Niall’s Perspective I think it’s fair to be said most men don’t live up to the Hollywood romance and the way it’s sometimes portrayed but god do we try our best! By the time of my diagnosis at the age of 34, I had met my beautiful wife and we were 4 years married. We now have a beautiful son and another on the way. Like Christina, I never had to go through the process of having to tell someone about my condition. I thank god every day for that because without my wife going through this process with me, I don’t think I would be as strong as I am now. One of the definitions I found for Romance was: “feeling of mystery, excitement, and remoteness from everyday life” Quite apt for both MS and romance with a loved one. The illness fills your head full of mystery about the future and sometimes pulls you back and isolates you into a remote-ness from your everyday life. MS gives you a kick in the nuts, excuse the pun, from an in-timacy perspective. I’ve found myself questioning myself on countless occasions “Jesus you’re useless…”, “how embarrassing…” and as time progresses this can eat at you and sometimes it’s easier not to try. Thankfully I get a kick up the ass and get pulled out of whatever dark room I may have entered. All because the person who, 13 years ago filled my head full of mystery of what could be, of excitement of what was to come, took me to a remote place that was only her and I. To me romance is not necessarily about the big gestures; it may have been that a few years ago. Sometimes the smallest of things can be the most romantic. The spontaneous back and foot rub, the dinner made or simply the holding of hands. These all may seem the easiest for most. However when you have little feeling in your dominant hand these tasks become even more challenging but more enjoyable and appreciated when they are done. Christina is right, Netflix and chilling on our own sofa is a bloody good date night too! My perspective on life with MS is about team work. Like Christina, we are not MS, it doesn’t define us. We have the full understanding that the love that we first found all those years ago is not going to be broken by MS, we are only going to get stronger. Ro-mance is not dead, it has just taken on a different form and that’s ok because it will never disappear.
Research Request What is Parental self-efficacy? Parental self-efficacy describes the beliefs one has of their ability to manage and perform the role of parenting successfully. Who is carrying out this study? Rachel Mc Laughlin is a 4th-year Occupational Therapy student in NUI Galway. This research is being completed with a final year university project. This study will run between January and April, 2019. Aim of study Your participation in this study will add to knowledge on how MS can affect parents, specifically through levels of fatigue and parental self-efficacy. It is hoped that this information will lead to an improvement in health services in the future. Who can participate A parent with MS with a child/children between 2-18 years old? If you are interested in participating in a study looking at the impact of fatigue on parenting please read the information sheet to find out more about this study and if you are eligible to participate Get in touch Contact the researcher at r.mclaughlin5@nuigalway.ie who will happily answer any questions that you may have.
We are so excited to announce that we have teamed up with Emma Larkin, a jewellery designer who is based in Galway. Emma has designed these small little kisses to wear on your lovely lobes. So now you can show your support and help us Kiss Goodbye to MS! Emma is supporting our Kiss Goodbye to MS campaign as MS is a condition that she has been surrounded by for her whole life. Emma’s mum was diagnosed with MS before she was born. “I am aware of the good and the bad days that MS can bring but I think trying to have a positive attitude, can go a long way. My mum has been a great support in my life so it means a lot for me to take part in this Kiss Goodbye MS campaign”. Emma has recently started her own jewellery business and her work is on sale both online and in selected shops. You can check out more of Emma’s amazing designs here. So what are you waiting for? These stunning Kiss Goodbye to MS lip earrings are subtle and add a touch of glamour to your everyday! So head to our shop or call one of our team on 01 6781620 to place your order today! Our earrings are priced at €11.00 including post and packaging. 50% of the cost will do directly to Kiss Goodbye to MS.
Can you imagine the adrenalin rush after jumping out of a plane at 10,000FT? Well wonder no more! Sign up to our Skydive for MS in 2019 and find out for yourself!
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21 February 2019: Group led physiotherapy classes for people with MS, starts 7th February
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