MS Ireland was delighted to host the 2013 National Meeting in Galway on the 28th of September. In addition to providing lots of information about aspects of MS we also held our AGM, elected a new board and announced our national award winners.
Dr Susan Coote kicked things off with a presentation about keeping active. She outlined some simple ways to remain as active as possible regardless of ability. Her advice was to start small, stand more than sit and set short-terms goals as well as long term.
Trevis Gleason hosted a panel discussion which covered employment, exercise, being online and volunteering with MS Ireland. Willeke, Grace, Anne-Marie and Mark (all people with MS) spoke about how they approached these subjects.
We were delighted to welcome Professor Alan Thompson to speak about his recent work on progressive forms of MS. Professor Thompson gave an overview of the various pieces of research currently taking place and outlined the future work of the new alliance.
Professor Alan Thompson, Institute of Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London
‘Putting Your Priorities First – Driving The Progressive Agenda’: A look at new and exciting research in progressive forms of MS. View presentation here (1 hour 4mins)
Dr Susan Coote, Lecturer, Physiotherapy Department, University of Limerick
‘The Benefits of Being Active’: A practical overview of strategies and resources to remain as active as possible. View presentation here (51mins)
Trevis Gleason hosts a panel discussion covering employment, exercise, being online and volunteering.
The highlight of the day was the presentation of the three national awards. These awards are given to those who demonstrate courage, dedication and great care for those around them. We were delighted to present the 2013 awards to these fantastic women:
MS Person of the Year: Elsie Ryan
Volunteer of the Year: Ronnie Jackson
Carer of the Year: Catherine Carey
Manfred Huschka was re-elected to the Board and Edel O’Kelly joins for the first time. Edel a qualified solicitor, working for a large firm in Dublin. Her mother has MS.
Joe Cahill and Sean Murphy stepped down and we would like to thank them for their diligent and passionate service to the Board of MS Ireland. Sean was and will continue to be a vital volunteer in the Cork City voluntary Branch and Joe, an ex health services employee and consultant, will continue to support the work of MS Ireland.
The chair of the finance committee gave an update on the financial status of MS Ireland. The Chief Executive gave an overview of the activities of MS last year. She encouraged us to celebrate the combined work of the organisation and reflect on the real difference we make to people with MS and their families.
View of AGM Annual Review presentation
Our 2014 calendar was officially launched at our National Meeting Day and is available through our online shop and a number of retailers nationwide
New findings show improvement in balance 27 people with multiple sclerosis underwent a 12 week intervention using a Wii balance board. Researchers used an MRI technique called diffusion tensor imaging (DTI) to study changes in the brain. The MRI scans have shown that use of the balance board appears to induce positive changes in brain connections associated with balance and movement. Dr Prosperini lead researcher said 'The most important finding in this study is that a task-oriented and repetitive training aimed at managing a specific symptom is highly effective and induces brain plasticity," he said. "More specifically, the improvements promoted by the Wii balance board can reduce the risk of accidental falls in patients with MS, thereby reducing the risk of fall-related comorbidities like trauma and fractures' Dr Susan Coote, MS Reseacher at the University of Limerick (UL) said, "Balance problems are common for people with MS and lead to problems with walking or falls and injury. Because balance is a complex problem that can be caused by weakness, poor sensation, poor coordination or a combination of all of these, assessment and treatment by a Chartered Physiotherapist is important. The Wii balance board is one promising treatment option that may suit people with relatively minor balance problems and the studies by Prosperini et al have reported interesting results. They reported that the treatment can improve balance and reduce falls, but also showed that changes at brain level were responsible for the improvements seen – this is important as we strive to understand the best ways to address these complex balance problems for people with MS. Other treatments such as physiotherapy based on core stability, dual tasking and sensory inputs can also make a difference as can home programmes. Because MS symptoms vary it is important that we have a range of treatment options to suit the individual nature of MS symptoms." Further reading Irish Examiner article 27/08 PubMed article
Back in my school days, there were two types of copies: the ones with the lines and the ones with the squares. A protractor was about as sophisticated as my pencil case got - although, I was ecstatic to find lethal weapons (set-square and compass) therein! Things have gotten much more complicated in the year of the loom band with all kinds of paraphernalia to be bought before September the first. I spread the Back to School chores out over the Summer holidays this year. I had a stressful few days late last August when I witnessed the manic look my fellow parents get in their eyes when they realise that the last B4 Handwriting copy available in the county is up for grabs. I saw two grown women almost come to blows over the queue in the bookshop and it was not pretty! You need to be at the top of your game and having an illness like MS does not marry well with stressful situations. I always start out the new school year with good intentions. We will NOT be late! We will NOT forget it is P.E. day! We will get the homework done as SOON as we get home. We will be MORE cheerful than the von Trapps. We will ENJOY tasty and nutritious lunches (even though one child only likes garlic bread and the other is always way too busy chatting to eat anything in school). As the school year goes on - things start to unravel a bit. New shoes get scuffed. Knees get grazed. Tears fall and get wiped away. The unachievable makes way for the “good enough”. It’s important to rejoice in those days when nothing in particular happens. When we are just living. When the homework gets done eventually and we all go to bed happy-ish! The kids are of an age now where they understand a bit more about my MS. They know I like to take an afternoon siesta and quite often I say the wrong word when I meant another one. They know I am not one for long walks and they will probably never witness me running (unless I have caught sight of the last B4 Handwriting copy!). Sometimes, they ask me if the doctor has made me better or if I “still” have the MS. They have gotten used to my illness, as I suppose, have I. This isn’t a prescriptive blog. I’m not telling you about a white paper I have read or a pill you can take to improve your life. It’s about daily, beautiful, boring life going on - despite MS.
Community blog nominated for award Blog Awards Ireland works to celebrate the best in Irish blogging! There are over 32 categories and the competition was fierce but we are thrilled that our ever-growing community blog, MS and Me, has made it to the short-list in the Blog Awards Ireland Best Group Blog! This is an incredible achievment thanks, in no small part, to our talented and dedicated blog team and wer so proud of everything we have achieved with this blog so far. A list of finalists will be announced on the 19th September and the overall winner will be announced at the award ceremony in October. Keep your fingers crossed for MS & Me! Find out more: MS & Me community blog Meet the team Blog Awards Ireland website MS & Me Blog Team
'The realities of using a wheelchair' Declan Groeger, person with MS, accessibility activist and one of our MS & Me Bloggers, spoke with Alison Curtis on Today fm about MS, accessibility and how his life is affected by using a wheelchair. Podcast of Declan's interview is now available>> Meet MS & Me Blogger 'Declan>>
I think I have an aversion to the World Cup. In July 2010 I ended up in hospital, and was subsequently diagnosed, with MS. Roll on 4 years, and I was back. I was in a different hospital, and the relapse was totally different than my previous one, but the drill was the same. In the 4 years after diagnosis, I didn’t have any full-on relapses. I have symptoms all the time, I often feel like death warmed up, and there are days I can barely put one foot in front of the other. But, I’ve been able to live with it and, for the most part, get on with life regardless. Winter time is my friend. When its cooler and dark, and I can stay indoors wrapped up and in front of the fire. I usually don’t feel too bad during winter. The worst time of year for me is when spring turns into summer. That time of year when the rest of the country is hoping for heat and sunshine, and to lie out in parks during their lunch, you can usually find me skulking indoors. This year I started feeling “off” in April. It usually takes me a few days to cop on to the fact that I don’t feel well, but I can remember feeling the onslaught of exhaustion at Easter. My leg was annoying me; my arms were heavy and awkward. I was off-form in general. I was still able to do my normal day-to-day stuff, but it was getting slower and laborious. I wasn’t overly worried, telling myself and others “well, this happens every year” and ploughed on. Six weeks of feeling unwell later, in the last week of May, a full-on relapse hit me smack in the face. On the Wednesday evening my eyes were unusually sensitive to light. After work we’d headed off to do our grocery shopping and the lights in the shop were too bright for me. I was walking around with sunglasses on, like an eejit, squinting and making faces at everything. It’s grand, I thought, I’ve been busy at work, the pc has left my eyes tired. Thursday morning I woke up feeling ok. My eyes were a bit sore, but my house is dark and working from home means I can keep the blinds down on a sunny day. I worked all day, feeling a bit uneasy, but nothing I could put my finger on. After work, my husband came in to the room, and when I turned my head to look at him, he was blurry. Isn’t that funny, I chuckled, I can see you in soft focus. The blurriness stayed all evening, and I headed off to bed early. By the Friday morning, I had complete double vision in my right eye. I convinced myself it was tiredness that I needed a BIG cup of coffee to wake up. I sent the hubby off to work as normal, and set myself up at the pc to start checking my emails. Two BIG cups of coffee later, and my eyes were still banjaxed. I was sitting at the pc, typing with one eye closed. Not very productive or sensible. I have been told I am stubborn when it comes to my MS, but on Friday 30th May, I gave in. I called the GP, got a referral letter, and packed my bag to go to Sligo. On the Friday of a Bank Holiday weekend. Hey, if you’re going to do it, do it right! I’d never had Optical Neuritis before, it was a new symptom for me to deal with. It’s a pretty hard one to ignore too. It’s very unnerving not being able to see if something is in front of you. The journey to Sligo was awful. The double vision meant that instead of just seeing cars on the opposite side of the road, passing us, I could also see them coming towards our car at an angle. It also made me nauseous, which isn’t pleasant on a 2.5 hour drive. I got admitted into hospital for 5 days, I had to have an IV steroid. Once a day, I’d get hooked up to a drip for about half an hour. The rest of the time I slept a lot. I was exhausted from the relapse and from the heavy dosage of medication. After feeling off for two months, it hit me like a ton of bricks. I needed to rest and recover, and as I couldn’t escape the hospital, I took advantage of the time away from normality and rested up. When I got home after the 5 days, I wasn’t back to myself at all. In fact, I felt worse. My eyes took another week to clear up, and I was still on heavy medication. It’s only now that my family members have started commenting on how much better I look. I can honestly say I didn’t realise how unwell I was until I started to get better. I sometimes think I don’t have MS, that I’ve imagined it all and that I am spoofing everyone. The relapse made me realise that it’s not all in my head. I had a follow up appointment with my neurologist last week, who said other patients have made similar comments. I guess when we’re all functioning as normal we don’t realise how hard our bodies are working to fight this illness. And sometimes we have to give in. But, I am a stubborn article, who doesn’t give in easily. So, yeah, I blame the World Cup. Niamh
15:00 - 17:30
19:00 - 20:00
10:00 - 16:00
10:00 - 12:30
09:30 - 10:30
09:00 - 18:00
South Dublin A...
17:30 - 19:00
10:30 - 11:30
14:00 - 15:00
11:00 - 12:00