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
Three years ago, my computer died a sudden, premature and grizzly death. No warning! Just gave up the ghost during a Google search. I lost EVERYTHING! Apart from teaching me the hard way to make regular backups, I had to embark on a treasure hunt to recover any paper copies of important documents I had lying about. This Tuesday, somebody asked me for a copy of my C.V. Holy Smoke!!!! That hadn’t happened in a long, long time. I racked my brains to think where on earth I could find a recent-ish copy of my working life’s achievements. I cursed the dearly departed laptop and eventually remembered a memory stick I used to always keep with me back in the days when I worked In I.T. I dusted off the memory stick- located in the pocket of an old business suit (shoulder pads were in then!). The green light flashed when I stuck into the USB port of my new laptop. Bingo!! There was my resume in all its glory. All three pages of it. I scanned through my life’s achievements - all the feathers I had in my cap. “Hang on a minute! This document is over five years old….. I haven’t added a single thing to it since I got diagnosed with MS”. My Career took a complete nosedive - cartoon style when I got ill. Picture the scene: “Wile E. Coyote (aka my career) is running, a thousand miles an hour. He looks down - realises he is in fact running on thin air. Perplexed, he gazes at the camera and then plummets to a grizzly death. A puff of dust confirms his fate as he disappears into the abyss.” Ouch! It made me feel sad to read all about my pre-MS life. The statement of my worth. What I used to be capable of. MS had taken so much: my confidence, my career, my financial stability and my hopes. I had blamed the untimely demise of my computer for my ancient CV but truth be told; I hadn’t touched it in half a decade. I couldn’t bear to think about how hard I had worked on my career and how it had been taken away from me - without warning! I had committed that I was going to update my resume though - so I decided to bite the bullet. Sooooooooooo, what HAD I achieved since I was diagnosed with a chronic illness? In 2012, I didn’t leave the house for 6 months. That must show persistence and determination. I have travelled extensively - visiting the many hospitals Ireland has to offer. That must demonstrate a will to travel. I get by on half of what I used to. How is that for excellent budgeting skills? I manage difficult flu-like symptoms with a can-do attitude and I am a whizz with a syringe. It’s still me. Overachiever and proud of it! I need to dust off the CV (and me) and get back to chasing that pesky Roadrunner. I’m not capable of doing the things I used to but I’m sure that there is something useful I can do - with a little support. I don’t want to hide the fact that I have a chronic illness - even though I have been warned that I won’t make it past the interview stage if I don’t. I am optimistic that I will find the right employment to suit my disability. I believe that the right employer is out there. But then again - I also believe in “True loves kiss”. We will see! Simon Harris gives me hope in his Irish Times Article when he says that “we cannot continue to sideline people with disabilities. Instead, we must enable them to fulfil their potential and make their contribution to society by putting structures in place to help them access the workforce and pursue the careers of their choice.” Wish me luck! I will let you know how it goes!
First ever Drive-in Bingo in Laois Hundreds of cars carrying novices and experienced bingo players turned out on Sunday 27th July to Rathleague, G.A.A. grounds Portlaoise to blow their horns and flash their lights to claim cash prizes for their Bingo checks. “All eyes were down” as the numbers were called to the crowds participating in the comfort of their own cars and marquees were set up to facilitate people on foot. The total pay-out on the day was €4,900. Prices of books were as follows: single €6, double €10, and two jackpot fliers €3 each. The proceeds from this event and the next two events which will be held on Sunday 31st August and Sunday 28th September at 3pm will go towards three very worthwhile local groups: MS Ireland, Portlaoise G.A.A. Club and Portlaoise Musical Society Annette McCaul Fundraising Executive with MS Ireland thanked everyone from Laois and surrounding Counties who turned out to show their support for the work carried out by MS Ireland. She said “MS Ireland is very grateful to everyone who turned out today. We hope you all had a fantastic day and look forward to seeing you again in August and September. She went on to say “ this would not have been possible without the Volunteers who delivered a very professional game of Bingo despite one or two teething problems which were rectified immediately and the punters all showed their appreciation of the day out by blowing horns and flashing lights to confirm their continued support for the next two games” Get in touch For more info contact Annette086-8393964 or email email@example.com
Causes, attributions and intervention needs It is known that more than 50% of people with MS experience a fall within a 6 month period. However, there are currently only a few treatments to prevent or reduce falls for people with MS. Dr Susan Coote, who leads this research, is part of an International MS Falls Prevention Research network that will develop a falls prevention programme for people with Multiple Sclerosis. We want to find out about your MS, your falls and what you would like to be included in a falls prevention programme. This will help us to make sure that the programme is based on the needs of the people who will take part in it. What will I have to do? You will be taking part in a one to one telephone interview with a researcher from the University of Limerick. The interview will last between 25-30 minutes. Questions will include simple yes/no questions, multiple choice, open questions and others will be based on a scale. Although it is not necessary for you to be at home, it is advised that you choose a quiet and private place to conduct the interview. The interview will not be recorded; the student will fill in your responses on a data entry sheet throughout the interview. You are not required to answer any questions that you don’t want to and you may withdraw from the study at any stage. Who can participate? People with MS (over 18 years of age) who can walk at least 10 metres with or without an aid and have experienced a fall within the last 3 months can take part in this study. What do I do now? If you would like to take part in this study please contact the research team: Dr. Susan Coote Tel: 061-234278 Email: firstname.lastname@example.org Eve Geraghty Email: email@example.com
Do you have Multiple Sclerosis? Are you living near Galway, Limerick or Cork? If so, you may be suitable to take part in a new free 10-week physiotherapy-led exercise and education intervention MS researchers at the University of Limerick, in collaboration with colleagues in the US, MS Ireland and the Health Research Board have developed a new exercise programme that aims to improve strength and walking ability among people with MS. Who can participate? People with a diagnosis of MS, who are able to walk independently without a mobility aid, are over 18 years, and are currently not physically active, are invited to take part. What do I have to do? The study will involve an initial physiotherapy assessment followed by a 10-week group exercise and education programme (in a community setting in Galway, Limerick or Cork), wherein participants will be asked to attend six 1.5 hour exercise sessions and 3 follow-up assessments after programme completion. This study starts in September 2014. Get in touch For more information please contact Dr. Susan Coote Call (061) 234278 or email: firstname.lastname@example.org
We need 'focus' in our everyday lives to achieve our goals or targets. We need self-discipline to stay on track. Our battle with Multiple Sclerosis is a never ending battle and there are very few lulls in the fighting and because of that we need focus more than most. The need for focus begins with little things, with attainable targets. We need 'our little victories' as Claire Mitchell wrote in her recent blog. The longest journey begins with one step. Take the first step and set yourself a target, the second step is to set a route plan to reach the target and the third step is a celebration having reached your goal. These two lines from the poem ‘Don’t Quit’ define focus in my opinion ...'when care is pressing you down a bit, rest if you must, but don’t you quit'. We need our little victories to encourage us to keep going. Start small with realistic and attainable targets. There is no point in saying that I am going to walk one mile every day as an immediate target. Start small. I will walk 100 yards a day for the next week and then increase it to 200 etc. Re-assess your goals on a regular basis and don’t be afraid to downsize. Work within a comfort zone but strive to move outside of it. Stay mentally strong because very often mental strength is more important than physical strength. Decide on your goal. Weigh up the benefits of reaching your target and consider the disbenefits of inaction. Seek the help of a professional in deciding the route to your target and choose a realistic time frame within which to achieve it. Unrealistic targets or timescales will only disappoint you and this will ultimately break your determination and destroy your focus. Keep a daily record of what you achieve and this can help you determine whether you are doing what you should be doing. This is an instance when more than the thought counts. There are a number of different words to describe focus when taken in the context of this blog; self discipline and perseverance being the two that I like most. Focus is only important if you have set yourself a goal, a target to be achieved or a destination to be reached. Thus, if you don’t have a target you can never reach it. An ill-defined target is of no use. You cannot set out a pathway to achieve a goal unless you have set a goal. Putting it at its simplest; if you want something and don’t have the cash to pay for it you save. If you save enough you get your desired product. (Borrowing doesn’t count!!). While you are saving there will be tough choices to be made; if I buy this I can’t save that money and my target is still out of reach but if I don’t buy and save my target is nearer to my grasp. Some authors on the importance of focus, recommend telling people about goals in the hope that they will then act as monitors of your progress. Personally, I believe in keeping my goals to myself, however I do keep a daily log. Honesty with oneself is very important, dishonesty is only fooling yourself and ultimately leads to disappointment!
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