MS Ireland
Informing, Supporting and Caring for the MS Community
Date: MONDAY, 5th June 2017
If you joined us last year you'll remember a few things:
1. You were part of Team MS Ireland!
2. The day was a whole lot of fun.
3. Your support made a huge difference to us in 2016. Your hard work through fundraising and shouting about Team MS Ireland supported our community-based services for thousands of women living with MS in Ireland.
Now let's see if we can make 2017 even better! Grab your girls, sign up below to join Team MS Ireland and get active for MS!
When you run a marathon as part of Team MS Ireland you help us run local services for people with MS, like Tony. See how!
This week Declan Groeger is not a ‘Muscle Mary‘ but believes exercise has helped him maintain a positive attitude and helped to preserve his mental health. I am passionate about exercise now but that wasn’t always the case. I am a convert and an advocate for the cause. I am not going to use this blog to tell you why you should exercise but believe me when I tell you that you should. I am going to tell you about ‘Exercise, Multiple Sclerosis & Me’. There was a time when exercise was contra-indicated for People with Multiple Sclerosis (PwMS) and that is my excuse for not exercising for so many years after my diagnosis; probably closer to the truth was the fact that I was a bit on the lazy side. The attitude to exercise has changed over the past number of years and these days exercise is actively encouraged in its many different forms. I was never sporty except as a spectator. I never carried any extra weight. I didn’t smoke at the time of diagnosis. I drank in moderation and ate relatively healthily. I was never motivated to exercise but in any event I never realised how important exercise, or the lack thereof, was going to be in later life. I had a young family; keeping up with two small children, household chores, gardening and a job were enough exercise, or so I thought. I exercise regularly now and have done so for more than 11 years. I go to the pool or the gym 2 or 3 times a week and I also have a list of daily home exercises. I don’t want to be a ‘Muscle Mary’ and I definitely won’t be blamed for overworking any of the gym machines! I go to the gym early in the morning when I am at my best; my energy levels start to wane in the afternoon. I love the social interactions in the gym and I feel that I am doing something positive to stem the MS tide. Even though I always feel tired after a gym session it is a good tired and the feel good factor is great. I believe that exercise has also helped me maintain my positive attitude and has helped to preserve my mental health. I’m sorry I didn’t start exercising earlier but because no one knows the course of the disease or the speed of progression, it is impossible to say whether my efforts would have been any more successful. I believe that exercise is helping me in my battle with MS and belief is a powerful motivator. I know that I should have started earlier but I also believe that it is never too late to start. Exercise is good for you whether you are living with MS or not, but don’t overdo it. A Chinese proverb says ‘the best time to plant a tree was 20 years ago. The second best time is now’ and the same can be said for exercise – it is never too late to start. Looking forward to your comments... Declan Don't forget to check out able2access.wordpress.com
Highlighting Life with Multiple Sclerosis World MS Day 2017 will take place on Wednesday, May 31st and the theme this year is 'Life with MS', raising awareness of Multiple Sclerosis for thousands of people in Ireland and their families. Aoife Kirwan from Kildare and Maggs O’Riordan Wall from Limerick, both living with MS, are highlighting the challenges of life with MS including MS attacks, mobility issues, cognitive difficulties and the crucial need for increased neuro rehabilitation services. Ava Battles, Chief Executive, MS Ireland comments: “Life with Multiple Sclerosis is greatly impacted by the availability of neurology and neurorehabilitation services and this World MS Day we are calling for an increase in resources for neurology services in Ireland that match the need, ensuring access to care and support on time. Early identification of MS, early treatment with an appropiate medication and timely neurorehabilitation can improve functioning, reduce symptoms, and delay or prevent disability accumulation or deterioration.” How to get involved Events are planned across Ireland to mark World MS Day 2017 including 9,000 Steps for MS which will see supporters running, walking or dancing 9,000 Steps (6.5k) with colleagues, friends or family. Funds raised will directly help in services provision locally, in particular, physiotherapy, counselling and respite at the national MS Care Centre. Share your tips and photos/videos with us on Facebook, Twitter or Instagram for living well with MS. Don’t forget to use the hashtag #LifewithMS MS Ireland, the national organisation providing vital services, information and support to people with MS, will hold a World MS Day event at Leinster House on Wednesday, May 31st to raise awareness of essential neuro rehabilitation services for people with Multiple Sclerosis. Neurology services in Ireland: The number of specialist nurses is significantly below what is recommended for our population with less than half the recommended number of MS nurses Every hospital group exceeds the ratio for consultant neurologists for our population No centre has MRI access for routine referrals in under two months and seven of the eleven neurology centres cannot get access within one year of referral. Lack of access to neurorehabilitation services including therapies such as physiotherapy, occupational therapy and speech and language therapy. Ireland should have nine community neurorehabilition teams. There are currently only three in the entire counry and these are only partially staffed * The source of these statistics is the survey carried out by the Neurological Alliance of Alliance and the National Clinical Programme for Neurology, published in February 2016.
The Effect of Gender Identity on Help-Seeking and Social Support in Male Carers of People with MS Researcher Damien Appleton, Clinical Neuropsychologist from the University of Leicester is asking male carers of people with multiple sclerosis (MS) to complete a series of online questionnaires investigating levels of social support, carer burden, willingness to seek help and attributes related to gender role. Who can take part? Any male over the age of 18 who is a carer of a loved one with multiple sclerosis. Should you wish to do so, you can choose to provide your contact details in the form of an email address to be entered into a draw to win one of four £50 Amazon vouchers. What will I have to do? If you decide to complete this survey, you will be required to complete it in one sitting, which means you cannot save your responses half way through and come back to it later to complete. It should take approximately 30 minutes to complete and your time is greatly appreciated. What will be done with my responses? Your responses will be anonymous and no identifiable information will be included in any reports that are produced with the results of this survey. The responses will be stored securely on a computer that only the research team has access to and all data will be destroyed after 7 years. Should you wish to withdraw at any time, you have every right to do so and you should contact the researchers to request this. Consent: By choosing to complete this survey and submit your results, you are agreeing to the terms above and consenting to your anonymous data to be used in a research report. You are also confirming that you are a male carer of a loved one with MS. Who has reviewed this study? The University of Leicester Research Ethics Committee. If completing this survey causes you any emotional distress, please contact your GP to talk through support options that may be available to you. We thank you again for your time taken to complete this survey. Should you wish to complete the questionnaires in written form, please contact the researchers and this can be arranged. Get in touch Contact Damien Appleton by email damien.appleton@gov.gg
Event in Leinster House on World MS Day – we need your help contacting TDs! On World MS Day Wednesday 31st May, MS Ireland will be holding an event in Leinster House. We will be launching a new report on MS and Quality of Life and we will be using the opportunity to call on TDs and Senators to take action on Ireland’s under-resourced neurology services and rehabilitation services. This will include a briefing in the Leinster House AV room at 10 am. We need your help in contacting TDs and Senators to ask them to come along to the event – if you can attend your local TD’s clinic, please bring the event to their attention and ask them to go along. You can also email them – you can find who your local TD is and get their contact details using this website: https://www.whoismytd.com/ Below is a draft email that you can use – please feel free to adapt the email to include information on your own personal situation and what their support would mean to you. If you receive a response from your TD saying they intend to go along, please let our Information, Advocacy and Research Officer Harriet know so she can follow up with their office to remind them beforehand – email harrietd@ms-society.ie or phone (01) 678 1600. **Please note that unfortunately we are very limited on the numbers of people we can bring into Leinster House, so this event is invitation only. However if you wish to show support on the day Wednesday 31st May, you are welcome to come along for photos at 10:30 am outside Leinster House gates and coffee in Buswells Hotel afterwards** ----------------------------------------------------------------------------------- Dear Deputy…. I live in your constituency and I am one of the 9,000 people in Ireland who has multiple sclerosis (MS). You should have recently received an invitation from the office of Senator Jerry Buttimer, asking you to attend an AV room briefing on World MS Day, Wednesday 31st May, at 10am. This briefing will be delivered by the Multiple Sclerosis Society of Ireland (MS Ireland) and Novartis. There will also be an opportunity to meet representatives from the organisations and people with MS in the Leinster House coffee dock beforehand, from 9 am. I would like to ask you to show your support to me and the thousands of others like me by attending this event. A new report on MS and quality of life will be launched and MS Ireland will be highlighting some of the problems that people with MS in Ireland face including: Long waiting times to see neurologists Long waiting times to access MRI scanning Lack of supports in the community such as neurorehabilitation services and home care Difficulties retaining employment I would be very grateful if you could take the time to go along to learn about the issues and the potential solutions that MS Ireland are proposing. Yours sincerely,
This week Aoife Kirwan articulates her many MS related fears and why she thinks MS is a bit like Ramsey Bolton! When I first thought about a blog dedicated to fears, I was a bit reluctant to start it. I do have many MS related fears but I don’t often give myself time to really think about them. My mind wanders, one thought leads to another and as they travel, rationality gets lost along the way. It’s difficult to articulate my fears into some sort of logical order that you might be able to read and make sense of, because quite often I can’t make sense of them myself. I know that MS has the potential to affect me far more than it does now. Knowing the possibilities doesn’t cause fear for me; it is in the not knowing that the fears originate. I like to be informed. I feel more in control when I know the possibilities with MS and I think of information as a sort of armour. The more I know, the more I can do to help myself, to protect myself. Since diagnosis I have been lucky in terms of my relapses, I haven’t really had many and anything that I did have was quite minor and disappeared as fast as it set in. I do feel a bit like a fraud at times- I have MS but I am pretty symptom free (apart from fatigue and concentration issues). Although I am aware of the possibilities, either I have deluded myself or I have mindfully created a ‘safe bubble’ as a coping mechanism to protect me from unexplored fears in my mind. My mind contradicts itself. Sometimes I feel like I don’t have MS, but I always know I have it. I always know the reality of the situation. I’m sure some of you have watched Game of Thrones, and for those of you who haven’t watched season 6 yet *spoiler alert* skip to the next paragraph - MS is a bit like Ramsey Bolton. The scene where he is shooting arrows at Rickon Stark as Rickon tries to run to safety reminds me of how I feel about MS. I am running, hoping, but also knowing that MS has a long reach and I will eventually be hit by that arrow. Worse than Ramsey killing Rickon Stark, it was how Ramsey dangled freedom in front of him, having him run towards it and then killing him anyway. I am moving through life, carrying on – but the fear of being struck by the MS arrow looms over me because I never know when it’s going to happen. At least knowing the possibilities helps me protect myself, that’s what I mean when I say that information is like armour. If I’m well informed I can help myself, keep myself well and give myself the best chance possible. I just want to do so much with my life before that arrow hits. I fear not being able to live an ‘ordinary’ life. I look at people my age and often think about how it must be so easy for them not having this extra baggage, but everyone has baggage of some sort! The society we live in is very false. Social media has most definitely had a huge effect on me and people my age.The likes of Instagram and Facebook are filled with pictures of people's seemingly incredible lives. People seem to push the positive things forward, and I am no exception to this. I know that people get to where they are going in their own time, and that there are no timescales for achieving life’s dreams, but when you fear being out of the work because of MS, the urge to succeed in a short timeframe escalates greatly. I fear not living my life fast enough, not achieving what I want while I can. It's important not to feed into this but its difficult. Then, I remind myself of this quote I read a while back, ‘A flower doesn’t think of competing with the flower next to it, it just blooms’. Just bloom.
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24 May 2017: Weekly group Physiotherapy Class for people with MS starts 26th April - 31st May 2017
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