MS Ireland
Informing, Supporting and Caring for the MS Community
Please read on for a very exciting announcement from Dr Susan Coote, Physiotherapy Lecturer, Deaprtment of Clinical Therapies at the Univeristy of Limerick. "I'm delighted to announce that we have funding for three postgraduate studentships starting in January 2015 with the team at UL...
Published by MS Ireland/Susan Coote on Monday December 15 2014 11:20 AM
Catch up now Recently the MS International Federation (MSIF) hosted a webinar on progressive MS. You can watch it here. The Progressive MS Alliance is working together to connect resources and experts around the world and drive a global research enterprise that will develop the solutions to end...
Published by MS Ireland on Monday December 01 2014 11:55 AM
Earlier today RTÉ's Morning Ireland featured a segment on the impact of losing access to Fampyra on two people with MS. The feature included an interview with Meath native Violet Conway, who has been forced to stop taking Fampyra after her pharmacy quoted a price of €400 per month f...
Published by MS Ireland on Wednesday November 19 2014 10:19 AM
Public Lecture on MS Title: Uncovering MS: The Science and Medicine of Multiple Sclerosis When: Thursday, 20th November 2014 Venue: Science Gallery, Trinity College Dublin Time: 6-7pm *No booking necessary* Guest Speaker: Professor Kingston Mills, Professor of Experimental Immun...
Published by MS Ireland on Monday November 10 2014 10:55 AM
New resource from MS Trust Making Sense of MS is a new resource for people who have been recently diagnosed with Multiple Sclerosis(MS). The postcard-sized booklet provides a brief introduction to MS and answers the questions most commonly asked after diagnosis. What is MS? About MS...
Published by MS Ireland/MS Trust on Friday November 07 2014 01:41 PM
“Hope” is a word full of meaning. A heavy-weighing word too. People with MS cling onto hope because at the moment there is not much else we can do. I’d like to think that I have my MS figured out pretty well. I know what I want and don’t want for myself. Is life not...
Published by Willeke Van Eeckhoutte on Thursday November 06 2014 11:00 AM
An article appeared in the Irish Independent yesterday which suggested that people with multiple sclerosis may see a worsening of symptoms if their intake of salt is high. The article says that according to the Journal of Neurology Neurosurgery and Psychiatry, researchers assessed the blood and ...
Published by MS Ireland on Monday October 20 2014 12:31 PM
Sativex not cost-effective The National Centre for Pharmacoeconomics (NCPE), which assesses the potential benefits and costs of new medicines, is once again in the spotlight following their ruling that Sativex is not cost-effective at the price quoted by its manufacturer, Almirall. This means th...
Published by MS Ireland on Thursday October 09 2014 10:29 AM
Article appears on The Journal An interesting article has popped up on The Journal this morning, written annonymously by a woman with MS. We think it's an interesting read and like anything in life, your decision to make your condition public is yours and yours alone. As the author says outright...
Published by MS Ireland on Wednesday October 08 2014 01:06 PM
Government urged to think of families in crisis As a member of both the Disability Federation of Ireland and Care Alliance, we strongly support their joint call (with several other organisations) for funding for services to be restored before any new tax cuts are introduced in Budget 2015. The ...
Published by MS Ireland on Wednesday September 24 2014 10:07 AM
Monday, November 19th is International Men’s Day, a celebration of the positive value men bring to the world, their families and their communities. Today Keith Byrne shares his experience and talks about ‘manning up to MS’. I've been lucky to share my life with some great men. My Dad, my Granddads, extended family members, colleagues and friends. I think that's what made it so hard for me to initially open up about my MS diagnosis. It was as if I didn't belong in the same category as these men that I idolised. I in no way tick any of the pre-requisites society associates with being a ‘manly man’. I'm not the strong/silent type or ‘tall, dark & handsome’ at 5ft. 4 and bald. There is also the statistic that more than twice as many women are diagnosed with MS than men. I was a gamma male, never to be an alpha. Yet being diagnosed with MS awoke a strength in me that I always knew was there yet I never felt I had a reason to channel it. Once I came to terms with my diagnosis things started to improve both mentally and physically. This didn't happen overnight. It took a number of months as well as discussions with my MS nurse, nutritionist and my close family too. Eventually, after my first ‘MS Newly Diagnosed Day’ I gathered the strength to come out of the MS closet. Talking about my diagnosis is something I've learned to be very comfortable with. I've since done newspaper and radio interviews. I also started seeing a counsellor. Over the summer, I took part in a video for my job to promote mental health awareness. As part of the promotion for the video, I was asked to speak to a group of approximately fifty of my peers (most of whom I'd never met in person). Each scenario has been a massive challenge as each time I felt totally out of my comfort zone. I can develop an inherent shakiness in these circumstances and I'm conscious that might come across when I'm talking to a crowd of people. Yet I find each time I challenge myself, I’m a little less nervous and little more brave the next time around. It can't be underestimated how much stress affects our health. I'm intentionally putting myself in situations where my confidence is stretched to its core. It might sound like I'm bringing unnecessary burdens upon myself but there is method to the madness. I feel that, by deliberately challenging myself, I might be that little bit more prepared for situations that are out of my control. I wouldn't say I do this on a daily basis. Ultimately, I have relapse remitting MS From time to time I need a break away from everything. Outside of the daily challenges caused by MS, like fatigue and brain fog, my biggest challenge to date was the Dublin Marathon at the end of October. In the 3 and a half years or so since my mobility and vision returned back to a somewhat acceptable level I've been trying maintain an active lifestyle. A couple of lunchtime runs a week and maybe a longer one at the weekend led to me signing up for the marathon. The crowds of people out showing their support from the outset of the 26.2-mile trek was so uplifting. I especially felt humbled when I was struggling around mile 20 and I got a pat on the back from a guy as he ran past wearing the same TeamMS t-shirt as me, "Come on pal not long to go, you can do it". Thanks for the motivation and I'm proud to say I did do it! On the way into the marathon I met a man from Cork who was in Dublin for the day just to run it. We shared a taxi into town. He told me he was 66 and on his 313th marathon. An unbelievable achievement by any means but he also said he only ran his first one in 1999. I'm sure he had his reasons for starting something so taxing relatively late in life and it made me think; we all have our own path to follow and sometimes we get knocked off track. MS has certainly changed the course of my path. Perhaps, in some strange way, it's helped point me in the right direction. I no longer feel inferior to the men who inspire me. I have gained the awareness to realise they already see me as their equal. To all the men out there, fellow MSers, Carers, well-wishers and generally sound lads I'll leave you with this quote by Liverpudlian songwriter John Power: "Someone will always be more than I'll ever be so then I'll be myself"
Now open for applications The IPPOSI Patient Education Programme 2019 is now open for applications (Deadline for receipt of applications midnight on Sunday, November 18th 2018). The programme delivers training for patients, carers and advocates living in the Republic of Ireland on health research and innovation. This includes education modules on clinical trials, medicines regulatory affairs and health technology assessment. The programme is designed to enable and empower more patients and patient advocates to work effectively with Irish and EU-level health research & technology partners, agencies & authorities. Further details on the programme and how to apply are available here. Potential candidates may be interested in these short videos, which capture student feedback on last year’s pilot programme and their reasons for taking part.
Save the date... 29th November 2018 Are you aged 18-35 years? Book 29th November in your diary. MS Ireland kindly supported by Novartis will host an exciting meeting in Dublin to explore the MS issues affecting our life. Date: Thursday, 29th November 2018 Location: Davenport Hotel, Dublin 2 Time: 6pm More details to follow....
Living with a Neurological Condition in Ireland Neurological Alliance of Ireland (NAI) have launched a new survey "Living with a Neurological Condition in Ireland" to examine the practical issues faced by people with neurological conditions & their families. You can complete this survey if you are an adult (over 18 years), diagnosed with a neurological condition or if you are a family member currently caring for an adult with a neurological condition. The survey should only take 10-15 minutes to complete and your replies are completely confidential. The closing date for responses is Friday 14th December 2018. Get in touch If you have any questions about completing the survey, you can e mail sbradley@nai.ie or call (01) 8724120.
This week Willeke Van Eeckhoutte shares with us the value of writing about living with MS. She’s an award-winning, irrepressible blogger and we are delighted to have her continued contribution to the MS and Me team. When tasked with an article about writing and MS, my mind always does summersaults because what could be better than writing about writing? My love for anything written has been as old as I am young. Being a proud library member, ex-library assistant and forever-friends with books, putting pen to paper was always going to happen. Two decades ago, MS crashed headfirst into my life. There was no introduction, no. This was MS, a foreign entity that lacked basic social skills. Writing was an expert psychotherapeutic net that caught me when I was in free-fall after hearing, “You and MS”. Then I went to “Teach your environment about MS because too many people have the wrong idea about it”. Teach I did, only not quite as professionally as I would have liked because of lack of time. That was until my pen found its way to a notebook about two years post-retirement. In 2011, I created a blog, Ireland, MS and Me and slowly, writing about Ireland morphed into writing about MS. I didn’t want an overly edited site where the relationship between MS and I would be squeaky clean. No, I wanted it to be warts and all- raw, simple and calling out everything that affects me physically as well as mentally and emotionally. After all, I wanted to connect with others who were in a similarly devious and loveless relationship with their illness. As the mission statement on my blog says, I tried to make sense out of MS nonsense together with my readers. The following two years, I began to see how writing about MS brought a significant shift in my thinking. I was discovering what the new me was all about. It was as if portable X-ray images continuously peered deep inside my mind. Stress levels went down and clearer thinking about MS emerged from what I thought would be an increasingly dark, unhelpful attitude. Unshed tears turned into words and my agony healed into non-judgmental self-acceptance. Writing like this came at the right time and in the right place for me. Because I love writing by hand, I feel I can address my emotions that surround life with MS on a deeper level than when I write on a laptop. My hands, brain and environment are locked in a vacuum that is the present tense- the Here and the Now. Paper is a natural listener, one that will not leave when your sixty minutes with a therapist is over. There is an instant connection, even if your Wi-Fi goes offline. MS subconsciously began to take a step back. Of course, my symptoms were still there, but I started to recognise their value to my writing. As George Bernard Shaw once said, ''I enjoy convalescence. It is the part that makes the illness worthwhile.'' In my case, the worth of writing is felt especially when anxiety shows up during the trigeminal neuralgia attacks I get. The pain gets to hear the sound of my pen flowing on paper and that powerful pen is saying, “Shut up, you! Get the hell out of here!” The benefits of writing are legion. Writing has been scientifically proven to boost your immune system, help you feel happier as well as sleep and think better on a long-term basis. It has shown me that it is more than just a tool- it’s an excellent way to learn not just about MS but about yourself as the person you never thought you could be. As such, the MS voice in my own blog has ‘grown up’. I have been recognised by Everyday Health for having “a more jovial approach to MS while consistently ending posts on a happy note”. This is how I feel about my life with multiple sclerosis now. An often slapstick version of what an elegant woman should be like in an often-hilarious back-and-forth between MS and me. Writing and MS have given me so much more than just giggles. This year has been very eventful what with changing DMTs and writing about it in ‘3443 Needles’. Quite unexpectedly, I won the 2018 Best Blog Post award in the Ireland Blog Awards competition last week, something I never thought possible. MS and writing? Definitely something to consider! Check out Willeke’s blog Ireland, MS and Me
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18 November 2018: Physiotherapy based exercise for all level.
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