Date/Time: 27 July 2018 - 11:00 to 12:00
Organiser: South East: Una Goan, Community Worker
Region: South East
Date/Time: 28 July 2018 - 11:00 to 13:00
Organiser: South East:Katie Hourigan
Region: South East
Date/Time: 28 July 2018 - 11:00 to 12:00
Organiser: South East: Una Goan, Community Worker
Region: South East
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.
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 firstname.lastname@example.org 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
Following on from the success of the MSunderstood Café back in March of this year, we are delighted to announce that we will be bringing the MSunderstood Café in the form of a bus to various locations around the country! Check the schedule below to see where it is coming to near you! In case you missed out on the café in March, to give you an idea of what it involves you can watch the video here as to how this experiential café gave people a glimpse as to what it is like living with MS. The Café has been adapted on a specifically designed bus to provide people with a unique insight into what it is like to live with MS and some of the challenges they may face on a daily basis. MS Ireland hopes the MSunderstood Café Roadshow will build on the support created by the Café in March and highlight the urgent need for improved access to medicine and treatment for the management of MS. In recent years there has been significant improvement in medicine and treatment, however unlike other EU countries, the Irish market access system means people with MS here face significant delays. To discover more about the Patients Deserve Better campaign you can take action here We hope you are able to attend the Café on the day and please feel free to tell you friends, family and colleagues to come along! All proceeds raised on the bus will go towards MS Ireland. Day 1 Date: Sunday, 4th November Location: GALWAY, The Plaza, Eyre Square Time: 2pm Day 2 Date: Monday 5th November Location: TIPPERARY - Tipperary Town Plaza Time: 12pm Day 3 Date: Tuesday, 6th November Location: ENNIS, Abbey Street car park Time: 10am Day 4 Date: Wednesday, 7th November Location: LIMERICK, O' Connell Street, Load Bay Area at Brown Thomas Time: 10am Day 5 Date: Thursday, 8th November Location: CLONAKILITY, Emmet Square Time: 10am Day 6 Date: Friday, 9th November Location: CORK CITY, Mahon Point Shopping Centre Time: 10am Day 7 Date: Saturday, 10th November Location: WEXFORD, Quayfront, Wexford Town Time: 10am Day 8 Date: Monday, 12th November Location: BRAY, Supervalu, Castle Street, Co Wicklow Time: 10am Location: DUBLIN SOUTH, Dundrum Shopping Centre, Dublin 16 Time: 2pm Day 9 Date: Tuesday, 13th November Location:-CLONDALKIN, The Mill Shopping Centre Time: 9am Location: BLANCHARDSTOWN, Shopping Centre Time: 2:30pm Day 10 Date: Wednesday, 14th November Location: NAVAN ROAD, Tesco carpark Time: 9:30am Location: SWORDS, Main Street, Swords Time: 3pm Get in touch For further information contact Tom at email@example.com
Six of our MS & Me bloggers attended the National Conference last month. They tell us why they’ll be back again next year. In September hundreds of people with MS left their homes and traveled to Athlone to attend our national conference. The day prior most of the speakers who presented to us had spent the day with various healthcare providers, educating them on various aspects of the diseases and living with it. For those who could not attend, we had a live stream going out across the interweb to the whole world. Having the caliber of researchers in one room for people living with the diagnosis of MS, their family, friends, and co-workers was beyond brilliant. To mingle around others who know exactly what we’re going through and not have to explain – Important. A good number of the MS & Me team were in attendance and wanted you to know what they learned and why they’ll be attending the event next year. Perhaps these reasons might spark you to mark your diary for 2019 as well. 1. Use it or Loose it! As much as we hate to admit it, exercise is important, keeping the brain active (reading, writing, crosswords, games and discussions), and even standing rather than sitting are important in maintaining a healthy life with MS. Physical exercise can even improve the plasticity of the brain, slowing cognitive issues. 2. Take your Vitamin D! Think of it as a mandatory supplement for people with MS, for their families, and particularly for their children. 3. Advocate for yourself. Multiple sclerosis is not a one-size-fits-all illness. People living with MS have to realize that we know our bodies and our disease better than anyone else does. Don’t be afraid to question the Neurologist’s advice and recommendations, and to ask for more information. 4. The importance of Brain Health really is not promoted enough (or at all) in Ireland. Services we have here are dire relative to most of the rest of Europe. An initial neurology appointment should happen within 4 weeks. It takes many of us 8 weeks to simply get a prescription. 5. Words like “Palliative Care” and “Advanced Health Directive (AHC)” may seem like frightening words, but they are not. Palliative care is not necessarily end of life related. It’s about managing a condition with available tools. AHD are a way of letting our wishes be known to those we love. ADH should be discussed and updated regularly. 6. Early and aggressive intervention and treatment means better long term prognosis. Time lost is brain lost. 7. People who are engaged with MS research and MS resources live measurably better lives with their disease. Get engaged. Stay engaged. 8. Socialising can be as beneficial to brain health as crosswords. Granny always said that a cuppa with a friend was good for you 9. The genetics of MS are fascinating, and the island of Ireland has a wealth of knowledge to share with the rest of the world about the genetics of the disease. 10. Smoking is bad for MS. Like really bad. If you don’t smoke; don’t start. If you smoke; quit. If you’ve quit but relapsed into the habit; quit again… Now! 11. Some of the great minds of our age are focused on MS. Researchers from around the world came to update us on where their work has progressed and what they expect in the next years. Really remarkable stuff going on out there in the world of MS research. 12. Connecting with others with MS is important and really fun! The evening before the conference gave us a chance to get to know each other, compare stories, and have a laugh. Interestingly we all seemed to see the funny side of our crazy capers with MS and can understand one another about the difficulties. Oh, and it's a cognitive workout! We hope to see more of you at next year’s conference. It’s not about the big bad wolf of MS… It’s about the lot of us in the brick house, working together to find our best life. Multiple sclerosis or not. Watch presentations from the day: Professor Gavin Giovanonni: MS Overview and Quality of Life. Watch here >> Dr. Jens Bansi: The Importance of Neurorehabilitation in MS. Watch here >> Dr. Sabina Brennan: Healthy Brain. Watch here >> Dr. Kate O’Brien, Genomics Ireland: Identifying specific patterns in genes in people with MS so as to develop new diagnosis tools, treatments, and better our understanding of disease progression. Watch here >>
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