MS Ireland, as the representative body for the MS community, believe it is our obligation to address issues which impact on the lives of all people affected by multiple sclerosis. In order to address these issues, it can sometimes be necessary to campaign on behalf of change; change in attitude, change in understanding, change in policy with respect to how decision makers legislate on behalf of issues which directly relate to not only the standard of living, but the quality of living of those affected by MS. We acknowledge this change can only come about through persistence and perservance.
Time to Act - In March 2017, MS Ireland released ‘Time to Act – A consensus on early treatment’, a consensus statement on early diagnosis and treatment in MS. Based on a paper published by the UK MS Society in September 2015, this document outlines and reviews the latest research evidence regarding the importance of starting treatment with a disease modifying therapy (DMT) as soon as possible after diagnosis. In adapting this paper for the Irish context, MS Ireland consulted with a group of Irish neurologists with a specialist interest in MS. Time to Act contains detailed recommendations for policy makers and clinicians. The policy recommendations call on the Government and the HSE to invest in Ireland’s critically under-resourced neurology services, increase the numbers of consultant neurologist and MS Nurses, improve access to MRI scanning, develop an MS register and improve the systems for making new medications available. Download Time to Act here
Access to Medicines – in August 2015 MS Ireland released the Access to Medicines Campaign Handbook. The handbook aims to enable people with multiple sclerosis to access the medicines they need to treat their condition and impact debilitating symptoms including impaired mobility, severe fatigue and cognitive difficulties. It provides practical advice for people with MS on their medical rights and options as well as how to engage with the health system. The handbook has been accompanied by ongoing lobbying and awareness-raising. Download Access to Medicines Campaign Handbook
Neurorehabilitation – in conjunction with partner organisations in the Neurological Alliance of Ireland, MS Ireland is involved in campaigning for development of neurorehabilitation services. Read more about NAI’s campaign.
NAI launched the ‘We Need Our Heads Examined’ campaign for neurorehabilitation services on 23rd June 2016. Since the launch, campaign group representatives including MS Ireland staff have met with Simon Harris, Minister for Health, and other political representatives. The campaign has also generated considerable media coverage.
Sativex - is a cannabis based drug, which has been made available in other countries including the UK, to treat the symptom of spasticity (muscle stiffness) in people with MS. In 2014, Sativex was granted a license in Ireland so neurologists can prescribe it, however the HSE do not currently reimburse it as they do not deem it to be cost-effective, so it remains unavailable at present. MS Ireland has written to the Department of Health about this issue a number of times and in February 2017 we made a detailed submission to the HSE Corporate Pharmaceutical Unit which can be read here
You can also read our Briefing Document and Position Paper on cannabis-based medicinal products here
Home care - In September 2016, MS Ireland joined forces with a group of other voluntary sector organisations to call on the Government to invest in home care services. A group of 17 organisations came together on 27th September in an event outside Leinster House at which a number of people, including Sinead McArdle who has MS, spoke about their experiences of trying to access home care. Discussions between the organisations involved in this campaign are ongoing and follow up activities are planned for 2017 and beyond.
As a collective voice for the rights of people with MS we strive to use our influence to advocate effectively for the MS community. We endeavour to inform and educate wider society to the condition of multiple sclerosis, and through this greater understanding, to highlight the needs of those affected by the condition. While reacting to the current challenges faced in our ever-changing society, we also consider it necessary to look towards future challenges which will develop and to highlight these issues now in order to pre-empt growing problems.
To let us know about an issue you feel we should be campaigning, contact Aoife Kirwan: firstname.lastname@example.org
In the throes of the Christmas Season, Niall McGahon delves in his experience of MS and shares with us how he deals with the uncertainty by keeping things in the moment, in the day. Read on to calm…. I am forever amazed at how the small things that you take for granted when younger have such a massive impact as you get older. “The evenings will soon be on the turn….” is a saying from my Dad when I was growing up (and still is for that matter!). It meant one of two things: the evenings would be getting shorter or they were about to get even longer! I loved the thought of the latter as it meant come March, the evenings would be longer, school would nearly be over and golf was the only thing I had on my menu! This has changed over the years, but my core excitement of the longer evenings has not changed one little bit. Warmth returns, growth begins again and last Spring (2017) was so very special- we welcomed our first child. This only confirmed for me that Spring truly is the most wonderful time of the year. Life regenerates and the cycle starts again, fresh growth appears in the trees and the bright colours are abundant in the sky. As the season turns, I look to Spring because it is quite the opposite of what I am now facing in my health. There is little regeneration and the cycle is not restarting. If anything, its quite the opposite and we are essentially trying to stop MS dead in its tracks; stop it so that I retain function and stay well. This is a particularly difficult time of year for me because it was 4 years ago this month that I found out that I had MS and my life was changed forever. Now, I am living life from day to day, week to week, month by month. Staying in the moment is welcome. However, not knowing how I am going to be when I wake up in the morning can impact greatly on the day and night I have. It can also have an impact on those around me- I am difficult to decipher and who knows what version of Niall they are going to get on any given day. On some days, I am nothing short of a pain in the ass. I try and catch myself but…thankfully, I have a massively supportive family near and far, a beautiful home, great friends and a good job. When I do wake up in pain (most days lately) I know its part and parcel of what I’ve got to deal with, difficult as it may be. Little by little, I am getting better at being kind to myself. I keep it simple. Daily, I have one of two choices to make- I can either have the outlook of Springtime, where the light is bright, where there’s warmth and life is in abundance or I can close my mind and let the winter darkness come over me. Yes, it is a difficult time of the year but I choose to use my Spring outlook and grasp whatever life has in store…no matter what way the wind blows this winter.
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 email@example.com or call (01) 8724120. originally published 9.11.2018
This week Grace Kavanagh writes about what the International Day of People With Disabilities means to her and what we as individuals understand about living with a disability. I’ll forgive you if you weren’t aware that there was such a thing as International Day of People With Disabilities. I wasn’t either before some research. It is an initiative set up by the UN in 1992 to promote understanding of disability issues and to raise support for those with disabilities to enable them to participate equally in society. It is held yearly on December 3rd and the theme for this year is “Inclusion is for everybody”. The day is recognised at the UN headquarters in New York with organisations and groups around the world encouraged to hold their own events. I love the idea of social equality but think in reality we have a long way to go. Raising awareness is one thing but raising understanding and empathy is quite another and this is where I think the focus should be. So what do I as a person with disability think the International Day of People With Disabilities should include? I don’t think any one person can understand all the challenges people with differing disabilities face and I certainly can’t speak for everyone. I do however think that we all need to think a bit more about other people and try not to be entirely caught up in our own worlds. We have all been guilty of unknowingly causing issues for others by our actions so here are some things to consider in our everyday lives that might have an impact on people with disabilities. ● Viewing things from the perspective of the person with a disability would help us all to see how our actions can impede others. It could also help us to be less irritated or frustrated when we understand the challenges the other person is facing. ● Experiences that give an insight into the life of someone with a disability can really boost understanding. For example the MSunderstood cafe gives people the opportunity to view the world from the perspective of someone living with MS. I’ll be sending my husband when it comes back to Dublin! ● In a similar way, I know of a charity for the visually impaired that requires employees to spend time wearing glasses that distort vision and use a wheelchair so they understand the difficulties people they work with may have. ● I taught computing to a lady with hearing difficulties. She had a sign language interpreter who enabled her to be an equal participant in the class. I learnt to address my comments to her and not her interpreter, just as I would with any other member of the class. ● Think before you park your car! Parking on pavements or up on the kerb leaves no safe route for people in wheelchairs, while parking in disabled bays when you don’t need to means a person with a disability can’t use the facility. ● Don’t get me started on the pavements in Dublin! They are a hazard to everyone but in particular those with mobility issues. Try not to add to the problem by leaving obstructions like bins on the path. Disabilities aren’t always visible. You don’t know what someone else is coping with just by looking at them. They could be living with chronic pain but look fine. Try not to judge what you don’t know. Check out Grace’s blog, www.mycrazymslife.com for her perspective on living with multiple sclerosis. Join in the activities of the UN International Day of People With Disabilities click here
This week Aoife Kirwan writes about the upcoming event for Young People with MS on 29th November 2018 (6pm-8pm) in the Davenport Hotel, Dublin. Register for the event here For almost eight years I have been living with the knowledge that I have MS. My diagnosis came at a time when I was just getting started in adult life. Years of education were behind me and I was in the final months of my degree. Prior to my diagnosis, I had a very clear vision of what I wanted in life, what I wanted to do, to be, to become. This moment in time changed everything for me. The future I had envisioned for myself was now unclear. The main symptom that I had was optic neuritis in my right eye which left me with just about 2% vision in that eye. I had been working towards becoming a secondary school art teacher. I felt like I had to say goodbye to that idea, as I didn’t feel it would be a secure enough given the issue I had with my sight. I felt like I was at a crossroads. It was still early enough to change my mind about the best path forward but that didn’t make it easy. The promises that I had made myself were destined to remain unfulfilled. I feared what was to come because for years I had been looking in one direction and this diagnosis forced me to look around. It made me uncomfortable. The way I felt about myself and the way I felt the world saw me, changed. My sense of identity was shaken. I didn’t think a support group would be my kind of thing. I didn’t like the diagnosis; I was all about trying to be positive and felt that the niggling negative thoughts might grow stronger if I saw other people who were more seriously disabled by MS than me. What I didn’t realise then was that I needed connection. To speak to others my age who were living with MS. I needed information that was relevant to me, support around decisions that we often come up against in early adult life like education, relationships, self-acceptance. Early adult life sees people lay the foundation blocks for their future and I needed support with making my foundation solid. Next Thursday, November 29th MS Ireland, in collaboration with Novartis, is hosting MS Explored, an information and support event for young people living with multiple sclerosis (18-35). Speakers include Moira Tzitzika who will talk about Relationships and Intimacy. Moira has a PhD in Psychology and specialises in Disability Counselling and Sexual Medicine at the European Society of Sexual Medicine. Psychologist Karen Belshaw, founder of Stress Management Ireland, will speak on Mental Resilience and past-president of the Union of Students Ireland, Michael Kerrigan will show us Road-mapping for Success. This event will take place in the Davenport Hotel, Dublin from 6-8pm. A live stream will be available for those who are not able to attend in person. Students unions around the country have been incredibly helpful in organising on-campus hubs where the live stream will be shown. Questions for the speakers can be sent in by direct messaging our social media platforms. The event is free to attend but please register using the following link: https://www.eventbrite.ie/e/ms-explored-meeting-tickets-52707199653 This is a great opportunity for young people living with MS to meet with their community. Connecting with others who are at a similar stage of life and navigating similar issues can be a very empowering experience and I look forward to seeing you there.
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"
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