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Research shows online supports vital as majority of carers feel isolated in their role Ireland’s 360,000 family carers are being celebrated this week as National Carers Week takes place across the country with scores of events being organised specifically for those who care for their loved ones. However, research being published today (Monday) as part of this 13th National Carers Week, indicates that many family carers continue to be unable to leave their own home and depend heavily on online supports for information, support and social connection. Care Alliance Ireland, in partnership with the eleven other National Carers Week partner groups recently undertook a survey of 300 family carers across Ireland. The full report is available here Over half (59%) of respondents said they felt lonely or isolated either ‘often’ or ‘always’, with a further 37% saying they ‘sometimes’ felt that way. Only 3% of respondents said they could ‘always’ make it to social and support events that they would like to get to – with almost a quarter (23%) saying they can ‘never’ get to those kinds of events. Over half the respondents are members of online support groups and 76% have looked up information regarding the health of their loved one online. Speaking about the research, Zoe Hughes, Policy & Research Officer with Care Alliance Ireland said; “It’s clear that the lack of on-the-ground supports like respite and home care is having a huge impact on family carers being able to take a break and seek supports – meaning that online supports are increasingly become vital for many of those who are isolated and lonely in their role”. Following from the results of the research, Care Alliance Ireland are hosting an online coffee morning for those family carers who are unable to make it to the many events happening across the country from 10-16th June. Carers who would like to take part should check the National Carers Week Facebook Page for details.
This week Robert Joyce shares his thoughts on World MS Day and invisible symptoms Every year we take one day, May 30, to tell the world about Multiple Sclerosis. This post is on ‘our’ blog where we share our experiences of MS and its impact on our lives. I am the audience we write for and I know when I write ‘pins & needles’, your heads will nod. You have experienced this and many other symptoms, many of which are invisible. This World MS Day we are going to share with the wider world what it is like to have invisible symptoms, and the impact they have on our lives. In the last year there have been two projects showing how these (invisible symptoms) feel. In Ireland we had the MSunderstood Cafe starting as a pop up experience in Dublin and then it toured the country in a bus. When someone without this disease walked in and tried to move an impossible heavy chair or couldn’t focus on the blurry menu, they felt for a moment, this illness. The second project was the film ‘Hidden’ produced by Shift.MS. It followed a young woman on her journey through the day and you could see how difficult it is experiencing something you cannot share. On this day our aim is to move these stories outside of our group to the wider community to share them with people who have no experience of MS. Experiences like the crushing fatigue that makes every movement leaden and difficult, to lost sensation in our fingers making the world feel like some coarse sandpaper, limbs refusing to move like they once did, pain manifesting in so many ways in so many places or L’Hermittes that causes an electric shock to run from your neck to your bottom just because you nodded your head! The world will not know what it is like to live with MS unless we, the people in the MS community, tell them. On this day the spotlight will shine on us all over the world. If you are from Connemara, the USA or India, the message will be the same. We have invisible symptoms we cannot escape from and we cannot fix. MS is incurable. By sharing this message we will be pushing to get more understanding of our daily lives and to get more research to find solutions to our medical needs. On the World MS Day website you will find events taking place all around Ireland and the world. We encourage you to take part in any way possible. It can be online through Twitter, Facebook or Instagram, or maybe at a coffee morning hosted by your local branch. Take part so the wider community, your local community, will understand a little bit of what it is like to live with Multiple Sclerosis.
My name is Maggie Green… I live in Donegal with my two beautiful children, Abigail (8) and Conor (7), my partner Danny and my Great Dane Blue. I was diagnosed in October 2016 with Relasping Remitting MS ( RRMS) and to say that it came as a shock is an understatement! What I thought was a trapped nerve, turned out to be a life changing diagnosis! Initially, we were terrified and all I could focus on were worst case scenarios, but when I was referred to Professor Niall Tubridy in St. Vincent's Hospital this was a big turning point for me. He helped me to realise that I just needed to keep living my life and to manage my MS as effectively as possible. He also helped me to focus on the positives rather than the negatives. Overall, I have been pretty lucky and I count my blessings every day! I work full time as a primary school teacher, teaching children with autism in Letterkenny Educate Together National School and I love my job. The children I teach are incredible and they teach me something new every single day. My Support Network I come from a very big family and they have been wonderful. They are always there for us when things get tough, and sometimes when you live with MS things can get particularly tough. They are always just a phone call away ready to help in any way they can. My mother and father have been unbelievably supportive and I don't think that we would have gotten through the last few years without them. My children Abigail and Conor know that I have MS and know that sometimes I get very tired easily. They know that my body doesn't always do what I want it to do! We've explained to them that it’s a bit like a computer that has a few faults! Why am I taking part in the Mini Marathon this year? I want to raise more awareness about MS. I want to help raise funds for MS Ireland and the amazing supports they provide to people like me living with MS. I can't change the fact that I have MS but I feel that I need to do something so my something is trying to contribute to the MS community in some small way. I feel really lucky that I am physically able to do this. Although I might not be saying that by the end of the Mini Marathon!!! My partner Danny and I are getting married four weeks after the Mini Marathon and I cannot wait to walk up the aisle and share our special day with family and friends. We have come through a lot but MS is just one part of our story. You can still join Maggie & Team MS Ireland on the 2nd June. Sign up today! Or get in touch with Melanie at email@example.com #GetActiveForMS
NEW Research shows that 44% of Irish people have poor understanding of the symptoms and nature of Multiple Sclerosis (MS) Research study commissioned by MS Ireland and Novartis Ireland to mark World MS Day 2019 explores the public’s awareness of the visible and invisible symptoms of MS 93% of people in Ireland claim to be aware of MS, more than 44% consider their understanding of the symptoms and details of the condition to be poor with nearly one third of respondents unable to list any symptoms related to MS.1 This new research conducted in April 2019 by IPSOS/MRBI, was revealed to mark World MS Day on 30th May 2019 by MS Ireland and Novartis who join with MS organisations around the world as part of the ‘My Invisible MS’ (#MyInvisibleMS) campaign exploring public awareness around the invisible symptoms of MS and the impact it can have on day to day life. Although more than a third of the population (37%) claim to have a family member, friend, or loved one living with MS, and 66% of people in Ireland believe they have a good understanding of MS, there are still some key aspects of the condition that remain unclear.1 When asked if MS was more prevalent amongst men or women, almost half (45%) of participants responded that MS affects men and women equally. In fact, MS is at least two to three times more common in women than in men. Nine thousand people and their family members live with Multiple Sclerosis across Ireland. Although MS is a progressive neurological condition that can affect a person’s health, lifestyle and relationships, many people with MS find ways to manage and cope with many of the effects and difficulties. Symptoms vary from person to person and each person is affected by the condition differently. Some of the symptoms of MS are immediately obvious. Reduced mobility is often the most visually apparent. Other symptoms such as fatigue, changes in sensation, memory and concentration problems are often ‘invisible’ symptoms and can be difficult to explain to others. Ava Battles, Chief Executive of MS Ireland said, “While many people are aware of MS and the more visible, tangible symptoms that it can cause, the effects of MS can vary greatly from person to person and can often be invisible to those around them. Through this research and our World MS Day activity we hope to raise awareness around the less visible aspects of MS and how it can impact on the day to day life of a person living with the condition.” Loretto Callaghan, General Manager and Country President, Novartis Ireland commented, “We are delighted to support MS Ireland on World MS Day and to bring the results of this research study to the general public. It is so important that the community of people living with MS in Ireland feel that their condition is properly understood by their peers and this is something that can only happen by spreading awareness through initiatives such as World MS Day.” Levels of awareness around the more visible symptoms of MS among the public are relatively high with almost 20% of those surveyed listing muscle degeneration, and 17% naming loss of mobility.1 Only 8% of people identified fatigue as a key symptom despite almost 90% of people living with MS reporting fatigue as a consequence of their condition.1, Commenting on the launch of the research findings, Professor Orla Hardiman, Consultant Neurologist at Beaumont Hospital, Professor of Neurology and Head of the Academic Unit of Neurology in Trinity College Dublin and the HSE National Clinical Lead for Neurology said, “The research findings highlight how prevalent MS is in our society today with nearly 40% of the population being impacted either directly or indirectly by the condition. It’s important that as a community we educate ourselves on the symptoms that affect the day to day lives of people living with MS, especially those that are not immediately apparent and less visible.” Sharon Henvey, World MS Day spokesperson said, “As someone living with Multiple Sclerosis for the past 10 years, World MS Day is a day that means so much to me and my family. It’s a day that shines a spotlight on the 9,000 people in Ireland living with MS and what life is like for us. The theme for this year’s campaign is visibility which I think is crucially important, as some of the symptoms I experience are unseen. I do at times feel that my MS is invisible which can be hard to explain to friends and family, so hopefully, the campaign can create awareness of these unseen symptoms” Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019.  Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019.  MS Ireland website Available here  Societal Cost of Multiple Sclerosis in Ireland 2015 [online]. Available here
Short Story Evening to mark World MS Day Greystones Scribbles - now in its tenth year, would like to invite you to an evening of original short stories at the Glenview Hotel on Thursday, May 30th for a 7.30 pm start until 9.00 pm. Admission is just €7 to include a complimentary glass of wine/soft drink. All proceeds to MS Ireland's East Wicklow Branch. Get in touch Text Mark Mitchell at 087 2453 193.
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