MS Ireland
Informing, Supporting and Caring for the MS Community
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NEW Research shows that 44% of Irish people have poor understanding of the symptoms and nature of Multiple Sclerosis (MS)[1] 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&...
Published by MS Ireland on Wednesday May 22 2019 08:44 AM
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 wi...
Published by East Wicklow Branch on Monday May 20 2019 11:38 AM
Local Authority and European Parliament Elections With Local Authority and European Parliament Elections around the corner, now is the time to raise local issues with candidates seeking your vote. MS Ireland are members of the Disability Federation of Ireland (DFI) and the Neurological Alliance ...
Published by MS Ireland on Monday May 13 2019 01:05 PM
Internet services and supports for family carers Do you have 10 minutes to answer a few questions about internet services and supports for family carers? We know that a lot of family carers rely on the web for information, supports and socialising when unable to leave the house due to their car...
Published by Care Alliance Ireland on Wednesday April 17 2019 09:27 AM
FDA approves the drug Siponimod, to treat people with active secondary progressive MS The US Food and Drug Administration (FDA) has approved a new drug, siponimod, to treat MS. The FDA decision approves the drug to be used for relapsing forms of MS, including for people with secondary progressi...
Published by MS International Federation (MSIF) on Friday March 29 2019 11:06 AM
Save the date MS Ireland's National MS Conference Saturday, 21st September 2019 in the Radisson Hotel, Limerick. Stay tuned for updates!
Published by MS Ireland on Monday March 25 2019 09:40 AM
NEW Research shows that 44% of Irish people have poor understanding of the symptoms and nature of Multiple Sclerosis (MS)[1] 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.[2] 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,[3] 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. [1] Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019. [2] MS Ireland website Available here [3] 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.
Local Authority and European Parliament Elections With Local Authority and European Parliament Elections around the corner, now is the time to raise local issues with candidates seeking your vote. MS Ireland are members of the Disability Federation of Ireland (DFI) and the Neurological Alliance of Ireland (NAI). We are supporting their campaigns to make disability and neurology top priorities for candidates in both the Local Authority and European Parliament Elections. We are asking you to get involved too! Local Authority Elections Accessibility Are there accessibility issues in your area? Are there uneven pathways? Are there pedestrian lights that don’t give you adequate time to cross the road? Think about the accessibility issues you face locally. Ask your local authority candidates to commit to ensuring local public services and buildings are accessible for people who live with a disability. Participation Are you aware if people living with disabilities are involved with current decision-making structures locally? Can your local candidate tell you about Public Participation Networks? Ask your candidate to commit to ensure that people living with disabilities are encouraged to take part in local decision making. Planning Is your local candidate aware of the United Nations Convention on the Rights of People with Disabilities (UNCRPD)? Do they know what changes need to be made locally to comply with this convention? Ask your candidate to commit to ensuring that your local authority publishes its implementation plan for the UNCRPD by 2020. Don’t forget to mention the MS Care Centre Business Case In addition to having the power to influence local change, candidates for local authority often have the capacity to raise issues with TD’s and Senators. If a candidate asks for your vote, please make them aware of the MS Ireland Care Centre Business Case and ask them to raise the issue with Elected Local Representatives. The Care Centre Business Case can be downloaded here European Elections European Parliament hopefuls are being asked to pledge support in a number of key areas; Accessibility & Equality Ask European Parliament candidates to commit to making products, services and infrastructure accessible to people with disabilities and to stop discrimination. Ask European Parliament candidates to commit to working at and EU level to ensure equitable access to treatments, services and supports for people with neurological conditions. Investment Ask European Parliament candidates to support the investment of European funds in persons with disabilities. Support Ask European Parliament candidates to support the aims and objectives of the Members of European Parliament (MEP) interest group on Brain, Mind and Pain. Ask your European Parliament candidate to work at EU level to increase awareness of neurological conditions as a major public health and social care issue. Ask candidates to commit to their support on Twitter using #DisabilityVotesCount and #LoveYourBrain2019 Further information: www.disability-federation.ie www.nai.ie
NUI Galway are recruiting Applications are invited from suitably qualified candidates for a part-time, fixed term position (20% FTE) as a Patient Representative Research Assistant with the Discipline of Occupational Therapy at the National University of Ireland, Galway. This position is funded by Health Research Board and is available from July 1st 2019. This is a specific purpose contract circa 30 months. Information on project: The post is an exciting opportunity to be part of a research study of a cognitive rehabilitation intervention for people living with multiple sclerosis. Some people with multiple sclerosis have cognitive symptoms (e.g. difficulty with memory, processing information, attention) that impact their daily lives. The lead researcher has developed a new occupational therapy programme for people with multiple sclerosis that aims to help people deal with these symptoms. The programme will be assessed in this study. How to apply: Applications to include a covering letter, CV, and the contact details of two referees should be sent, via e-mail (in word or PDF only) to Dr Sinéad Hynes at sinead.hynes@nuigalway.ie Please put reference number NUIG-079-19 in subject line of e-mail application.Or by post to Dr Sinéad Hynes, Lecturer in Occupational Therapy, School of Health Sciences, Áras Moyola, NUI Galway. Closing date for receipt of applications: Friday 31st May 2019 at 5.00 pm Interviews are planned to be held on 11th June 2019 All positions are recruited in line with Open, Transparent, Merit (OTM) and Competency based recruitment. National University of Ireland, Galway is an equal opportunities employer.
This week Mary Devereux talks about falling and how she is dealing with the impact of Primary Progressive MS on her life and the lives of her family members. I have fallen… I could fall up a stairs, down a stairs; going up a footpath and going down a footpath and often I have tripped on...nothing. My foot sticks to the ground, my ankle or knee will simply stop working and I fall. Sometimes I will jump awake from a sleep with the sensation of falling. Falls are part and parcel for many people with Multiple Sclerosis. Falls are something we endure but also work hard to prevent. Muscle weakness, spasms, coordination problems, foot drop and numbness are all common MS symptoms that increase our risk of falling. More often than not, falls are unpreventable. I used to have SO many more suit jackets but no trousers to match because they were the casualty of my many falls. The first reaction I have when I fall is one of embarrassment; the second is to get up as quick as I can and walk as fast as I can, not looking right nor left and hoping no one has seen me. These are my first reactions despite any pain I may be in. Some of my falls are my own fault, like when I am over-tired but still insist on carrying out a task instead of listening to my body. Then foot-drop hits and all of a sudden I am having a close encounter with the floor. Or if I am carrying too many things at once instead of slowing down and carrying out the task in a safer and more thoughtful manner (that’s a whole different conversation for another day!). When your tendency to fall is no longer funny to people, you see the worry on their faces. That worry often leads to attempts to protect you. It begins with “don’t climb that ladder” or “don’t go up to the attic”, then “don’t stand on the chair”... all things I would have done before diagnosis without batting an eyelid. Once I fell down the stairs, couldn't stop myself and heard the crunching of bones as I tumbled. The things I have been running away from I now have no choice but to allow them to be part of my life. They minimise the risk of falling and therefore the injuries I might get from falling. Things like a cane, a rollator, the bed rail, the non-slip mat on the bedroom floor, the second banister rail, the shower chair... the list goes on. I learned early on with this disease I had to help myself in order to survive; if my wellbeing and survival comes by way of special equipment, so be it. My latest addition to falling has been in the middle of the night. Sometimes I wake up from pain, try to sit at the side of the bed fully expecting my feet to be my anchor and all of a sudden my feet are sliding out in front of me. I know I’m going to hit the ground and there isn’t a thing I can do to stop it. I scream, wake the house and have to accept the help to get up. Then I spend all the time apologizing for it. What do I fear most about falling? The look of fear on my loved ones’ faces. The slow ebbing away of my confidence and independence. This progressive disease is a thief that comes any time of day or night and never leaves empty handed. The MS thief always takes a little bit of me with it.
is a campaign about hope, that together we can raise funds to accelerate Irish and global research into MS and continue to provide services to over 9000 people living with MS In Ireland. Join the campaign NOW!
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