MS Ireland
Informing, Supporting and Caring for the MS Community
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First ever patient survey of outpatient neurology services now calling for responses The Neurological Alliance of Ireland (NAI), the umbrella representing over 30 patient organisations, in partnership with the National Clinical Programme in Neurology, has launched the first ever patient experien...
Published by Neurological Alliance Ireland on Tuesday October 17 2017 10:36 AM
Date for your diary! MS Research Explored free public lecture. Date: Thursday, 30th November 2017 Time: TBC Venue: Trinity Biomedial Sciences Institute, Trinity College Dublin More details to follow...
Published by MS Ireland on Thursday October 05 2017 01:40 PM
We are live streaming talks from our 'Living Well with MS' Conference in Sligo this Saturday, September 23rd. You can join us on the day from anywhere around the world... We are delighted to welcome our guest speakers: Dr. Orla Gray, Neurologist, Queens Hospital, Belfast @ 10am Dr. Deirdre Cor...
Published by MS Ireland on Wednesday September 20 2017 02:05 PM
Suvey Closed on Tuesday, 2nd October 2017 What is important to people with MS regarding treatment options MS Ireland is conducting a short, anonymous survey about disease modifying therapies (DMTs). This survey is open to anyone with a diagnosis of MS or Clinically Isolated Syndrome. You do not...
Published by MS Ireland on Tuesday September 12 2017 06:49 PM
30 years of the MS Readathon celebrated with Felicity Dahl Proudly supported by Heinz, over 10,000 Irish kids are set to embark on a one-month reading marathon this October in aid of MS Ireland The 30th MS Readathon launched on Monday September 11th with Felicity Dahl marking the milestone for ...
Published by MS Ireland on Monday September 11 2017 02:12 PM
and the lucky winners are... The draw for our Annual Summer Raffle took place on Friday, 21st July at our National Office. Taking some time out from her training for the upcoming Women's Rugby World Cup, Jenny Murphy popped into HQ for our Summer Raffle draw. We are delighted to announce this y...
Published by MS Ireland on Friday July 21 2017 05:00 PM
Global experts publish recommendations for overcoming challenges to improve clinical trials in progressive MS A special issue of Multiple Sclerosis Journal, sponsored by the International Progressive MS Alliance, has been published, containing papers that review the challenges and the potential solutions to improving clinical trials and their outcomes so that new treatments become available for people living with progressive MS. All of the papers are available to view and share Topics covered include: The evolving role of people with MS in clinical research - Some progress but more is needed Progressive MS trials: Lessons learned Targets of therapy in progressive MS Fluid biomarker and electrophysiological outcome measures for progressive MS trials
Hearing loss, or impaired hearing, is an uncommon symptom of MS, Helen Farrell discusses the affect it has on her daily life. There was a documentary on Lauren Bacall, actor, on television that morning, the movie star of Hollywood’s golden age. I had a virus, or so I thought, and I was taking antibiotics and feeling off-balance. It was nice to have the flat to myself and watch some tv biographies while my flatmates were at work. Suddenly, I realised I must be sitting on the remote control, as Bacall’s smooth voice trailed off into quietness. But how peculiar! The remote was beside me, and I wasn’t sitting on the volume button after all. Darts of fear shot through my stomach as I realised that the television was fine, it was the hearing in my right ear that wasn’t. In those 10 seconds, it disappeared totally, never to return. Two hours later I found I was unable to walk in a straight line or make it down the stairs, and I really started to panic in earnest. I thought I might have had a stroke. A hospital admission, an MRI and two lumbar punctures later, and I was told I had MS; that was 19 years ago. 1 in 1,000 of us in Ireland will be diagnosed with MS, but it is “exceedingly rare” to have permanent deafness from MS. Yep, I feel so goddamn special. Deafness often goes together with tinnitus, a roaring, grating, rushing noise constantly roaring in my deaf ear, but I don’t notice it any more. It’s amazing what we can adapt to and accept as normal. Another MS-friend has tinnitus too, but no deafness, so having tinnitus doesn’t necessarily mean you’re going to lose your hearing. A friend-of-a-friend with MS lost her hearing in one ear for six months, and then one day her full hearing returned. In fact, it’s far more likely that even if you lose your hearing that it will return, when you’ve MS. My case is not a common one. I believed for a long time that that my hearing would return too, but I eventually accepted that it was gone for good, or until they find “the cure”. To use a hearing-aid you must have some residual hearing. I have nothing, unless it’s over 80 decibels (like a loud motorbike) so a hearing aid would be useless to me. The neurologist and audiologist tried to locate the lesion that was causing the deafness, but they couldn’t pinpoint it. Because the sudden deafness happened during a severe MS-relapse, it’s nearly certain that MS caused it. I had severe balance problems during that relapse too, so it’s likely that a lesion in the brainstem caused both issues. I have become very protective of my remaining hearing. Previously I loved live gigs and concerts, loud music on my headphones, but now even a trip to the cinema has me bringing a soft earplug (you only need one when you’re unilaterally deaf!) to protect my good ear. It must be admitted that there are some small benefits. One deaf ear is very handy for cutting out chatter in the open plan, being able to make a call in a noisy setting, or rolling over onto your good side to get a peaceful sleep. I can also understand people in noisy places better than most, as I rely on lip-reading a lot in these kinds of places. One-to-one, I don’t encounter any issues with hearing people; it’s background noise that can make it challenging. With only one ear hearing, you can’t locate the direction of sounds; it all sounds like it’s coming from the left! I’d a funny episode with a very crotchety oul’ wan in Arnotts a few years ago, while waiting for the lingerie changing-rooms. I eventually realised this half-clothed older lady in one of the cubicles was frantically hailing me to ask me to call the shop assistant back. She must have tried a few times to get my attention before I’d responded because she grumpily spat out “are you deaf, or what?”. I smiled and said pleasantly, “I am actually; deaf as a post in my right ear”. The look of mortification on her face was very amusing! All joking aside, deafness is a serious issue to deal with, as is any loss in a functional system. In the past I used to dread the frequent relapses that rolled in every few months; you never knew what you’d lose each time. With the newer MS medications that are now available, I don’t worry about relapses any more. My MS has reached a level of stability I never thought possible. Maybe, in time, and with new discoveries yet to be made, we can even start fixing things that got broken along the way. More Information: Hearing Loss, NMSS Hearing Problems, MS Trust How to Look After Your Hearing, HSE 10 Tips For Looking After Your Hearing
First ever patient survey of outpatient neurology services now calling for responses The Neurological Alliance of Ireland (NAI), the umbrella representing over 30 patient organisations, in partnership with the National Clinical Programme in Neurology, has launched the first ever patient experience survey of outpatient neurology services in Ireland. This survey represents an important opportunity for people with neurological conditions and their families to share their experiences of neurology services in order to identify areas of the service that can be improved over time. Tell Us What You Think To find out more about the survey and how you can complete it please download information leaflet Closing date for completing the survey: Friday, 15th December 2017
Majority prefers hard copy to ebooks with almost half visiting the library according to MS Readathon survey Seventy-six per cent of people prefer to read from a hard copy book versus an ebook or audio, according to a survey marking 30 years of the MS Readathon. Most of Ireland’s readers have their own personal library at home (92%) and read primarily for leisure (95%). 4% read for research. Almost half of those surveyed visit the public library for the most part to check out a book (76%), while 19% attend events at the library and 5% access the internet or use a computer. At 95%, almost all believe it is highly important for children to form the habit of reading in a world of screens. There is still time to sign up for the MS Readathon and Multiple Sclerosis Ireland is encouraging schools and home readers to take part in the sponsored reading initiative. The reading month will take place from October 13th to November 13th 2017. Please visit www.msreadathon.ie to find out more. Felicity Dahl launched the 30th MS Readathon joining MS ambassador, Michelle Hanley, 27, from Cork who is living with MS, and her two children, Abbey and Alex. Felicity’s late husband, Roald Dahl launched the first ever MS Readathon in 1988. She referred to the well-loved author’s words: “Roald once said, 'if you can learn to treat books as your friends when you are young, you will always be able to cope with the tougher [more serious] ones in later life’.” Reading a book is the number one way to spend down-time for more than half of respondents, followed respectively by watching television at 23%, scrolling through apps on a mobile or tablet at 12%, surfing the web at 11% and lastly, checking emails. According to the MS Readathon survey, 42% are happy to read anywhere, 38% read in bed, 14% on the couch and 6% read on public transport. 1 in 10 claimed that they would like to read more (12%). Survey marks 30 years of the sponsored reading initiative for Multiple Sclerosis Ireland proudly supported by Heinz. Thanks to everyone for taking part!
Have you got something to say about what your life is like living with MS in Ireland? Will you share it with the world? This is your opportunity to get more involved with MS Ireland as well as showing us your glorious gifts of expression! In 2018 our award-winning blog is being revamped. We are seeking writers who have a passion for sharing their thoughts, getting to the point and who want to get involved with MS and Me Blog in 2018. Since 2012 the MS and Me Blog has been an online space for people to share their stories of living with MS. The Blog has become a vital information source for the MS community in Ireland and further afield. With updates every week, the Blog has become part of many people’s weekly reading and is a way to connect with other people with MS. The current group of bloggers have shared their tales of triumph, told the world how they’ve dealt with disappointment, how they maximise the good things in life, learned to deal with the symptoms, celebrated the benefits of being part of a community, the fall-out from diagnosis and treatment and the joys that come from lives well lived. We want more people to get involved and write for the MS and Me Blog and are calling for people with MS and others from the MS community in Ireland (including carers, health care professionals, partners of people with MS) to take part in the MS and Me Blog. Does this sound like you? Write to us, tell us who you are, where you’re from, what age you are and your connection with the MS Community. You’ll also need to send us: One 500-word piece about MS A Letter of Motivation as to why you want to take part Send your work to communications@ms-society.ie (with MS and Me Blog in the subject line) by the 9th November 2017. We will be in contact with everyone who submits their pieces on time. If you have any questions, please email us or get in contact on Facebook or Twitter. The MS and Me Blog Editorial Team
Get active for MS and sign up to trek with us in 2018. Challenge yourself to trek to Everest Base Camp or join us in Jordan or Italy. The choice is yours!
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