MS Ireland
Informing, Supporting and Caring for the MS Community
The Freedom of Information Acts give people a right of access to records held by many public bodies including Government Departments, the HSE and Local Authorities. It also allows for the Government to prescribe (or designate) other bodies receiving significant public funds, so that the FOI legislation applies to them also.
MS Ireland already makes available certain information on our functions and activities to the public through our annual reports, financial statements, website, information leaflets and through discussions with staff members. This information will continue to be available without having to make a formal request under the Freedom of Information Acts 2014. For further information on accessing information held by MS Ireland, please click here
For information on MS Ireland, its services, structures, financial information etc, please refer to the Model Publication Scheme, click here.
Briefing Document and Position Paper on the need for an MS registry in Ireland MS Ireland has produced a Briefing Document and Position Paper on the need to establish an MS Patient Registry in Ireland. The paper outlines: What patient registries are Why registries are important Current patient registries in Ireland MS registries internationally MS Ireland’s position and recommendations The paper can be accessed here This document has been prepared by Harriet Doig, Information, Advocacy & Research Officer, MS Ireland. Questions and comments can be directed to harrietd@ms-society.ie
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!
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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