Displaying articles 1 - 6 of 68 in total
In this week's MS and Me blog Joan looks at big hetic life events like Christmas when you have MS. She said 'This is not meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too' Without a doubt, the bes...
Published by Joan Jordan on Thursday December 18 2014 11:05 AM
'I go to bed tired, I wake tired, I slog through the day tired…' Trevis Gleason explores the difference between sleep and rest'. The View From Here: Opinions on a Life with MS There are many things in the coming weeks that will wear down even the heartiest of minds and bodies. Shopping, ...
Published by Trevis Gleason on Thursday December 11 2014 09:40 AM
There’s something about bodily functions dysfunctioning that strikes fear into all of us. Bladder and bowel control are one of the earliest things we learn as a toddler. They’re possibly one of the last things to go if we get very, very old or ill. In the middle of all that are people...
Published by Helen Farrell on Thursday December 04 2014 11:10 AM
Writing blog posts for the 'MS and Me' website usually cost me nothing but my time and perhaps a bit of chipped nail varnish. This one has cost me hard cash. Let me explain. Given that I am writing about my children's understanding of their mother having Multiple Sclerosis for this blog, I decide...
Published by Lucina Russell on Thursday November 27 2014 11:10 AM
'Yes my MS is but I am not beaten into submission' Multiple Sclerosis is a peculiar illness. It has a myriad of signs and symptoms that affect everyone differently but a discussion of the range of signs and symptoms is for another day. There are three basic forms of MS; Relapsing Remitting MS (R...
Published by Declan Groeger on Thursday November 20 2014 11:00 AM
'MS & Me Blog marks one year by looking back and looking forward' Five hundred twenty five thousand six hundred minutes; that’s how the cast of the musical Rent marked the passing of one year. As the MS & Me Blog celebrates one year since our first post, we thought we’d take ...
Published by Trevis Gleason on Thursday November 13 2014 11:02 AM
EFNA launch European survey on the impact of living with a brain disorder MS Ireland welcomes the launch of the first European survey on living with a brain disorder by The European Federation of Neurological Associations (EFNA). Aim: Find out how neurological disorders impact on the home, work/educational and social life of those affected Explore the association with related conditions/syndromes e.g. mental wellbeing, chronic pain, bladder and bowel disorders, sexual dysfunction etc. Assess the satisfaction rates with treatment and management. The data generated with help EFNA to build a ‘Book of Evidence’ which will be taken to European policy and decision makers outlining why neurological disorders must be a political priority. If you would like to complete this questionnaire at a time and place convenient to you, all you have to do is click on the link below: https://www.surveymonkey.com/s/XJGMHR5 The survey will close on Friday, January 9th.
Closing times over the festive season Our National & Regional offices and MS Information Line will close on Friday, 19th December through to Monday, 5th January 2015 From all the team at MS Ireland wishing you all a wonderful Christmas and peaceful New Year. See you in 2015!
In this week's MS and Me blog Joan looks at big hetic life events like Christmas when you have MS. She said 'This is not meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too' Without a doubt, the best Christmas I have had with MS was the year we unexpectedly got snowed in. Thankfully, we had enough heating oil and food in the freezer to keep us warm and fed but all the trimmings went up the chimney. I didn’t get to queue for hours in the cold to see the Big Man in the Red Suit. I didn’t get to trawl the shops to find a donkey costume (for the school nativity play- not me!). I didn’t get to sing carols and wear a paper hat while wedged into a restaurant for second sittings. The highlight was that I didn’t get a telephone-book-sized credit card bill in January. I DID get to play marathon games of Scrabble with the kids. I got to laze in front of the fire and watch mediocre TV for guilt-free days. I got to build snowmen, snow-dogs, snow-aliens. I got to invent questionable meals from the slim pickings we had left in the fridge. I got to wonder why I was putting myself under so much pressure the years when the roads were clear. Big life events and holidays can be difficult when you have MS. Weddings, funerals, birthdays, Christmas… The times when you need to be “on” for a long time. Or maybe you feel that you are expected to be “on”. No matter how you wrap it up, being ill sucks when you want to have fun like the other kids. I do use the “buy now, pay later” approach sometimes but boy, do you pay! I read Simon Fitzmaurice’s book “It’s Not Yet Dark” during the year about how he lives his life with Motor Neuron disease. He writes about “being a person- not a disease”. He says that “it’s not about how long you live but about how you live”. What wise words! There is a distinct possibility that I might not be as mobile next Christmas, so I want to “tear the arse” out of it while I can. To do everything on offer, in case I can’t next year. To tick a few things off the bucket list. The pressure can be overwhelming and a lot of it comes from within. I think I get a bit mixed up between quantity and quality. Christmas can be a happy time when you are in a happy place. It can also be a very sad time when we mull over the year’s lousy events. I feel sad when I look around and see friends of mine (yes, REAL PEOPLE WITH REAL FEELINGS!) who have declined during the year because of MS. When we plan something but it doesn’t happen because of MS. When somebody I like can’t afford to buy bread and milk because they need to buy drugs for their MS. But this wasn’t meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too. The year we got snowed in, we had a stripped down Christmas. Board games, ghost stories and snowball fights replaced the bright lights of Santa’s Grotto. The Grinch was talking sense when he remarked that “maybe Christmas doesn’t come from a store”….. Here’s wishing you and yours a Merry Christmas: full of triple word scores, selection boxes and “Only Fools and Horses” marathons! Be good to yourself and do what you can. Say “YES” to life for what it is. Have you any tips on how to cope with Christmas and MS?
Track and record your symptoms to optimise your medical consultations The first dedicated iPhone symptom tracker app for people with MS was launched for download. The SymTrac app records general health and wellness information and symptoms over time, and also creates easy-to-read charts which can be stored and shown to healthcare professionals during medical consultations. By recording and keeping all of this key information in one place, people with MS can chart their condition between appointments, and make the most out of their vital consultation time. SymTrac is a free app designed by people with MS, developed in conjunction with Novartis Ireland, which allows people with MS to build a comprehensive picture of how they feel over a long period of time. It stores information about what part of their body is affected, and the severity of each symptom recorded. It is important to keep track of symptoms and overall wellbeing so that any improvement can be noted, or if any progression of symptoms is recorded they can be dealt with more effectively. This information can help to guide people with MS and their healthcare professionals with important decision making regarding their treatment and management of their MS. Symtrac also includes a series of exercises developed in partnership with a specialist neuro-physiotherapist in the MS Trust (UK). It can be downloaded for free from the iTunes App Store and is compatible with iPhone, iPod Touch and iPad and requires iOS 7.0 or later. An android version is also coming soon. Alternatively, a paper version of the symptom tracker can be downloaded from www.symtrac.com
Please read on for a very exciting announcement from Dr Susan Coote, Physiotherapy Lecturer, Deaprtment of Clinical Therapies at the Univeristy of Limerick. "I'm delighted to announce that we have funding for three postgraduate studentships starting in January 2015 with the team at UL. There are two 4 year PhD scholarships, and one 2 year scholarship. All three scholarships are funded by MS Ireland through The Ireland Funds. The scholarships consist of a stipend, fees and a small amount of project expenses, and will be administered on the same basis as the IRC scholarships. The students will be enrolled on the Structured PhD programme in the Education and Health Sciences Faculty. The first PhD studentship is a continuation of the Activity Matters project. This project aims to create web resources for people with MS to become active. It is in collaboration with MS Ireland and the pages will be in the Living with MS section of their website. The project combines behaviour change, knowledge translation and evidence based practise. The student will be involved in reviewing the evidence, listening to the experience of participants, evaluating the website, and embedding the above three theories in the websites. The second PhD studentship is in the area of falls prevention programmes for people with MS. The student will work on projects within the International MS Fall Prevention Research Network, of which Dr Susan Coote is a founding member. In the first instance outcome measures for use in the trial will be explored and the input of people with MS into the programme design will be sought. Subsequently the student will input into the design and evaluation of the programmes. The 2 year studentship (initially MSc with possibility of transfer to PhD after 12 months) will investigate a smart phone app as a predictor of falls for people with MS. The student will be based in St Vincents Hospital on Mondays and Wdnesdays and in UL for the remainder of the time. Data collection includes the TUG, TUG-cognitive and various movement parameters captured by the smart phone." How to apply If you are interested please submit a cover letter (2 pages maximum) outlining why you are interested and what skills and knowledge you bring to the project. Please email your CV and cover letter to firstname.lastname@example.org.
Our National, Regional offices & MS Information Line will close on Friday 19th December until Monday, 5th January 2015. Wishing you all a happy Christmas and peaceful New Year.
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