News
Moone Boys launch MS READaTHON
Moone Boy superstars David Rawle and Ian O’Reilly officially kicked off the 2014 MS READaTHON in style at Dublin's oldest bookshop, Hodges Figgis, today. We were thrilled to be joined by our long-term supporters, the fabulous authors and illustrators; Sarah Webb, Marisa Mackle, Mariee Louise Fitzpatrick, Oisin McGann and Anna McPartlin. Also joining us were Finn Donnelly and some lovely pupils from The Children's House, Stillorgan and St Fintan's National School, Sutton.
DFI Pre Budget Submission
DFI is urging Government to use this Budget to make the case for an inclusive society that leaves no-one behind. Budget 2015 must break the chain of previous austerity budgets, improving vital services and income supports for people with disabilities, and addressing the growing levels of hardship in which this group unjustly find themselves.
Losing My Religion!
We have all had those conversations with ourselves - 'what would my last thoughts be if I was on a sinking ship?’ As a non-believer, I've wondered if I would I hedge my bets and start to pray to a (wo)man above. The closest I've come to that sinking ship 'moment' was in the days and weeks around my unexpected diagnosis with MS. In those long days, I was overwhelmed with good wishes, cards and gifts from family and friends. I was given religious relics, mass cards and messages saying that I was in people's prayers. I appreciated each and everyone of these gestures, but I confess, it did nothing to draw me back to the teachings of my Roman Catholic upbringing. Rather, it reinforced my lack of faith. Would I say that I am a full blown atheist? Probably. This can be tricky living in Christian Ireland, when education, births, deaths, marriages and everything in between is immersed in religious ceremony. But I am happy enough to go along with these and actively participate at times. Am I a hypocrite? Probably.
Our Responsibility to Research
I was just reading a blog post by Dr Eric Downer on the patient-researcher divide on 'Living Like You' and it brought to mind the need for patients to take part in research. Gandhi once said “the future depends on what we do in the present”. I know that he wasn’t talking about research and Multiple Sclerosis but it holds true just the same. If researchers do not do the research and we do not take part in that research then we are going nowhere fast; As Dr Downer said “We can read forever about the progression of the disease and symptoms in textbooks and journal papers, but we must talk more to people to understand individual experiences and hence become more informed.” Without the participation of patients such enquiries will grind to a halt. I think that if researchers have personal interactions with people affected by MS (or any other illness for that matter) it takes the illness out of the theoretical realms and lands it firmly in the personal realm.
To Tell or Not To Tell?
The choice to disclose an illness, newly diagnosed or not, to your employer is very much a personal one. Whichever you choose, fear of losing your job or being discriminated against can cause sleepless nights just when you need your rest more than ever.
Pow Health launched today
New website provides users with MS a one-stop personal online health centre