It’s not the first time I sit back at night and go over past moments that captured me, inspired me and willed me forwards to do more, much more.
As societies go, there’s a lot of goodwill in the MS Ireland society, but also hard facts that tell others that this is a group of outstanding people working for people with MS.
Focused on advocacy, support and service provision, information and education as well as research and spreading awareness, you simply cannot find a better informed charity like MS Ireland.
If anything good can/has to come from having MS myself, it’s voluntarily cooperating with the Irish MS Society and being able and allowed to spread awareness on their request, showing people in Ireland a personal view on what is often a very, very invisible illness.
Budget cuts have tempered the road the society was on, ensuring that certain services have been reduced in size and nature. But on they go. Better, stronger, faster and indeed… more.
The MS Society’s mission is “To enable and empower people affected by Multiple Sclerosis to live the life of their choice to their fullest potential.” To add to this, their vision also says this “MS Ireland has a vision of Irish society where all people affected MS live positive and active lives in the community.”
And that is exactly what MS Ireland does. People with soft, quiet strength, shine and you want to learn and cherish them in what are hard times for yourself and/or your family. For example, after being diagnosed in April 2005, I was able to go to the MS Care Centre in Rathgar, Dublin for a week. The centre is one of two national services the society provides, and is in fact the only therapy and respite centre for MS in Ireland. The aim is giving people with MS a week-long chance to relax and enjoy different sorts of therapies on a short-term basis.
While I was there, I not only met 7 absolutely fantastic people with MS, but I learned what living with MS would be or might be like. I will never forget how optimistic every patient was, and how caring the nurses and doctors were. Vincent, an elderly gentleman of about 80 whom I shared the dinner table with, stole my heart because he always had a smile on his face. More than once he had me in stitches at the breakfast or dinner table, and I still fondly remember those moments.
It was a fantastic chance to meet other people with MS, and I learned and enjoyed the different types of therapy available, like massages, occupational and physiotherapy, reiki and other treatments. During the chat with the occupational therapist, we went over the aides that might come in helpful at home.
I cannot remember anymore how long after I returned home from the Care Centre, a lorry delivered several aides. My chin was probably on the floor when the driver brought everything in the house, because I could not remember ordering any of it. To this day I don’t know if it was given by the Care Centre, the MS Society or the hospital, either way, the items definitely came and still come in handy!
Sadly it was my only stay in the Care Centre, but knowing there is a place where people with MS can live together for a week, share stories and get extra treatment, makes me want to sign up again. I received an offer a while ago, but I forgot to reply to it.
In the meantime, the Centre has “reaffirmed its commitment to providing quality professional care by achieving the coveted CHKS accreditation. The award comes after an intense 18-month development programme with the UK-based and internationally recognised CHKS, a leader in health-care knowledge systems and accreditations. It follows on from the Centre’s 2008 success in receiving an EIQA national quality and excellence award. The CHKS accreditation means the Centre is aligned with international best practice in health-care facilities.”
Aside from the Care Centre, World MS Day in May, the society’s National Meeting Day and National Awards in September, MS Ireland is also involved in creating social, cultural and information meetings all over Ireland. This ensures that Ireland is blessed with a team of about 120 employees who manage many regional services as well as the national ones, and there are many more volunteers and other benevolences that make sure that no one with MS should feel cut off from society.
MS Ireland brings out the best in people, and they have done so in my case also by voluntarily etting me represent them and/or advocate for and on their behalf.
In 2012, I was asked to talk to the press in regards to the Irish health department (HSE) prohibiting people with MS have access to new oral treatment (*)(**)(***). I was honoured and more than happy to do so, after all, I love a good chat every now and then (oh yes, I do!). It led to more interviews, so I was delighted to help add pressure to erroneous and discriminating government decisions.
Last year I was invited to be interviewed for newspapers again as well as during a panel discussion at the National Meeting Day. The society also sent me to a conference on the UNCRPD ratification delay, something which Ireland is shockingly slow to do, and I lapped it all up like it was the best ice cream ever (****)(*****).
Just last Wednesday, I was again invited to a meeting of the group of bloggers who write on the society’s web site. I met two people who, in my belief, do the best of jobs in an environment which continues to be curtailed by government spending. Meeting two non-MSers with such enthusiasm, a good heart and interest in MS, shows that people without MS can do as good a job as someone with MS.
Personally, I hope I can be voluntarily involved with the society for years to come because they showed me that MS is not the end of the road, or indeed the end of a happy life. Seeing the type of help that is out there was a true eye-opener when I was just diagnosed. It made me realise that life in Ireland is possible, even when you have a foreign passport and an illness that makes you cringe more than once a day.
MS Ireland mapped out positivity and guidance, real social commitment and reasons not to despair when you have MS. I happily give them my time, they give me a choice, an ideal and huge support for those who for some reason or another, cannot ask for help.
(*) Gilenya in Ireland… or not?
(**) Gilenya in Ireland, part 2
(***) Gilenya in Ireland: Yes!
(****) UN Convention on the Rights for People with Disabilities
(*****) Time to give disabled people their voices back
If you want to financially support MS Ireland, please go here.
If you’re interested in getting involved, please go here.
For more about the MS Care Centre, please visit this site.
For more on the MS Ireland blogs, please go here.
MS Infoline: 1850 233 233
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