In 1961 Dr. Brian Pringle founded the MS Society in Dublin. Dr. Pringle was at that time a renowned General Practitioner with a great interest in Multiple Sclerosis. He was concerned about the disease but also its effects on those principally affected and indeed the other far-reaching side effects. Dr. Pringle went on to play a leading role in the formation of the International Federation of MS Societies, which today is the standard bearer for MS Societies across the world.
The initial meeting, which was the consequence of a newspaper advertisement, was held in Lumsden Hall, in Dublin in February 1961. This meeting was well attended and momentum quickly gathered resulting in the first Annual General Meeting taking place on 8th June 1961.
The Society moved into offices at 14, Merrion Sq. from where services would be administered for the next twenty years. The task of building the organisation into a vibrant support group was begun. The establishment of branches and the overall advocacy on behalf of persons and families affected by Multiple Sclerosis was to be the main thrust of the new Society. It is interesting to note that even back then there was mention of cutbacks, lack of sufficient services, home helps etc.
At the end of 1982 the Society on celebrating 21 years of service made two momentous decisions. It decided to set up new office structures and to move to establish Community Services by introducing community workers to support the client base of the Society. The premises were purchased in Sandymount Green towards the end of 1982 with the aid of what was a substantial bequest at that time. The editor of MS News of the period wrote “Sandymount Green will give the Society room to grow, it will be a base for expansion of services and the membership will no longer feel excluded or embarrassed by stairs or steps”. Some of the strong personalities who were involved with the Society during the early years, apart from Brian Pringle were, Rory Whelan, Leo Markey, Irene Brindley RIP, Maura Lillis, Tom Breen, Vivien Lloyd Blood and Irving Stewart.
Towards the end of the 80’s MS Care established a Respite Centre dedicated to persons with Multiple Sclerosis in Ireland. A premises was purchased with the aid of a Dept of Health grant in 1989 at 65, Bushy Park Road in Dublin and converted into a centre of excellence providing respite and eventually rehabilitation for persons with Multiple Sclerosis and other neurological disabilities. The progress of the centre continued into the nineties with the able assistance of the ‘Friends of MS Group’ who provided much needed financial assistance. People to the fore during this period were Tom Connors RIP, Mary Allen RIP, Carmel Stenson, James O’Driscoll RIP, Ned Burke and Mervyn Taylor. In April 1982, Brian Pringle passed on to his eternal reward leaving in his wake a legacy of service and dedication in the field of MS, which will be difficult to surpass.
Into the nineties the emphasis was on constitutional change. Brendan Ingoldsby was recruited on secondment from the Dept of Health & Children. The Society hosted a major International Conference of MS Societies, still regarded today as one of the most successful ever organised and support was also given to the emergence of a platform of MS Societies in Europe. The organisation suffered a severe downturn in its structure in 1993 when some fundraising events failed and as a result a number of personnel departed. Procedures were put in place to redress this situation over the following three years and these were by and large successful.
Consideration was given to securing the legal status of the Society and forming closer ties with MS Care. Heads of Agreement were drawn up in 1997. On 19th November 1998 a new limited company was formed with William Lonergan as Chairman of the Board and Michael Dineen as Chief Executive. This company took over all the assets, liabilities and undertakings of the former MS Ireland and the MS Care Foundation (which previously managed the Care Centre). During this period, the Society owes a debt of gratitude to Paul Hogan, Niall O’Carroll, Howard Cusack RIP, Brendan Kenna RIP, Eileen Barry RIP, Martin Nolan, Fr. Jimmy Doherty RIP, Peter Gatenby RIP, William Lonergan and John Paul.
By 1998 the Society had agreed to sell Sandymount Green, a matter, which was finalised in September of 1999 when the National Office moved temporarily to the grounds of the Royal Hospital in Donnybrook. It was at this point decided to source a permanent base for MS Ireland, which would also cater for the growing service need of the membership. It was originally hoped that the Bushy Park site might accommodate all of the need but this was quickly discounted.
The MS Resource Centre was purchased to house the Society’s administrative offices at 80 Northumberland Road, Dublin 4. The Society has almost 100 employees. The MS Care Centre was extended and upgraded. MS Ireland has 10 regional offices.
We are very grateful to all our volunteers who work with the organisation for the benefit of People with MS. There are 38 volunteer branches within MS Ireland.
There is continued demand for our services and we look forward to the day when we shall no longer be needed because a cure will have been found for Multiple Sclerosis.
They say of men and doctors, we don’t go if it’s not bleeding, broken and still gets up. Trevis Gleason went to the doctor… Last weekend, with the changing of the clocks and 60 minutes added to our night, The MS Society of the UK posted a series of blogs under the header “A Sextra Hour”. In our MS & Me Blog of last week, Emma took us into the EMSP bedroom (not to mention her own) and talked about what nice Irish women “aren’t supposed to” talk about. I suppose it’s my turn to turn down the duvet on issues men with multiple sclerosis might face in the bedroom. It’s a serious subject, but let’s remember that sex is fun (and can even be funny), so I may poke a bit of fun as we talk about this topic. Age or MS? It’s not uncommon for people with multiple sclerosis to ask ourselves if something going on with us is, indeed, our MS or if it’s just aging. Men’s sex drive - both mental and physical – can decrease with age. It is important to remember that. Saying that, however, I know of men better than a decade older than me with satisfying sex lives so don’t put it all down to age. The physical function of obtaining and maintaining an erection might be first on the list of considerations for the lads, but sex is more than inserting tab A into slot B, as if you’re assembling Scandinavian furniture. Besides, we all know there are tablets, injections and “appliances” that can help with that arena. The reasons behind such disfunction can be complex; from demyelination of nerves leading from big brain to ‘little brain’ to emotional and physiological issues we heap on ourselves when it comes to performance. It’s important you talk to your doctor, as well as your partner, about concerns in the ‘mechanics’ of sexuality. Feeling all the Feels Loss of sensation in general or specific regions of the body can also have negative effect on our sex lives. Some parts of my body are hyper-sensitive, others have lost some (or all) level of ability to feel touch. But as important as feeling the physical is important in sex, the emotional connection is important as well. Men don’t always get that… do we, ladies? All the parts Every part of our body and its systems can be touched by multiple sclerosis. It’s not just the sex parts that can lead to difficulty between the sheets. If legs make it difficult to walk, flipping and flopping around the bed like we may have when we were younger could be difficult if not impossible. Weak arms can also make sexual positioning a challenge There’s an old joke that God must have been a civil engineer because no one else would put a waste disposal pipeline next to a recreational area. Bladder and bowel issues with MS can have a rather embarrassing result when it comes to sex. Your Massive Sex Organ Here’s the thing, there are work arounds for many MS sexual issues, you just have to use your head. I can’t do much of my everyday living the way I used to do it. Why then would I think that I should expect the sexual part of my life to go on the same way? This is where communication comes into play. We must talk about what’s working and what’s not. We can have frank (and fun!) conversations about how to give and receive sexual pleasure with our partners. A chat with your MS doctor or nurse might seem embarrassing but, trust me, it’s better than giving up such an important and fulfilling part of a relationship. They say that our biggest sex organ is our brain. Use it, men (and women), to its fullest advantage and your life in the bedroom (or wherever it is you might fancy a ride) could be great again… different, perhaps, but still great. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com
Fund for students with disabilities to be extended to part-time students The operation of a €10m fund for college students with disabilities is to be reformed to ensure more people benefit and with fewer delays. The fund for students with disabilities exists to financially assist students with disabilities while they are in education. Students apply to the fund via the Disability Support Service in their college. The fund can be used for: Assistive technology equipment and support Personal and Academic Support Transport To date, this fund has only been available to full-time students, however one of the reforms recommended by a recent review was that it be extended to part-time students also. You can read more about financial supports available to students on page 9 of the latest issue of MS News
This week Emma Rogan feels a little bit… awkward. No one who walked into the room left without having some of their ideas changed to a more sex-positive way. It was after lunch, it wasn’t in the dark and they didn’t whisper when they spoke about positions, difficulties climaxing, drugs that help or toys that work about lubrication, orgasmic spinal centres not getting enough stimulation and vacuum device to help with erectile dysfunction in loud voices and in public! They were talking about sex and people with MS. “For most people, sexuality and its expression are a natural and important component of self-concept, emotional wellbeing and overall quality of life” World Association of Sexology Sex is a core part of being a human yet in this society it’s a topic so weighed down by disgust and shame that having a sex-positive discussion is almost impossible. Add to this living with a nerve-signal, body-altering condition and we’re all silent. I have scars in/on my brain and spine and damage to my nerves causing loss of feeling. I’ve not always been able to feel the touch of a lover and I’ve faked so many orgasms I can’t count. I’ve had great sex, fall-asleep sex and everything in-between. Sex only got better when I was honest about whom and what turned me on. There are thousands of women with MS and their sex-partners having unfulfilling sex lives for all sorts of reasons. Maybe it’s because of the dreaded T word- talking. Maybe being diagnosed with MS has severely impacted how we feel about our body and our personhood has been seriously harmed. Maybe it’s a traumatic experience in the past that has damaged our bodily integrity. Maybe when we’re in front of our neurologist our sex life not on the priority list. If we value your sex life, we must talk about it. Otherwise, we leave the clinic without a referral to a therapist or having a conversation with the MS nurse or a getting prescription for something useful or tips on what would work for us. We’re complicated creatures and if having MS is having an impact on how we feel about ourselves, we need to deal with it. If there are issues with our relationships, we need to talk with our partner and consider seeing a couple counsellor. If it’s something physical (loss of erogenous/clitoral sensation) speak to your neurologist or an urologist. Ask someone and learn to talk about it so when you do talk with your girlfriend or boyfriend, wife or husband or with someone you trust, you start getting sexual healing. MS Ireland has a trained psychosexual therapist on their staff, Mary Leonard (maryl@ms-society.ie) and she’s available if you need her help. Get in contact with an accredited therapist. Imagine living in an Irish society free of repressive attitudes, where people are decent to one another, disagree and still get on and where there’s a celebration of what it means to be a living, breathing human being. Imagine sex being a routine, part of daily life without competition and not about performance. Being with someone who really turns you on, you can talk to and who makes you happy is worth talking about. Sex doesn’t need to be mind-blowingly amazing every time but pleasurable, yes. The people from earlier were Charalampos Konstantinidis and Moira Tzitzika at the EMSP Spring Conference in Athens, 2017. I’m not a Greek goddess no matter how amazing I think I am. I’m an ordinary woman with needs and desires and I know what and who makes me feel good. Learning about and understanding the issues I have is a step towards me learning how to ‘overcome obstacles effectively’ (Moira Tzitzika). Having MS has not diminished my desire to have a healthy, sex-positive life and if talking about it helps, being awkward is something I know I can overcome. I’m on Twitter @emmadragon a lot and am eager to chat about this and other MS topics. Moira Tzitzika MSc, BTEC, EFT, ΕCPS, MSMC Charalampos Konstantinidis, MD, FEBU, FECSM MS Trust Sexuality and MS: A Guide for Women
Over the coming months the MS Ireland Western Regional Office are hoping to run a 'Mindfulness Course' for people with MS. However, we would like to gauge the level of interest in such a course before we book a qualified facilitator. If you are interested please click on the email below and let the team know what day/time/location that would suit you best and send it back to us here in the Western Regional Office western@ms-society.ie at your convenience.
Thursday, 26th October @ 6pm (Irish Time) Dr. Nonnie McNicholas, St Vincent’s University Hospital, will provide an update for people with MS and their healthcare professionals on the hot topics from ECTRIMS covering the main updates and research themes from the conference. Tune in on Thursday, 26th October at 6pm Irish Time. Click the link below and use the following password ThinkMS to login. http://esc.eventresult.com/default.asp?EventCode=Novartis&RoomCode=Novartis
Have you got something to say about what your life is like living with MS in Ireland? Will you share it with the world? Find out how to get involved with our community blog MS & Me...
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