MS Ireland
Informing, Supporting and Caring for the MS Community
On the 11th of May we held our ‘Believe and Achieve’ event for young people with MS to mark World MS Day 2013. The day was about learning life-skills, sharing experiences and meeting others with MS. The day was a huge success with over 60 people attending, contributing and sharing.
Emma Rogan, person with MS and organiser of the event with MS Ireland said of the day,
“The Believe and Achieve event was electric! When I heard the brilliant speakers, the noise of great conversation and people meeting, I was thrilled. It is so important to get young people with MS together. When we feel we are alone, we can only focus on survival because we believe no one knows how it is for us.
I was energised to see former strangers talking, laughing and dealing with some of the really tough life topics that come up. It is when we break through our fears we can begin to see our potential. Talking together we gain a new perspectives on our own lives and what we can achieve.
It is meeting with other young people with MS that help I see things in a clearer, more positive way; it reminds me how great life can be when we really focus on what is good and great about ourselves.”
In the morning session we had five wonderful speakers. Links to their presentations (if available) are below.
The afternoon kicked off with a Mindfulness Meditation by Anne Twohig, Centre for Mindfulness Ireland. Well rested, we moved into a motto sharing session. Here we asked all our young people to share their mottos for life and explain why the motto is important to them. This stimulated lots of conversations about diagnosis, symptoms, attitudes, coping strategies, relationships and services and needs. View a selection of the mottos here.
The second interactive session asked people to consider ‘what are the needs of young people with MS?’ A report of this session will be available at the end of June.
The day ended with a fantastic motivational speech by Conor Devine, entrepreneur, property expert and passionate MS awareness campaigner. A young person with MS himself Conor recently published his first book, Attitude is Everything. Conor spoke about his journey from diagnosed and the dark days and ill-health that followed, through to the active and positive life he now leads. View Conor’s presentation here.
Thank you so much to everyone who attend the event and made it so worthwhile. We have been getting terrific feedback and know that it helped many people with aspects of their MS. Thanks to our wonderful speakers who gave up their time and lent us their expertise on the day. Thanks also to Novartis for sponsoring and helping with the event and to the staff of the Davenport Hotel.
Kindly supported by:
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
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
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