MS Ireland
Informing, Supporting and Caring for the MS Community
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
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
Hearing loss, or impaired hearing, is an uncommon symptom of MS, Helen Farrell discusses the affect it has on her daily life. There was a documentary on Lauren Bacall, actor, on television that morning, the movie star of Hollywood’s golden age. I had a virus, or so I thought, and I was taking antibiotics and feeling off-balance. It was nice to have the flat to myself and watch some tv biographies while my flatmates were at work. Suddenly, I realised I must be sitting on the remote control, as Bacall’s smooth voice trailed off into quietness. But how peculiar! The remote was beside me, and I wasn’t sitting on the volume button after all. Darts of fear shot through my stomach as I realised that the television was fine, it was the hearing in my right ear that wasn’t. In those 10 seconds, it disappeared totally, never to return. Two hours later I found I was unable to walk in a straight line or make it down the stairs, and I really started to panic in earnest. I thought I might have had a stroke. A hospital admission, an MRI and two lumbar punctures later, and I was told I had MS; that was 19 years ago. 1 in 1,000 of us in Ireland will be diagnosed with MS, but it is “exceedingly rare” to have permanent deafness from MS. Yep, I feel so goddamn special. Deafness often goes together with tinnitus, a roaring, grating, rushing noise constantly roaring in my deaf ear, but I don’t notice it any more. It’s amazing what we can adapt to and accept as normal. Another MS-friend has tinnitus too, but no deafness, so having tinnitus doesn’t necessarily mean you’re going to lose your hearing. A friend-of-a-friend with MS lost her hearing in one ear for six months, and then one day her full hearing returned. In fact, it’s far more likely that even if you lose your hearing that it will return, when you’ve MS. My case is not a common one. I believed for a long time that that my hearing would return too, but I eventually accepted that it was gone for good, or until they find “the cure”. To use a hearing-aid you must have some residual hearing. I have nothing, unless it’s over 80 decibels (like a loud motorbike) so a hearing aid would be useless to me. The neurologist and audiologist tried to locate the lesion that was causing the deafness, but they couldn’t pinpoint it. Because the sudden deafness happened during a severe MS-relapse, it’s nearly certain that MS caused it. I had severe balance problems during that relapse too, so it’s likely that a lesion in the brainstem caused both issues. I have become very protective of my remaining hearing. Previously I loved live gigs and concerts, loud music on my headphones, but now even a trip to the cinema has me bringing a soft earplug (you only need one when you’re unilaterally deaf!) to protect my good ear. It must be admitted that there are some small benefits. One deaf ear is very handy for cutting out chatter in the open plan, being able to make a call in a noisy setting, or rolling over onto your good side to get a peaceful sleep. I can also understand people in noisy places better than most, as I rely on lip-reading a lot in these kinds of places. One-to-one, I don’t encounter any issues with hearing people; it’s background noise that can make it challenging. With only one ear hearing, you can’t locate the direction of sounds; it all sounds like it’s coming from the left! I’d a funny episode with a very crotchety oul’ wan in Arnotts a few years ago, while waiting for the lingerie changing-rooms. I eventually realised this half-clothed older lady in one of the cubicles was frantically hailing me to ask me to call the shop assistant back. She must have tried a few times to get my attention before I’d responded because she grumpily spat out “are you deaf, or what?”. I smiled and said pleasantly, “I am actually; deaf as a post in my right ear”. The look of mortification on her face was very amusing! All joking aside, deafness is a serious issue to deal with, as is any loss in a functional system. In the past I used to dread the frequent relapses that rolled in every few months; you never knew what you’d lose each time. With the newer MS medications that are now available, I don’t worry about relapses any more. My MS has reached a level of stability I never thought possible. Maybe, in time, and with new discoveries yet to be made, we can even start fixing things that got broken along the way. More Information: Hearing Loss, NMSS Hearing Problems, MS Trust How to Look After Your Hearing, HSE 10 Tips For Looking After Your Hearing
Have you got something to say about what your life is like living with MS in Ireland? Will you share it with the world? This is your opportunity to get more involved with MS Ireland as well as showing us your glorious gifts of expression! In 2018 our award-winning blog is being revamped. We are seeking writers who have a passion for sharing their thoughts, getting to the point and who want to get involved with MS and Me Blog in 2018. Since 2012 the MS and Me Blog has been an online space for people to share their stories of living with MS. The Blog has become a vital information source for the MS community in Ireland and further afield. With updates every week, the Blog has become part of many people’s weekly reading and is a way to connect with other people with MS. The current group of bloggers have shared their tales of triumph, told the world how they’ve dealt with disappointment, how they maximise the good things in life, learned to deal with the symptoms, celebrated the benefits of being part of a community, the fall-out from diagnosis and treatment and the joys that come from lives well lived. We want more people to get involved and write for the MS and Me Blog and are calling for people with MS and others from the MS community in Ireland (including carers, health care professionals, partners of people with MS) to take part in the MS and Me Blog. Does this sound like you? Write to us, tell us who you are, where you’re from, what age you are and your connection with the MS Community. You’ll also need to send us: One 500-word piece about MS A Letter of Motivation as to why you want to take part Send your work to communications@ms-society.ie (with MS and Me Blog in the subject line) by the 9th November 2017. We will be in contact with everyone who submits their pieces on time. If you have any questions, please email us or get in contact on Facebook or Twitter. The MS and Me Blog Editorial Team
This week Willeke Van Eeckhoutte talks about Trigeminal Neuralgia and the implications it has for her daily life. Bear with me, please. I need to get something off my chest. Or rather, my face. I bet we can all remember the first time we went to the dentist. I know, not the nicest of memories. The needle. The pain. The sound of the drill. The rubbery feeling in your chin or cheek afterwards. Now, multiply the latter sensation times, let’s say, by 100. Welcome to the other side of trigeminal neuralgia (TN). The side where stabbing, shooting pain is not present, yet the numb, dull, throbbing sensation are. It is also burning like fire. TN sounds like a mouthful. It turns out; it is a mouthful. You can’t talk without sounding like you’re drunk on two bottles of whiskey. You also can’t talk during severe attacks, often making you yelp between words. Added to this, forget about not spilling at least half your cup of coffee, or worse, your other favourite drink: milk. As it turns out, the rubber sensation is perhaps not as painful as the stabbing version of trigeminal neuralgia, but it is enough to keep you awake just as much. Oh, the joys of facial pain. Thank you, multiple sclerosis. I wish you would just bugger off and let me have my sleep. The last time I slept like a baby was 13 years ago. I cannot even remember what 8 hours of sleep feels like. Worse, I cannot remember what being healthy feels like. MS has been an odd, long journey. Contrary to what my neurologist and I now know to be fact, I started with excruciating left side facial pain combined with extreme fatigue. For the first three years post-diagnosis, registrars attributed the round-the-eye facial pain to optic neuritis and migraine. Despite my continued remarks that it felt different to those symptoms, they seemed happy enough with the ON tag. It took some time and a master-neurologist to bluntly shoot down the ON theory and put TN on the map. I felt vindicated. I felt that finally, I was on the road to recovery from pain so awful, you cannot stand the slightest of changes to your environment and as such, seemed to turn into a rather antisocial human being. I was even happier when facial pain disappeared altogether, just like that. No tagline saying, “Hey, I know you hate me, so I will vanish just to please you!” Without any warning, TN resurfaced years later. And is still here today. On any given day, pain, touch, temperatures or vibration can trigger a TN attack. Talking, smiling, brushing my teeth or a whiff of cold air can trigger an attack. Vibrations caused by walking or music as well as sudden loud sounds like banging doors, coughing or sneezing… same. Quite often, waking up with the left side of my face resting on the pillow is the culprit. There are so many triggers that listing them all would scare people. In short, I have my hands full with my face. Twelve years with MS and TN have taught me that in fact, I can give TN the middle finger approximately 50% of the time. Out of necessity, I’ve learned what the triggers are and have had to adapt thought patterns. I won’t lie. On days where facial pain takes over, I curse it for all eternity. TN is a drag. A cause of a less active social life. Lower quality of life. Loss of friends, even family members who don’t accept and refuse to see how bad facial pain symptoms can be. Just last week, I wanted to run from the shop during my grocery trip because children were screaming. I love children, but I prefer them when they come with some form of a sound suppressor. Or, with parents who ask their children to behave in a shop. Also, smiling is troublesome. Pictures of me with a big smile are rare these days, and while I look angry, I am not. I am simply in pain, heavily medicated and so afraid of another round of shooting or burning pain. I still have mischief in mind; it is just not translated to my facial nerves anymore. But, I refuse to consider nerve pain a deal breaker. I soldier on. There’s no other way but to soldier on as best as I can. On days when MS and TN are just too much to handle, however, I fear its pain and pray I won’t let people down. I am aware that I cancel plans more than others would, but I’m blessed with a supportive MS society, friends and remaining family members who do understand the pitfalls of excruciating stabbing pain like trigeminal neuralgia. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter
The Multiple Sclerosis Society would like to say 'Thank You' to Trevis Gleason for all his help and TEVA for supporting MS & Me: A Community Blog for People Living with MS.
Welcome to our MS community blog - a place to share and learn from others with MS. Read through our blogs and share your thoughts and experiences. Enjoy!
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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