MS & Me: A Community Blog for People Living with MS

  • Photo for article: Accessible Parking Spaces

    Accessible Parking Spaces

    This week from the MS & Me archive, Declan Groeger shares his frustrations about accessible parking spaces used by people NOT living with a disability My 'MS Roller Coaster Ride' officially began in 1988. You know what I mean when I refer to it as a roller coaster ride- there are so many ups and downs and the speed of the ups is never as fast as the speed of the downs. I have grudgingly come to accept, and for the most part live within, my limitations. I have set and reset my targets and my dreams as my abilities have changed. As I have said previously, I’ve accepted the limitations that MS has placed on me but what I cannot accept is the limitations I face as a result of the actions of my fellow citizens. I refer to those thoughtless and reckless people who abuse 'Designated Disabled Parking Spaces'. I wish I could explain the importance of designated parking spaces in a few words but for those who understand no explanation is necessary and for those who don’t understand or care, no explanation is possible. Accessibility is a right, not a privilege. I abhor inaccessibility whilst accepting that it is a fact of life for a variety of reasons (poor design, lack of thought). It should be suffice to say that appropriate parking facilities are a vital element in the social inclusion of people with disabilities.  Who does it? Why do they do it? I have my theories and here is a number of different types of abuser who live among us: The Reckless Abuser – He/she simply doesn’t care what difficulties are caused by his/her actions The Thoughtless Abuser – He/she just doesn’t consider the difficulties caused by his/her actions. These people are members of the “Just a minute brigade!”. The System Abuser – gets a badge fraudulently and is, in my opinion, the worst offender. Family and friends who treat the badge as a perk and use it when the registered person is not present.  What can be done to mitigate the problem?  1. The badges must be checked.Traffic wardens, Gardaí and private parking security must be made aware that we will not be embarrassed if our badges are checked.  2. The cards should be confiscated, if used fraudulently. (Subject to legal constraints). 3. There must be strict adherence to the qualifying criteria before a badge is issued.  4. Appeal to the better nature of people who don’t need a badge anymore, but who find it convenient, not to use them (good luck with that!). 5. Hit people where it hurts- their pocket. In October 2015 the city of San Diego increased the fine for misuse of parking permits to $740. Closer to home in Ennis, Judge Patrick Durcan fined a driver €500 and banned her from driving for 6 months. In reference to the case, Conor Faughnan of AA Roadwatch referred to misuse of disabled parking spaces as “an obnoxious thing to do”. Have you any thoughts on this issue? Further reading Information on Disabled Person's Parking Card please visit Citizens Information DisabledGo facilitate comments and photographs on accessibility in Ireland & UK on Twitter as does MobilityMojo I have my own blog able2access.wordpress.com where I highlight accessibility matters. Originally published February 2016

    Author: Declan Groeger - 23 Nov 2017

  • Photo for article: Changes Afoot at MS & Me

    Changes Afoot at MS & Me

    The faces of the MS & Me blog are changing. Trevis Gleason gives his thoughts on the difficulties that change can bring but also the benefits of adapting to different times. Multiple sclerosis can be overwhelming… and not in the good way.  We at the MS & Me blog are overwhelmed right now… but in the good way. Earlier this autumn we put out a call for writers as we close out our fourth year in existence and look ahead. In those four years, your blog (we see this space not belonging to the writers alone; we are a blog community, so it belongs to us all) has been recognised domestically and abroad as being one of the most affecting and poignant health blogs on the web. As for our current cadre of bloggers, we’ve had our share of personal successes (and challenges) as well. We have become parents and grandparents (as well as aunties or uncles multiple times), we’ve changed jobs, advanced in our careers, or got our first jobs back after having to leave previous employment because of MS. We’ve published books, produced films, been recognized for our personal blogs, and brought our personal works as well as the work of MS Ireland to a European and international audience. For some our MS has stabilised, for others it has advanced. For the past four years we have shared our thoughts, our reactions, our hopes, fears, and dreams with you. It’s been a fair bit of work; trying to fit it all in sometimes. But it’s been important work and we think living with MS might just be a little bit easier because of the space we have created within our blog community. And why do I now say that we’re overwhelmed? Because so many have seen the results and have applied to join this “MS & Me 2.0” as we expand. Four years ago we felt ourselves lucky to find nine people who might be willing to jump aboard as voluntary crew on this ship of discovery. We, frankly, weren’t sure about our course and we were surely ingenuous as to a possible destination. What we have learned is that our vessel is making waves in the form of an international conversation and we need a few more hands on deck to continue our voyage. As we spend the next few weeks reviewing submissions (well over a score this time), know that the process is to be transparent and the pitch level. Our current bloggers who would like to stay on have been asked to submit their intent the same way that newcomers have. It’s not a comfortable process for any of us – growth seldom is – but it’s an exciting time. As the year draws to a close and we put together our new team, we’ll bring back a few posts that you may have missed, some particularly pertinent writings and perhaps a laugh or two. We look forward to introducing you to our team in the New Year and sharing our views of living (and living with MS) through several new and newly polished lenses. It’s a season of celebration and change. We celebrate what MS & Me has been and we celebrate the changes currently underway… but it’s still a bit overwhelming. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning books, Chef Interrupted, and Dingle Dinners are in the shops now. Follow him via Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com  

    Author: Trevis Gleason - 17 Nov 2017

  • Photo for article: Brain Blips

    Brain Blips

    This week Aoife Kirwan discusses 'brain blips' Cognitive blips or brain blips are the second most irritating MS related issue that I deal with. I am 29 years old and rely on lists, diaries, reminders and alarms to make sure I don’t forget to do things. This really bothers me from time to time. My brain doesn’t always agree to keep up with the pace of my lifestyle. I like to be busy, but my brain does not! My cognitive issues seem to go hand in hand with fatigue, so if I manage one, I seem to manage the other. I often wonder whether the fatigue is causing my cognitive issues or whether it’s the other way around?? I do find when I get tired, my brain slows down, I begin doing things absentmindedly, I lose my train of thought and have trouble finding the right word. I also misplace things- my phone, my car keys, my car! I have often parked somewhere and after a few hours shopping forgotten what level/location!! There are times that my brain blips have caused endless laughs. One morning I was quietly getting ready for work, I was running a few minutes late and trying to get ready at a faster pace than my brain could manage. After all the fussing, getting bags packed, lunch made, checking the iron was off and door was locked, I got out to the car and was on my way to work when I realised - I had forgotten to put my skirt on. It's a situation where you could laugh or cry, but I opt to laugh at these things. Something that bugs me, and I can't seem to laugh at is when I go to Google something, then look blankly at the screen as I try to remember what it was that prompted me to open Google in the first place. It was my focus seconds ago and then nothing, it's gone. Similarly I can walk into a room and completely forget why I went in there in the first place. Losing my train of thought or having difficulty finding my words is particularly irritating during an argument or debate. I hate when I have a strong and valid point to make and when an opening to share my pearls of wisdom presents itself - it's gone, no words come out and victory escapes me once again. Later I think of what I was going to say that would have swayed things in my direction, but what good is later! I have learned to know my limitations and accept them. I know that I hit a wall around 3pm for about two hours. I try to work around this, I use this time to do less complicated tasks and go back to more complex jobs once I have come out of that slump. Making sure I am well rested and hydrated is very important too. As I say, lists, diaries, alarms and reminders - while I complain they are indeed helpful tools to make sure I stay on top of things. Whether someone lives with MS or not, we all have blips now and then and that's okay. Do any of you have any useful tips to help with memory or cognition?

    Author: Aoife Kirwan - 09 Nov 2017

  • Photo for article:  'MSMS' Multiple Sclerosis Men & Sex

    'MSMS' Multiple Sclerosis Men & Sex

    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  

    Author: Trevis Gleason - 02 Nov 2017

  • Photo for article: Sex and MS: This Woman’s Perspective

    Sex and MS: This Woman’s Perspective

    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 

    Author: Emma Rogan - 27 Oct 2017

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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.

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