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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
Ocrelizumab recommended for licencing by European Medicines Agency for relapsing remitting and early primary progressive MS The European Medicines Agency recommends licensing for ocrelizumab (Ocrevus) for treating relapsing and primary progressive MS. The European Medicines Agency (EMA) has recommended that a licence should be granted for ocrelizumab for the treatment of both active relapsing MS and early active primary progressive MS. The recommendation states: "Ocrevus is indicated for the treatment of adult patients with relapsing forms of multiple sclerosis (RMS) with active disease defined by clinical or imaging features. Ocrevus is indicated for the treatment of adult patients with early primary progressive multiple sclerosis (PPMS) in terms of disease duration and level of disability, and with imaging features characteristic of inflammatory activity." The next step in the approval process is for the European Commission to grant the licence, taking into the consideration the EMA's recommendation. Ocrelizumab will then be assessed by the National Centre for Pharmaco-economics (NCPE) in Ireland who will make a recommendation to the HSE about reimbursement. MS Ireland will make a Patient Group Submission to the NCPE as part of this process and we will be doing everything we can to try and make this medication available to Irish people with MS as soon as possible. About ocrelizumab Ocrelizumab is taken as an intravenous infusion (drip). The first dose is given as two separate infusions, two weeks apart. Further doses are given as one infusion every six months. In clinical trials for relapsing MS, ocrelizumab reduced the risk of relapses by 50% compared to beta interferon (Rebif), reduced disability progression and the number of lesions seen on MRI scans. For primary progressive MS, people taking ocrelizumab were 24% less likely to experience increased disability compared to those taking placebo. Across all the clinical trials, infusion-related reactions, chest infections and herpes (oral herpes and shingles) were more frequent in those taking ocrelizumab. Further information is available here
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?
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
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
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