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

  • Photo for article: Multiple Sclerosis Around the World

    Multiple Sclerosis Around the World

    In our lifetime the world has indeed become a smaller place. Odd then, that our joint experience with this disease is so varied…  Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. We know that. It is estimated that approximately 2 million people in the world have multiple sclerosis and about 9,000 of them live here in Ireland.  We know that too! While the exact course and combination of symptoms that any one person living with MS will vary, we can all say that we live within the same ‘boundaries’ of this disease. That is to say, we may all be travelling in different lanes, at different speeds and in different vehicles but we’re all on the same M50 of multiple sclerosis, no matter where in the world we are making that journey. We’ve all figured that out as well. What is different, however, are the circumstances, conditions and lifestyles that people from around the world travel on the MS highway. The global nature (and inequality) of living with MS has come into better focus for me. In the nearly four years since I moved to our remote corner of Kerry from Seattle, USA, I have had the opportunity to meet people living with MS from over 28 countries and from five different continents. We are all the same, but our commonalities often end at national boarders and regional thresholds. There is a massive effort underway to gauge these inequalities and improve the standard of care and services for those in direst need, while advancing research for better treatments and a cure. I am just back from presenting to a conference of online health advocates and bloggers called HealtheVoices in Chicago and will be off next month to Prague to speak at an International MS Patients’ Summit. I have seen first-hand the international similarities and differences, groups like The European MS Platform (EMSP), the Multiple Sclerosis International Federation (MSIF), the International Organization of MS Nurses, the Consortium of MS Centers and other groups are actively seeking ways to make all of the roads of the MS journey passable. In the last few years Ireland and MS Ireland have played an important role in raising both the bar and the floor in this regard. At the beginning of this month, for example, the International Progressive MS Alliance met in Dublin to assess progress and chart the organisations next important moves and my first experience with the International MS Patients’ Summit was in the Big Smoke as well! Much is happening around the world, much of what is happening in that world is passing through Ireland and the people of this country living with MS can be proud to know that we are not only being heard but that our voice is being sought as well. When I look at films like 'When I Walk' or 'MS Under Pressure' or read comments on my MS Facebook page, I see that the experience people have with living with MS varies as much as the symptoms of the disease itself. I am grateful that I have had the opportunities to live my life with MS on my own terms… as much as the stupid disease will allow. Because of that, I feel it is important that we work towards that day  - until the day we can all exit our MS journey – so that the road we all travel is equally smooth, our vehicles have parity and that no one lane outpaces the others in fairness, kindness and compassion. Wishing you and your family the best of health. Cheers Trevis Trevis' book, Chef Interrupted, will be published in the Ireland next Spring. Follow him on the Life With MS Facebook page, on Twitter, and check out his website.

    Author: Trevis Gleason - 22 Apr 2016

  • Photo for article: Bucket List

    Bucket List

    Bucket lists… things-to-do-before-I-retire… Many of us all have some sort of ‘list’ in our minds of things we want to achieve in life. This week Willeke lets us in on her list, how she uses it and the importance of having goals in her life.  The older I get, the more nervous I become of not being able to achieve all the things I set out to do. After all, every year rushes by, seemingly at a faster speed than the year before! Science is still to crack the code of becoming younger instead of older. And therein lies the problem if you’re a non-bucket-list achiever- at some point in life you will begin to think “Argh, if only I’d…!” done something. But the clock can’t ever be turned back. Being of the opposite kind, I yelped an “Argh!” when I realised I lost all my documents during a laptop crash last year, and I had to rebuild, rethink - or even worse - try to remember what was on my bucket list to begin with (Memory issues… ouch!). Having a bucket list is all about personal fulfilment, and it doesn’t really matter how short or long your list is, as long as it has/had substance over form. My list was/is filled with generic things I imagine many people would love to do- like swimming with dolphins or winning the lottery. Other personal dreams would to be in touching distance of wolves or have much-needed weight loss surgery.  Goals that have already been fulfilled are living in Ireland • Watch sunrise/sunsets on the west coast • Newgrange • WB Yeats’s grave • Rome • Venice • The rest of Italy (•½). Study psychology (• ½). Writing a book (• ½) and many other things. The list is therefore very much a work in progress, which can expand or shrink at any given time. Thankfully, I’m someone who likes to grab the bull by the horns. Where and when possible I chase my dreams as best as I can. Like moving to Ireland. This was a wish and a teenage dream. In it, I have the sea in front of the house and mountains in the backyard. I would also marry someone Irish, who has red cheeks from always being outside and we would live happily ever after. Sadly, marrying someone with red cheeks never happened, and where I live has neither beach nor mountain. Nevertheless Ireland has been a happy home for the last 13.5 years. MS may have tempered the speed of fulfilling the list somewhat, but there is still some life left in it. I am quite mindful though that it doesn’t turn into a check list that urgently needs to be ticked-off and wiped clean every day. The way I treat my bucket list is to forget about it. Continuously aiming for the goals can take away the beauty that is already around us, and in the people we share our life with. We cannot forget to live in-between the goals we have chosen to put down on paper/computer. You also cannot forget to “live in the now” (as mindfulness therapists call it) and make time for those around us. The present is now, it is all we have, it IS as important as what lies ahead. Spontaneity happens when you allow and figuratively step out of the way.   In hindsight, a week in Rome with my mum earlier this year tops everything else I have done or achieved so far. We owe it to ourselves to keep having dreams and to continue putting things on our lists. Life would be rather dull otherwise. Like Henry David Thoreau said, “Do not lose hold of your dreams or aspirations. For if you do, you may still exist but you have ceased to live.” It can reignite your dreams to put them down on paper and remember what lights your spark. Check out https://bucketlist.org/ for some inspiration.  If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 14 Apr 2016

  • Photo for article: Well-being

    Well-being

    This week Niamh looks at the adjustments she has made to improve her general well-being. Your health is your wealth, that’s what they tell us. I am never sure who 'they' are exactly but they seem to know what they’re talking about. People with MS know the importance of their health, they are experts in their symptoms, medications and treatments.  But what about our more general well-being? The well-being which can get lost in the cycle of injections, appointments and being too tired or sore to do anything else?  Over the last few years the notion of clean eating, healthy living and mindfulness has gone from something I was vaguely aware of to a full-on in-your-face all over the internet sensation. OK, it has probably been going on for a lot longer than that, but I was the girl who spent her time online looking at shoes, not lentils and quinoa. It has taken me a while to catch up! I had a few experiences of people telling me stories about how they know someone who had their MS 'cured' by changing what they eat. When I was just getting to grips with having MS, hearing the theories about food and drink was the last thing I needed. I have no doubt that the people had my best interests in mind when they told me, but the timing was just wrong for me and it felt a little like I was being blamed for developing MS.   I am now fully aware that having MS is not my fault. I am also more aware of my health and well-being overall. In particular, I started to look at what I was eating. After a recommendation from a friend with MS, I read about the Overcoming Multiple Sclerosis recovery programme, developed by Professor George Jelinek. I am not going to lie- the first time I read about it, and that it involves giving up meat and dairy (among other things),  I logged out of the website and ate a sausage sandwich. With a glass of milk. And I don’t even like milk.   Then I had a big relapse in 2014, which I’ve blogged about before and you can read about here. Thankfully I recovered well in the following months, but I decided that I had to take more responsibility for taking care of myself. I also wrote a blog on why I didn’t think MS diets were for me, but I was beginning to realise that my symptoms and my body were shouting at me to slow down. I had got into a habit of grabbing quick meals and never switching off from the PC, TV or my phone. Resting was done under duress- I can rival a toddler in throwing a strop when I am NOT tired and I DON’T WANT a nap. Just 5 more minutes… About 12 months ago, I slowly started to adjust from my way of 'barely-being' to 'well-being'. After the small changes I mentioned in my blog, I decided to go for it and I changed my diet drastically. I stopped eating meat and cheese, which was hard. The rest of dairy/animal products followed. I cut back on eating anything that I hadn’t made from scratch. I saw a big improvement in my symptoms and my general health. I wasn’t as tired or achy, and I slept better. My hair and skin cleared up, and people started commenting that I was looking healthier. The biggest bonus was I didn’t have any sick days for MS in 2015. Changing my food has been aided greatly by the huge number of plant based recipe books, websites and social media resources that are available. Many hours have been spent Googling “courgetti spaghetti” I also went back on the Overcoming Multiple Sclerosis website, and took an interest in the recommendations for exercise and meditation. Exercising is not something I am fond of but I started going for short walks to build up my strength and stamina. I was lucky enough to attend one of Dr Susan Coote’s talks on the 'Step It Up' exercise programme which was developed in the University of Limerick for people with MS. I learned that I didn’t have to immediately take on an exhausting and punishing regime. Instead, I could take things at my own pace, build up my speed gradually and benefit from being out in the fresh air. Even if I just sat in the garden for 10 minutes, it was better than an extra 10 minutes screen time. Speaking of the dreaded screen time… that has been very hard for me to cut back on. My life revolves around it. If I am not working or blogging, I am chatting to friends online or watching TV. Or doing all 4 at once! I am just not good at resting. Or being quiet. Or sitting still.  So, the meditation and mindfulness part of my plan hasn’t been a success!  I do recognise its importance though and I’ve made it a mini-goal for 2016. I might have to disconnect the electricity and Wi-Fi first though. As a foot note to this blog, I want to add- I have never been told by any of the (many) healthcare professionals I’ve dealt with that my MS was caused by eating or drinking certain foodstuffs. They have provided me with, I believe, sound advice about medications and treatments. They have been very open to my own suggestions of eating a plant based diet, and accommodated this by regularly checking my bloods for things like iron deficiencies.  I also don’t think that everyone must drastically change their lifestyle, it’s a big undertaking and it’s not easy. I slip up a lot. I don’t always practice what I preach. And I certainly don’t know if it will make a blind bit of difference to my MS Progression. But I’ve decided to stick at it for now, and see how it goes. There are no hard and fast rules, if I decide to go back to eating sausage sambos; it won’t be the end of the world. Who knows, by this time next year, I might even be blogging about the joys of meditation! Thanks for reading, I look forward to your comments. Niamh.

    Author: Niamh McCarron - 07 Apr 2016

  • Photo for article: Curiosity and Innovation: The Value of Research

    Curiosity and Innovation: The Value of Research

    This week Emma Rogan takes a look at research, how things have changed in the Multiple Sclerosis Community, what the successes have been and what areas remain relatively unexamined.    Axons, oligodendrocytes, myelin, neurons, DMTs, cognitive reserve, brain atrophy, Quality of Life, newly-diagnosed and neuroplasticity are just a few of the terms that whoosh along my neurological pathways when I consider ‘research’.  The origin of any research is curiosity, a search for answers. In the 1800s, Jean-Martin Charcot, known as the founder of modern neurology, put a name to the condition/disease that he saw people presenting with- sclerosis en plaque. Since then, people have gone onto ask more questions. As is so often the case, one answer inspires even more questions.  What is MS? When does it affect people?  How do people ‘get’ it?  Is it in my DNA? Is it to do with epigenetics? Why do some people progress faster than others?  Where does it begin in the human body?  Is it genetic/environmental/experiential/psychological?  Add to these clinical questions the questions related to daily life- relationships, mobility, sex, children, university, employment, exercise and other elements of modern living. Never a good time to be diagnosed Twenty years ago, people with MS were told there were no answers to any of their questions. If I had been diagnosed in the early 1980s, there weren’t any options, there was little information on how a person with MS could maintain good health and there certainly weren’t any medical treatments available. I know there is NEVER a good time to be diagnosed with MS but I am glad that for people diagnosed more recently, there are more sources of information, there are resources developed by patient organisations and I can connect with communities of people with MS online and in real life. Online, there are many opportunities to read about the experiences of other MSers, something I know many people find very powerful for their own lives. In the past two decades as technology, sociology, neuroscience, immunology, stem-cell investigation and all fields of research have blossomed, the MS Community has benefited from these endeavours directly and otherwise. It is not purely about the medical field; research into the impact of neurological conditions on an individual’s life; the value of the right nutrition on an MS body; the positive effect of regular exercise on the body- all areas have been or are being explored. We, people with MS, are fundamental to the development, the direction, the focus.  Fellow Explorers Here is a short list of projects and studies, from a variety of areas, blogs from neurologists, from people with MS and others. Bart MS Blog- The aim of this Blog is for the Barts and The London Neuroimmunology Group to update on the latest research in MS with an emphasis on the research we are involved in. Follow Gavin Giovannoni on Twitter for up to date developments. BICAMS- Brief International Cognitive Assessment of MS assesses people with MS and their cognitive function.  BRAIN Initiative- This is a Presidential initiative from the Obama Administration focusing on research into understanding the human brain, the connections and everything possible to research. CenterWatch- A comprehensive list of current ongoing clinical trials. This is a USA-focused site but worth a look.  Clinical Neuropsychology Blog- A blog from Dr. Phil S. Moore. Neuropsychology, understanding the impact of MS on a thinking, assessing the effects and how to intervene.  European Brain Council- The mission is to promote brain research across Europe to improve the lives of people with neurological conditions.  The MS Trust Research Updates- Weekly updates from the Trust on interesting and relevant research on all things MS from a variety of sources. Overcoming Multiple Sclerosis- Professor George Jelinek was diagnosed with MS in 1999 and developed the OMS Recovery Program more than 15 years ago. You can follow George Jelinek on Twitter  PubMed- Millions of articles await you on this site. If you want to explore papers and publications, put in your keywords and this site will show you what’s available.  No end to the Adventure These sites and articles are just to whet your appetite. Knowledge is powerful and is an important tool for life. We make better decisions when we’re educated and have information about what it means to have MS. When I was first diagnosed, I didn’t even know what my central nervous system was for, how it worked and how my being was so reliant on it working well.  Reading and investigating isn’t for everyone but I do believe that for us, for the MS Community, the better informed we are about MS, about general health and our state of mind, the greater the opportunities for development and growth.  Follow Emma on Twitter for more information, links and chats about research, living with MS and exploring ways to maximise your life. 

    Author: Emma Rogan - 31 Mar 2016

  • Photo for article: MS and Irish History

    MS and Irish History

    This week Declan Groeger juxtaposes two very different topics, MS and Irish history, to give a unique perspective. It is who walks alongside us that can transform loss to victory.  People with Multiple Sclerosis are in a class all of our own. We live with something inside us, in our cells that goes off track. We don’t know where it came from and we also know that it is never going to leave. It may lie dormant for a long period of time only to reactivate itself on a whim. It may strike once and never come back to strike again or it may travel quickly or slowly and vanquish its host. With that description of MS in your mind’s eye, I’m going to look at well-known episodes of Irish history and compare them to the history written in our bodies.   Cromwell An early comparison would be the time of Oliver Cromwell visiting. Just like an MS relapse, he didn’t announce his coming and did not give a departure date. He hung around, stayed for four years (1649 -1653) inflicting serious and long lasting damage. Specifically, he inflicted significant damage in Drogheda and Wexford. This is not unlike an MS relapse when specific areas of the body fall foul to this insidious disease. There is no memo on whether the changes are going to be permanent or temporary. If Ireland were to undergo an MRI scan today, the lesions from Cromwell’s time would still be visible.  My next comparison relapse involves invaders. The Black and Tans, officially the Royal Irish Constabulary Special Reserve, were members of a temporary force created to assist the Royal Irish Constabulary during the Irish War of Independence (from 1919 to 1922). During its existence, the Blacks and Tans besieged the large town of Tralee and burned other towns and cities across the country (Trim, Tuam, Thurles and Cork to name just a few). They were an undisciplined group, leading to arbitrary reprisals against the civilian population. The mortality rate was nowhere near as high as during Cromwell’s time but the residue is ingrained deeply in the Irish psyche and will forever be recalled to mind (like the lesions on an MRI scan). Ireland’s next ‘relapse’ was totally self-inflicted. I refer of course to the Irish Civil War (June 1922 - May 1923). Atrocities were committed by both sides and yet again the lesions/scars are testimony to an insidious and unpredictable force that turned families against one another. When my MS is stable I am grateful but I am also wary and apprehensive; waiting for the time that I know, with absolute certainty, will come. I do not let fear of this event control my life, I live life to the fullest possible. Maybe the ‘what might be’ will be years away, or maybe not. I live in the moment, happy to be as good as I am.  But how can I collate MS and Ireland? Cast your mind back to the Celtic Tiger years for an answer. The tiger crept in and pranced about swishing its tail; allegedly ‘all’ people in Ireland got to snuggle up real close and make loads of money. Things just got better and BETTER and in MS terminology, the symptoms just faded away into oblivion until the good times just ‘stopped’ (it was predicted by Morgan Kelly from UCD but people in the middle of it never wanted the love-in to stop). In MS terminology, a relapse just started. It was a bad one, the worst ever. The only way forward, if there was a way, was to take stock of the situation, look at what we could do to return to balance and taste the bitter-tasting pill of what might have been (a health care system fit for purpose, children safe from poverty, sufficient social housing).   MS management is tough. As with all of our lives, there are no guarantees. But we are sovereign over our choices. We learn from people in history who have dealt with adversity. There are ways to adjust to a new reality, discovering new ways, different options and doing things differently. When we have a relapse, we are forgiven for thinking that the death knell has sounded. But we are resilient and like those Irish men and Irish women of Easter 1916 who imagined a new reality, we enjoy our good days when they arrive and work to have many more.  This life is a long road, with many twists and turns. We know that the same fate awaits us as the people of 1916. But for me, now, my joy is travelling my road together with my comrades in arms.  

    Author: Declan Groeger - 16 Mar 2016

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