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

  • Photo for article: Sugar and Health

    Sugar and Health

    This week our guest blogger Gillian Carroll Bouse shares her thoughts on a sugar-free Christmas and her efforts to purge the sweet-but deadly- stuff from her diet.  “On the first day of Christmas my true love sent to me, a partridge in a pear tree. La de la la…” and so it goes. I am afraid I am going to find it very difficult and vaguely uncomfortable this holiday season. You see, apart from leaving my home of many years and other major life changes, I have adopted the Sonoma diet (aka a Mediterranean way of eating) and gone on an all-out sugar detox. I do love sugar, but if I want my MS to love me, it’s got to go. Not surprisingly, the first part of the diet involved the TOTAL elimination of sugar. As a western society, we eat roughly four to six times the amount recommended by doctors. As well as a number of other health related issues, sugar in the blood stimulates immune cells to release inflammatory molecules that travel throughout the body, causing damage and irritation. Other negative symptoms of sugar ingestion and withdrawal I experienced included headaches, tremors, low energy, muscle aches and pain, chills and sweats, insomnia, strange dreams, irritability, gas and bloating, just to name a few. Looking back, it is easy to see why I may have been experiencing many of these symptoms and interestingly, many of the symptoms are also common in people with MS as well. Sugar is very addictive, but now I know exactly how addictive. Before I got married I ate very little sugar but as soon as the honeymoon was over, my intake increased. I treated it as if I was given carte blanche to pig-out on as many sweet things as possible and two stone later, I resembled a typical overweight and unhealthy person. After finally giving up the sugar I realised I had been out there with all the nutters: crazy, irritable and unable to concentrate. On the heels of my success with sugar detox, I soldiered on with the Sonoma diet and went on to replacing sugars with fruits, vegetables, lean meats and whole grains, while leaving out the dairy, fats, and other unmentionables. Now that the hard work is done (or at least it's getting easier), it’s as if a veil has been lifted. Many of my MS symptoms have improved and some have disappeared completely since quitting sugar. My energy levels have increased, I have become a nicer person (if that’s even possible), I have lost almost all the excess weight gained over the years, and my skin has even improved. Along the way, I've also improved my cooking skills and saved money. Although my willpower is apparently a work in progress, it keeps improving even with a small nibble of a sweet now and then.  I'm not sure I was prepared for quitting sugar to be on a level with quitting smoking but it’s been worth it, and has been one of the best things I have ever done for me and for my MS. Love it or loathe it? How do you deal with sugar? Post your comments below or join the conversation on Facebook or Twitter.

    Author: Gillian Carroll Bouse - 01 Dec 2016

  • Photo for article: Brain Health

    Brain Health

    This week Professor Sabina Brennan from the Neuro-Enhancement for Independent Lives (NEIL) Research Programme in the Institute of Neuroscience at Trinity College Dublin asks us to consider our brain health.  We all know people who are really resilient; people who seem to manage to ‘keep on keepin’ on’, no matter what life throws at them. Our brain has the capacity for resilience too, provided we give it a helping hand by living a brain healthy lifestyle.  People tend to associate Multiple Sclerosis with physical symptoms, pain and fatigue. But about 60% of people with MS experience difficulties with cognitive functions needed to communicate, plan, remember and make decisions. So how come 40% of people with MS don't experience cognitive symptoms? It seems that these individuals have some sort of resilience that allows them to tolerate more disease in their brain than others while showing no cognitive symptoms. Scientists believe that their resilience, in the face of MS disease pathology, is linked to their behaviours, life experiences and life choices. It seems that the brain has an inbuilt, but finite, resource, which scientists call neurological reserve. This reserve allows the brain to retain function by reorganizing itself to compensate for brain atrophy and loss of nerve cells and nerve fibers. The brain does this by rerouting communication pathways to avoid damaged areas. It can also adapt undamaged areas to take on functions that were once carried out by areas now damaged by disease. This really is pretty fantastic; unfortunately, it just can’t keep pace with disease activity. Eventually Neurological Reserve is exhausted and cognitive deficits become apparent. But that's not the end of the story. Neurological reserve has two components: Brain reserve which refers to the size of the brain  Cognitive reserve, which is the ability to actively compensate and to make more effective and efficient use of brain networks. Our lifetime experiences can increase cognitive reserve and help to maintain brain reserves. This gives us a better chance to hang onto cognitive function if life throws us a curve ball in the shape of disease or injury. All other things being equal, people with Multiple Sclerosis with a high cognitive reserve lose less cognitive function than those with less cognitive reserve for the same amount of brain lesions and atrophy. Give your brain a helping hand by maximising your brain health We all brush our teeth everyday but most of us never spare a thought for our brains. How crazy is that? Of course dental health is super important because we need our teeth to eat, speak and smile but we need our brain for absolutely everything. Brain health really is a precious resource.  It allows us to think, to feel, to plan, to love, to laugh and to remember - all the important stuff – and, yes, some of the not so important stuff too! The human brain is actually the most complex structure in the universe and most of us carry it around in our skull without giving it a second thought. But here’s the thing. Our brain is constantly changing and what shapes it is our behaviours, our experiences, and the lifestyle choices that we make. What we do or don’t do, influences how well it functions and even how resilient it can be when faced with challenges such as ageing, injury or disease.  One of the big things we can do to help our brains is to adopt a brain-healthy lifestyle.  That means looking after our heart health, honest and moderate alcohol intake, not smoking, managing stress and mood, ensuring we get enough sleep and keep physically, mentally and social active.  Adopting a brain healthy lifestyle is like investing in brain capital- not only do these choices help to keep our brain healthy now, but these choices also build cognitive reserves that can be cashed-in at some point in the future. And we may very well need those reserves to cope with, or compensate for, disease, damage or decline.  In fact, scientific research suggests that a brain healthy lifestyle can delay the onset of symptoms in some diseases that affect cognitive functions like memory and attention. Everyone with a brain needs to consider brain health just as everyone with teeth needs to consider dental health.   So next time you brush your lovely pearly whites, use it as a daily reminder to pay some attention to your amazing brain. Check out the brilliant Hello Brain website and keep an eye out for 'Hello Brain for MS' website launching this month. For Twitter users, follow Professor Brennan 

    Author: Professor Sabina Brennan - 24 Nov 2016

  • Photo for article: It’s Our Birthday… And We Thank You

    It’s Our Birthday… And We Thank You

    On the third anniversary of the MS & Me Blog, we’d like to say ‘thank you’ for what you have given back to us. The Irish love to talk. Down here in Kerry, in fact, I sometimes think to myself, ‘why would a Kerryman use one word when three will suffice?’ But when we put the call out to the people in this country who live with multiple sclerosis, asking for people to write about their most intimate experiences with this disease… the community were initially a little shy to get involved! Willeke, Helen, Declan, Joan, Aoife, Niamh, Emma, and Lucina have set about telling their very personal stories, sharing their hopes and fears, and giving of themselves via this blog (and in several other ways) for three years this month. Three years in which they have given of themselves to the point that they were jointly awarded the “Volunteer of the Year” award for MS Ireland for 2016. There is no doubt that this group of dedicated bloggers has given more than their fair share. But what you might not know is what we get back in return from ye. I asked the team what they get back from writing this blog, as a blogger myself, I wasn’t surprised by their answers but you might be! First, know that most of us were not writers before we started blogging for MS & Me. Many admitted that they would never have even thought of let alone considered writing their most inner thoughts for the world to see had MS Ireland not given them the opportunity. We have braided strong bonds with one another in this past three years and we have made connections with people living with MS and their families all across the country. We find members of the MS community coming up to us at public events to thank us for our blogs.  We sound ideas off one another and we hear back from you which directs our topic choices. We await your comments on our writings and you never fail to come back to us with thoughtful insights or well thought-out counterpoints. You see, you are as much a part of the MS & Me blog as those who write it. The hope of all was that just one person might have been reached by our words. By the matrix available to us on the web, we know that hundreds and even thousands of you read our blogs. We have reached out to you and you have reached back through the darkness and we have found each other. Two of us, Willeke and myself, aren’t even from your fair country – we have adopted living in Ireland – but you have welcomed our musings and perhaps even incorporated a little of our ‘foreign’ thinking into your life with MS. I spoke at an event last autumn for the National Multiple Sclerosis Society in the United States. The theme of that meeting was “Stronger Together”. I can assure you that all of us at the MS & Me blog feel stronger together as a team and we have been bolstered even more by your response to our efforts. You see, we have shared a piece of ourselves and you have answered back. As bloggers we drew together our voices into a chorus and you met us with orchestration. When we have stumbled in the dark, you have been there to pick us back up. Together we have made the way easier for one another and we have blazed the trail for those to come behind. You, yes YOU have taken the MS & Me blogs we have offered and turned them into a breathing part of our collective life with multiple sclerosis. For that, we must take advantage of this third anniversary to say “go raibh maith agat”. You have given us more than you’ll ever know. Wishing you and your family the best of health. Cheers Trevis You can also follow Trevis via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 18 Nov 2016

  • Photo for article: A Little Consideration

    A Little Consideration

    This week Declan Groeger considers ‘consideration’ and how even seemingly small actions, or inactions, can have a profound effect on his daily experience.  Inconsiderate, thoughtless and selfish people annoy me. Yes, they really annoy me! I’m not talking about people who forget the occasional birthday or anniversary. The people I’m talking about are everywhere; they live amongst us and carry no external warning signs. Picture this- I’m rolling along in my wheelchair doing a bit of clothes shopping and my path is blocked by some clothes, still on hangers, that the last shopper knocked off the rail and couldn’t be bothered to pick up. Such behaviour is discourteous to other shoppers and particularly to shoppers with mobility issues. It may seem trivial but seemingly small issues often turn into major obstacles. I understand that retail premises must try to achieve the maximum return for their floor space but it annoys me when the floor area is too tightly packed with product to allow comfortable wheelchair/walking aide access. People who park on footpaths are another source of annoyance as the only way past is to use the road and that brings its own difficulties particularly if there is no ‘dish’ or it is blocked. People who don’t clean up after their dog more than annoy me, they infuriate me. Wheelchair users need to be looking ahead for physical obstacles and should not need to be looking for dog foul on the footpath. When dog poo gets onto the wheels of a wheelchair it is difficult to clean off and very often it is not even noticed until it has transferred to the user’s hands. Simply disgusting. I hate being questioned in the 3rd person, people asking “will he...?” “does he...?” addressed to another member of the group. I reacted rather badly recently when a restaurant manager asked my wife Jean “Would he prefer to stay in his chair?” Architects and engineers who comply with the letter of the law but not the spirit of the law really wind me up because their ill-designed “accessible toilet” remains inaccessible or the corridor is too narrow. I hate the legislators who fail to legislate for people with disabilities because there are not enough votes in it for them. I hate gravel surfaces and cobble stones but I accept that at times alternatives are not available so I tend to avoid these areas. I hate places that claim to be accessible but in reality are not. What really annoys me is that I may have been that inconsiderate, thoughtless yob before I was diagnosed with MS. Even then my insensitivity may have continued for years until my own mobility became seriously compromised. I love people who are thoughtful and considerate. I love the person who offers to get that item from the top shelf which I can’t reach. I really appreciate the people who offer a helping hand. I was amazed recently when a five year old boy, standing nearby as I exited the car, asked if I needed help. I am grateful for architects and engineers who design really accessible places and the builders who bring those plans to completion.  What’s your experience? Declan Don't forget to visit able2access.wordpress.com a blog about accessibility for the mobility impaired 

    Author: Declan Groeger - 10 Nov 2016

  • Photo for article: How Do We Find the Lightness of Life on Dark Winter Days?

    How Do We Find the Lightness of Life on Dark Winter Days?

    As we rush headlong into winter, today Emma reminds herself to look for ways to get though the season and maybe even make the darker days, if not brighter at least more manageable. This dry spell we've had has transformed the green trees into a blaze of reds, oranges & unexpected brightened. When the sun is out, the days are long and the nights short, my health always seems much better. The colourful, crunchy leaves & walks in the woods with sunshine have made the change to the darker days easier to cope with. Something about the light causes even the bad days seem not so bad. But what happens when the bad day is on a wet miserable winter day? The clock change has really knocked me off balance & I’m struggling. This week I've been up in the dark, commuting in an eerie half-light to spend a long day in the artificially illuminated office before going home at dusk. It is the same every year only now I'm learning to focus on 'just for now' and not let the outer situation -weather- overly influence my emotions and overtake my reality. My supports comes in many guises but are all nuggets of joy - a reading in the morning before day really starts, a coffee on my way to work and meeting up with friends during the week. I prepare more 'hearty' meals, eat more soup, and make sure I'm keeping my Vitamin D levels topped up! One of my colleagues uses a 'light box' that influences Vitamin D as well as better mood- so I might invest in one myself.  Some MS symptoms come, some go & some stay to disrupt, disable & painfully remind us of our mortality. We have to be thinking about how we get to places, our energy & all sorts of other thing we never imagined dealing with at our age. Who knew incontinence/uncontrollable laughter/wobbles would be a feature of a young woman's life? Despite it all, we stay ourselves. It’s not the large gestures nor the big events that keep people going and that build reliance. Ordinary things like cups of tea in bed, favourite newspaper or magazine, time with family or being organised to avoid stressful situations (online Christmas shopping anyone?).  As the days shorten even more may we have the strength to change what we can, leave alone what we can't and remind ourselves that however things are, good or bad, this too shall pass.  You can read more of Emma's blogs on republicofemma or on Twitter @emmadragon

    Author: Emma Rogan - 04 Nov 2016

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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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