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

  • Photo for article: Economic Impact of MS

    Economic Impact of MS

    Myriad of extra costs with MS... Ten years after diagnosis I admitted to myself that keeping up fulltime work was taking way too much of a toll on my health. Bye-bye pension, nice knowing you full pay-cheque, colleagues, stability, identity and financial security. It was a very difficult time, and I faced a personal crisis that most people only really do later in life on retirement, namely what is my purpose? What defines me? What will I say when someone asks you, “so, what do you do”? A few years later I returned to the workforce in a part-time contractual self-employed role in my former profession as a librarian-researcher and I’m loving it, but I fear for the future. I’ve no private pension, I don’t get paid sick-leave or holidays, and there is no certainty beyond the contract I have signed. I’m only as financially stable as my last invoice. At 42 I hadn’t expected to be still in this position! There are of myriad of extra costs with MS. Secondary Raynaud’s syndrome means the heating needs to be on more, and I’m home more than most. Poor co-ordination, ever-present fatigue and severe heat-intolerance meant I needed an automatic car with air-conditioning, costing slightly more to buy, insure and run. I have to buy cooling products for the summer, high-intensity fans, cool-gel packs to put behind my back for the car and work and this year coming I think I’m going to have to invest in a special cooling vest. I haven’t even got to the point of needing house or car adaptations, that may be in the future for me. I take a very specific set of supplements too. I know these are complementary medicine, but I think they are a very important part of my wellness and they cost €60 a month! I’m only touching on the most obvious of extra costs of living with MS for me. I’m sure that others will have many more. How does the economic impact of MS affect you? I was really glad to see MS Ireland's research survey on Societal Costs of MS in Ireland because it's quantifying exactly what the extra costs of living with Multiple Sclerosis are. Please take some time to add your experience.

    Author: Helen Farrell - 26 Mar 2015

  • Photo for article: A New Altered Life, Post Diagnosis

    A New Altered Life, Post Diagnosis

    Robert Burns, the famous Scottish poet, in 1786, penned the now famous lines “The best laid schemes o' mice an' men gang aft a-gley,” translated from ancient Scottish it loosely means that the best laid plans often go awry. And so it happens in life; we may not have an exact plan laid out for our lives and we may not know exactly where we want to go or how to get there but one thing for sure is that our plans do not include Multiple Sclerosis (MS). I was 31 years old and my life was gliding along at a nice pace; married to a wonderful woman with 2 great children, an overdraft and a mortgage. Then a curve ball landed in my lap. MS took up residence. It snuck in without notice or fanfare. It lodged itself inside my body in 1988 and has refused to leave. In the beginning it took short holidays but kept returning to torment me and now it takes shorter and infrequent holidays.  It is difficult to accurately describe the limitations imposed by MS. I know that I will never run a marathon now but I would probably never have run one anyway. There are plenty of things that I cannot do now that I would never have attempted.  The changes I had to make crept into my life slowly. One of the earlier ones being the need to occasionally use a cane to aid my stability while out and about. Call it vanity or pride but I wouldn’t use a cane in public. For years I carried a golf umbrella and used it as a cane when it was needed for balance but never as an umbrella even when raining! Coffee became a no-no as did ‘heavy’ work. I strove hard to keep a number of businesses going but I had to make decisions and reduce my workload. However, between 1999 and 2003 I achieved 2 law degrees from UCC while continuing my work as an auctioneer. By that time, I was finding myself more and more confined to the office. I was slowly turning into a desk-jockey and the strange thing about it was that I didn’t really mind. Fatigue was becoming a greater feature and other MS symptoms also conspired against me. The need for frequent loo breaks was an embarrassing necessity. Standing to greet people and shaking hands was a problem because of my compromised balance. My friends and colleagues were understanding and made allowances but some customers and clients were less accommodating. Would life have been different without MS?? Definitely!  Speed of movement and MS are irreconcilable; I remember being on holidays in Mojacar, Spain and decided to go for a ‘Banana Boat’ ride. I started to walk across the sand but by the time I decided it was too far I couldn’t go forward or backward and the net result was that the soles of both my feet were blistered and we had to rely on the kindness of another holiday maker to help me back to our hotel. Swimming was another pleasure lost to me. I was never good at gardening but I loved being outside in the fine weather doing garden stuff as opposed to just sitting around and watching others do the work. That became too much for me over the past few years and another pleasure was lost. We moved house recently and the low maintenance garden will get me back outdoors soon.  MS places limits on our lives. This is a fact of life that we must accept but we must not give up without a fight. Know and respect your limits and boundaries but don’t be afraid to push them. If you push too hard your body will let you know. Don’t allow yourself to be sucked down the slippery slope of despondency and inability. Respect MS but don’t give it total control over your life. MS changed my outlook on life... Over the years I have become more tolerant of other peoples perceived shortcomings because of my own. I have become less critical. I realise that not all illnesses are visible and invisible illnesses can be more disabling than visible ones! Most people make allowances for disabilities they can see but invisible illnesses are more difficult to cater for. Do you have a different outlook on life? Declan Further reading A short story of my diagnosis Visit able2access.wordpress.com blogs about accessibility for the mobility impaired   

    Author: Declan Groeger - 19 Mar 2015

  • Photo for article: 'Brain Research in Ireland' Conference

    'Brain Research in Ireland' Conference

    Happy Brain Awareness Week! Take a minute to celebrate how hard your 100 billion neurons work to keep your cranium ticking over. To put it in context, you have more neurons in your brain than there are stars in the Milky Way! To mark this annual event, MS Ireland asked me to attend a conference on Brain Research in Ireland and report back on what I learned.  I won’t rehash what Emma Rogan said the other day in her excellent blog on Neurology in Europe. Suffice to say that in 2015, there considerable challenges facing the Irish Neurological research industry.  The biggies are:  Subject matter complexity Lack of funding Emigration  The existence of silos I was quite surprised to learn that 22% of Brain Research funding comes from charities. As major stakeholders, charities like MS Ireland are enabling the medical world to get closer to that illusive cure. And so we should! Without adequate funding, medical advances will be delayed or overlooked. As a person with MS, I have plenty of skin in the game and want to contribute in any way I can to beating it. One panel member, Dr Graham Love said that people with brain diseases in Ireland should take a leaf out of the IFA’s book and use one voice to ask a common question. “Why is it that the brain receives so little funding in Ireland, in comparison to other illnesses?” Did you know that brain disorders cost the state three times more than cancer? He reckons that the Government’s primary focus will shift from jobs to health over the next few years and we need to stake our claim in a unified and consistent manner. Lobbying your local TD really has been shown to be effective for this. All the movers and shakers in the world of Irish Neurology were present at yesterday’s conference. I was encompassed by brilliant minds. I wanted to ask them so many questions! What would you do if you got MS? When do you think you will find a cure? What can I do to help? How it can be that my friends get prescribed drugs and then they are taken away because they are not deemed cost effective? Why aren’t there more fatigue management drugs available to MSers? While I am trying to be a 'patient' patient and listen to what is being said, I feel like I have been hit by a tsunami of baffling information. The presentation I was most impressed by was on “Patient Involvement in Clinical Research” by Eibhlin Mulroe from IPPOSI. IPPOSI’s vision is one where state of the art innovations in healthcare are available at the earliest stages to patients in Ireland. Eibhlin stated how important it is to talk to the market before choosing a research direction. If scientists were making a shampoo, the first thing they should do is check with the customer if they would actually want to buy it! Irish patients need to be engaged at the decision making process, rather than at the clinical trials phase. If the patients are the ones taking the risk in trials, they should be asked their opinion on the direction brain research is taking. Until yesterday, I had never heard of IPPOSI. I am delighted that they exist and can’t wait to find out more about them. Well, it’s safe to say that I was blinded by science at yesterday’s Brain Research conference. I don’t think that there was many other patients’ there- although entrance was free and the atmosphere was welcoming. One of the speakers quoted Seamus Heaney- “Hope must be maintained”.  I will definitely return next year. Hopefully- we will have a cure by then. 

    Author: Joan Jordan - 12 Mar 2015

  • Photo for article: Neurology and Europe

    Neurology and Europe

    Counting the cost The week that’s in it, Emma Rogan takes a brief look at brain research and the importance of researchers and people with MS working together.  “Knowing how our brain works is the only way for us to understand ourselves, the world we live in, how we perceive external events, how we feel, and how we remember”. Jes Olesen, Gunilla Öberg and Per Vestergaard. As this is Brain Awareness Week - an important week of the year for anyone affected by a neurological condition- this article is a short trip into the research side of it. During the week there will be events about a range of topics around the country. There will be wellness days, lectures, events, media attention and acknowledgment of the importance of the human brain. It is also a time to reflect on what is going on in the realm of neurology, neuroscience and taking a patient perspective on the medical announcements that appear our screens every so often. When will that research-breakthrough, recently announced in Trinity, start to impact people with MS? 1 in 3 people are expected to have a brain disorder in their life-time Multiple sclerosis costs €15 billion per year to Europe. €5 billion of this lost when people leave the workforce. The cost to Europe of brain-related disorders is approximately €800 billion per year. The European Brain Council is a network of researchers, companies, patient organisations, neurologists and students that attempts to promote brain research in Europe.  There is a huge discrepancy between the societal cost of brain and neurological illnesses and the amount of funding provided to brain research. MS ‘costs’ Europe €15 billion every year (€5 billion lost due to people dropping out of the workforce). Add to this Parkinson’s, Alzheimer’s, Huntington’s, Motor Neuron Disease, stroke, mental disorders and a multitude of other diseases cost €800 billion every year.  Patient Centred Research Healthcare technology and information has changed dramatically as we have become better educated and have more information available. Historically, patients were objects of study, used to support development of scientific understanding and treatments. Good for the researchers but what about the patient’s disease? Now patients are active participants, instrumental in disease management and slowly there is a move towards patients being at the very centre of research from development stages right through to the end. When studies are made, people with MS need to be at the table from the very start, not just tacked onto the end for a consultation.  Summary This was supposed to be a piece about the Neurology and Europe, about discovery and innovation but I can’t continue. This was supposed to be a piece about how brain research in Europe was beginning to receive the attention and the funds necessary to study and investigate the mass of connections that is so important to human existence. But it can’t be because yet again people with brain conditions are fighting for scraps. People with brain conditions are being silenced, over and over again. As I write this the Neurological Alliance of Ireland (NAI) an organisation that lobbies, raises awareness and campaigns on behalf of people with neurological conditions in Ireland, is under serious threat. Last year’s interim funding is quickly running out (July is closure date). The organisation has been through two reviews, probably jumped through many hoops all to validate and confirm that the work they do is valuable to the 700,000 people affected by neurological conditions in Ireland.   Brains are important – vital in fact! Many readers know how devastating it can be when diagnosed with a brain condition and have to live with loss. The NAI and the organisations it represents empower people with MS and other conditions to continue focusing on abilities. What is proposed will shut down the voices that highlight the issues for thousands of people in Ireland. For you and for me. Get involved with the NAI and lobby your local TD, get in contact with the Minister for Health and stop the closure of this patient organisation.  Further reading:  Neurological Alliance Ireland   European Brain Council   Trinity Neuroscience   Disorders of the Brain: Costs, recent progress and future possibilities - Jes Olesen, Gunilla Öberg and Per Vestergaard Join Emma on Twitter @emmadragon and blog at republicofemma.wordpress.com 

    Author: Emma Rogan - 10 Mar 2015

  • Photo for article: Emotional Challenges and MS

    Emotional Challenges and MS

    One of my favourite quotes by Lewis Carroll is “I can’t go back to yesterday because I was a different person then.” I couldn’t agree more. Life without a chronic, degenerative illness is often compared to a rollercoaster ride, but it certainly is a wild one when diagnosed with MS. In fact, you can’t go through daily life unscathed when you deal with chronic pain, immense fatigue, lack of sleep, relapses and many other symptoms. Add issues on the home front, professional and personal stress to the unpredictability of living with MS, and you get a deep vault of emotional challenges that will try to test you every day. Personally, since being diagnosed ten years ago, I’ve seen so many feelings pass by that at one time, it earned me the title of being a “walking disaster zone.” In the months following my diagnosis, I felt anger, stress, grief, anxiety and a morning mood that lasted over a month. I can safely say that ten years post-diagnosis, many other feelings popped up, but that today my mood is stable. It wasn’t plain sailing though. Emotional challenges are not always caused by negative, outside events, as MS itself can be the trigger. When there are changes in the brain area that make you feel or react, behavioural changes (and challenges) happen, i.e. laughing or crying at inappropriate times. Side effects of certain medication like steroid treatment, can also be a reason why your behaviour and emotions change.  This is a lot of take in, and it adds extra layers of emotional challenges. Knowing which emotion is which, why they happen and how to get past it, is a hard task. As unsettling and stressful this can be, as important learning to sail past them is. Nobody makes it past the first hurdle unscathed when you’re just diagnosed. If or when you’ve been living with MS for a while, and you find yourself feeling emotionally challenged for the first time, having to face up to your emotions can be a stumbling block. It’s necessary to sit back, take stock and look for help. Attending Newly Diagnosed Days, or Coffee Mornings are very important in this case. You meet and greet others who are sailing in the exact same mental boat as you are. If your emotions take you one step further, don’t hesitate calling your GP or MS Nurse, or the MS Ireland Hotline. Feeling anxious or depressed can be difficult, but remember that you are not alone, so don’t languish in silence. Silly enough, that was what I did last summer. I felt depressed, but didn’t want to admit I did. Since depression often travels with feeling self-conscious, I kept it to myself. Eventually the truth came out, and by expressing my feelings, I felt emotionally better already. What mattered most was that I opened up about this, and that subsequently others were able to support and help. Following Lewis Carroll’s mindset, of course I was a different person the day of my diagnosis, and the many years that followed. Of course I’ve been on an emotional, mental and psychological learning curve that to this day, still makes me trip over my own two feet every now and then. What matters now, though, is that whichever emotion challenges me, I address it head on with the support of my family, friends, MS society and many, many others. Whether it’s anger, depression, grief, denial, anxiety, fear, stress or hurt, check in with others and talk. Also, having a backup plan helps. I have a “Feeling Better Already” box with my favourite film or rugby game, chocolate, warm socks, poems, phone numbers of loved ones and some feathers from my duvet and pillow to help me remind that I need to relax and retire for the day.  Taking time out with the help of the FBA box helps settle my mind, and it feels like a small celebration each time I am on the way of conquering new feelings. Sometimes it also serves as a “Just In Case Box” when I need it most. And remember, it’s OK not to be perfect, and not to be OK.  Please don't forget to also visit my blog Ireland, Multiple Sclerosis and Me  

    Author: Willeke Van Eeckhoutte - 05 Mar 2015

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