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

  • Photo for article: My Passion Piece: How A Little Word Can Make All the Difference

    My Passion Piece: How A Little Word Can Make All the Difference

    This week, Lucina discusses how the words people use to speak about people with MS has an impact on our identity. There’s also mention of dating and road frontage! I’ve always hated labels. As a child, it was the itchy, scratchy ones on the back of new tee-shirts that had to be cut off before wearing them. In later years, it’s the other ‘labels’ that have caused me more discomfort. The labels that stick, that brand you. The ones that are hard to shake off once you have them.   Ones like ‘MS Sufferer’.  Big label.  Huge connotations. I should say that I absolutely and respectfully acknowledge that there are many people with Multiple Sclerosis whose journey with this illness is a lot rockier than mine, who ‘suffer’ more than I. I am conscious of those people particularly when I write this and I understand that they may disagree with me, because their experiences are different than mine and may feel that their rockier road should be recognised as such.   However, I write this taking a broad view, thinking of myself and the many people that I have encountered who have MS since my diagnosis.   When you apply the ‘MS (or other chronic medical condition) sufferer’ label, you are allowing the label to consume the person, with the individual coming a close second. The media are divils for it. Maybe ‘MS sufferer’ makes a better headline than ‘person with MS’, but in my opinion, it’s neither a useful nor always accurate description.   To me, that horrible noun takes away their humanity, their personality and suggests other words like ‘invalid’ ‘victim’ and even ‘martyr’. It’s not how I want my children to speak of me, even if my health deteriorates. The people with MS that I know are citizens, tax payers, parents, lovers, advocates, sisters, brothers, bloggers, daughters, sons, engineers, philosophers, fundraisers, athletes, who also happen to be have a common monkey on their back. And deal with it they do. With courage, dignity, zest, humour and yes, at times, with anger, disillusion, disappointment and fear.     While I am on my soap box, the phrase ‘MS patient’ bothers me too. It conjures up images of a person passively nodding in agreement to the words of the Master.  Most people I know with MS are very well informed, active and educated participants in the decision making around their wellness and health care plan. In my opinion, a person with MS, or any other illness is only a ‘patient’ when they are in a consultation with, or being treated by their GP, neurologist, or other specialist. Once they walk out of that room, they are back to regular old Citizen Me, getting on with life. Perhaps it would be useful to apply these labels to two personality profiles, one looking for a new job and the other, a date ‘Award-winning civil engineer with 20 years’ experience on large scale international project and Multiple Sclerosis Sufferer seeks exciting new challenge’  or  ‘Twenty-something fun loving girl, with ten acres, including road frontage, looking for a man to share her dreams.  MS patient’ To me, the ‘award-winning’ engineer and even the much sought-after ‘road frontage’ pales into the background, with the medical condition to the fore, in bright shiny lights.  On a number of occasions, I have contacted radio stations and newspapers about their use of the phrase ‘MS sufferer’, to ask them to consider their use of language, but I have yet to receive a response from any of them. That won’t stop me from calling them out about the lazy linguistic choices that put me and other people with MS in badly-labelled boxes. Maybe the words they use don’t really matter to them, but they do to me. For now, I’ll put away my soap box, but in an easily accessible place! 

    Author: Lucina Russell - 25 Aug 2016

  • Photo for article: VOTE for MS & Me

    VOTE for MS & Me

    Community blog shortlisted for Littlewoods Ireland Blog Awards Good news! MS and Me, has made it to the short-list in the 2016 Littlewoods Ireland Blog Awards - Best Health and Wellbeing Blog Category. To help us reach the final please click on the image below and vote MS Ireland's MS & Me Community Blog. Voting closes Tuesday, 23rd August 2016 at midnight! THANK YOU to our dedicated bloggers - Aoife, Declan, Emma, Helen, Joan, Lucina, Niamh, Trevis and Willeke for sharing their MS stories and everyday life with us.  Further reading MS & Me community blog Meet the team  Littlewoods Ireland Blog Awards website

    Author: MS Ireland - 19 Aug 2016

  • Photo for article: Our MS Library

    Our MS Library

    Sure, the MS & Me blog is an online resource but our bloggers still have a collection of old-fashioned books on how to live a better life….and just for fun  As I’ve had the great fortune to meet a number of people living with MS all over the world and at different stages in their life with MS, there is one question that I might hear more than any other. No matter where I go, people ask about other available resources to help them live their lives with multiple sclerosis to the fullest. To that end I often highlight other existing resources such as their local MS society and other patient advocacy organisations. I also refer them to blogs that I follow and to tell them to reach out to an MS centre in their region (if they have one). Another thing I like to do is ask them about their 'MS Library'. Some people have one and don’t really consider it as such! Others keep a collection of MS-related books at the ready while some pick up the occasional MS bestseller. Nevertheless others have a small collection of general self-help books that they have found useful. I’ve asked all of the MS & Me blog team to contribute to this week’s post on MS books and general well-being books. Several of the titles and authors overlap but I think you might find this list helpful.  MS Clinical Information: A History of MS - Colin L. Talley The First Year: Multiple Sclerosis: An Essential Guide for the Newly Diagnosed - Margaret Blackstone and M.D. Saud A. Sadiq M.D. Curing MS: How Science Is Solving Mysteries of Multiple Sclerosis - Howard L. Weiner, MD Multiple Sclerosis for Dummies - Rosalind Kalb, Barbara Giesser, Kathleen Costello Multiple Sclerosis: The Essential Guide – Leonie Martin What Nurses Know … Multiple Sclerosis - Carol Saunders, BA, BSN, MSCN Coping with Multiple Sclerosis - Cynthia Benz MS Specific Wellness Books: MS Complementary and Alternative Medicine and Multiple Sclerosis – Dr Allen Bowling Managing MS Naturally - Judy Graham Yoga & MS A Journey into Health & Healing by Eric Small and Lauren M Fishman Dietary Supplements and Multiple Sclerosis: A Health Professional’s Guice – Dr Allen Bowling MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis – Allison Shadday, LCSW Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery - Professor George Jelinek Cooking Well: Multiple Sclerosis: Over 75 Easy and Delicious Recipes for Nutritional Healing - Marie-Annick Courtier and Vincent F. Macaluso MD Mental Sharpening Stones: Manage The Cognitive Challenges of Multiple Sclerosis - Jeffrey N. Gingold The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment - Patricia Kennedy, RN, CNP, MSCN Minding My Mitochondria – Dr Terry Wahls Multiple Sclerosis Memoire and Inspiration: Blindsided - Lifting a Life Above Illness: A Reluctant Memoir – Richard M Cohen Fall Down, Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody -  David L. Lander Chef Interrupted: Discovering Life’s Second Course with Multiple Sclerosis in Ireland – Trevis L Gleason Jokes My Father Never Taught Me: Life, Love, and Loss with Richard Pryor – Rain Pryor Awkward Bitch: My Life with MS - Marlo Donato Parmelee Speedbumps: Flooring It Through Hollywood - Teri Garr Strong at the Broken Places: Voices of Illness, a Chorus of Hope – Richard M Cohen Biographies of Disease: Multiple Sclerosis - Lisa I. Iezzoni Sure, there’s no way we could list all the books out there on MS or general wellness. In fact, my fellow bloggers specifically wanted me to remind everyone that we like and read other kinds of books far more than we read MS books. That said, this list is a good starting place for your own reference shelf, to help your family and friends understand our disease or just for a good old laugh or cry. The National MS Society in the USA has a great page with loads of books about MS if you care to glance at it. Some of the books listed in our MS Library and on that page are published outside of Ireland but you should be able available on your favourite online bookseller. If we missed any of your favourites, we would love if you would share them in the comments section below. We would be thrilled to hear of them and have a read….once we put down the latest vampire romance or juicy summer novel.  Wishing you and your family the best of health. Cheers Trevis You can also follow us via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 11 Aug 2016

  • Photo for article: My MS Nurse

    My MS Nurse

    This week Aoife Kirwan talks about the positive impact MS nurses have on the lives of people with MS. Recently, the hospital she attends lost this service and she tells us how this has affected her life.  It’s the old chestnut- we don’t realise the importance of something until we don’t have it anymore. I didn't fully appreciate having the option to pick up a phone to call an MS nurse and discuss issues was a luxury until recently. The MS specialist nurses at the hospital I attend have left/are on leave and for the last number of months have not been replaced. I could go months without needing to call but now, ironically, I have found myself picking up the phone multiple times…only to remember that they are not at the end of the line anymore.   MS nurses can have immeasurable benefits to people with MS. Neurologists don’t have the time to spend with people and despite their stretched time, it’s during the visit with the nurse that people build a relationship much faster than with their doctor. It isn't very often that a neurologist will call a patient or take a call from a patient, but an MS nurse will, acting as a liaison and dealing with issues efficiently.  At the time of my diagnosis my MS nurse was a great support to me- she was my first call when I needed advice, she gave me information I needed and I was supported. At the time of my diagnosis I was in college and nearly finished my course and I wanted to keep going. Some people thought I should take time off, but my nurse really listened to what I wanted and supported me to do it. She organised letters from the hospital so that I could have support (a personal assistant for a number of hours per week) which helped me continue on for the final months. Life goes on, time passes by, more calls are made with visits to the MS clinic and more conversations. Over the years my MS nurse and I developed a better relationship as a firmer grasp of my individual needs was established.  I travel to New York every year to see a specialist and my nurse helped me access to my medical files so I can take them with me. The decision to see someone abroad is not one that everyone can or will make but it works for me - I like the combined care I receive. My MS nurse has always supported me with my decision and that makes a difference to me. But now, when there are no MS nurses in my hospital, it's more difficult. MS nurses make an often cold and clinical landscape a little warmer, friendlier and humane. MS nurses support people to live a full and independent life. They can also make referrals for further specialised care. With their vast experience working in the Irish health system, they are aware of resources that many people don't even realise they can access. MS nurses can guide us on how best to access and use these resources for even better health.  The European Multiple Sclerosis Platform (EMSP) runs an education programme called MS Nurse Pro – an online training curriculum for nurses beginning their career in the field of MS. It is a fantastic tool for professionals that provides online training in five modules - Understanding MS, Clinical Presentation, Diagnosis and Assessment, Treatment, Care and Support. As someone with MS, I think that these areas are exactly what MS nurses need to be trained on, it gives them the tools to provide excellent care, information and support to the people who need them. MS nurses have positively impacted my life and care and the sooner they return to my hospital, the better. How has having access to an MS nurse affected you? Do they have an impact on your care? Please use the comment section below. 

    Author: Aoife Kirwan - 04 Aug 2016

  • Photo for article: My MS Passion Piece: Choosing the Right Drug

    My MS Passion Piece: Choosing the Right Drug

    How do you make your decisions? We all know how being better informed means better decision-making but we don't always get the information we need. Today Joan talks about the importance of being well informed about MS drug treatments and medications. It might sound crazy what I’m about to say but I’m going to say it out loud anyway because it’s something I feel really strongly about. “Why can’t I see what MS Medications are available to me and compare them according to what I want from a drug?” There you go. Better out than in! All over the land- people are telling me this can’t happen but I say “Why not?” This is what I want: When I go to the supermarket to buy a loaf of bread, I can see what is available to me on the shelf. If I want to, I can compare Brennans with Pat the Baker by looking at the amount of calories, fat, saturates, sugar and salt per portion. The traffic light system means that I know that green is good for me, red is bad and orange is somewhere in the middle. I can also see the price of each pan and compare per unit. Based on this information, I can make an informed decision on which bread to buy on a particular day. Now, the things I look for in a medication are:  Efficacy- for my type of MS, will I have less relapses if I take it? Safety- does it come from a reputable source? Quality- do I trust it? Benefit-risk- will it do me more good than harm? Why can’t I compare these requirements in a simple way when I am considering which MS drug to take? I’m sure that neurologists are sick to the back teeth of being told by patients that they have read about a wonder drug on the internet when the drug is not suitable for prescription in their case. An equal frustration for patients is when a new, suitable drug is not yet available to them as the approval process has not yet been completed (or may never be). The BBC Panorama programme “Can You Stop My Multiple Sclerosis?” on Stem Cell transplants in the U.K springs to mind here.  I know that everyone has personal preferences when it comes to choosing a medication. For me- side effects are really important as I have kids and want to be as well as I can for their shenanigans. Cost doesn’t come into it so much in Ireland because of the Long Term Illness Scheme but I can see how it would be a major issue if I had to pay for my medication myself. I am eternally grateful to the Irish Government for this legislation! In her blog on Medication and MS my friend Niamh Mc Carron suggested a second consultation and I think that would be a really good start to help me make a more informed decision. Sin é! Short blog but it’s something I wanted to say. Do you find you get confused when comparing MS therapies? Do you wonder why you did or didn’t get offered a particular drug? Are you waiting for a suitable one to be approved? What would you LIKE to see to help you come to your best choice? I would love to hear from you! Thanks for listening. 

    Author: Joan Jordan - 28 Jul 2016

All MS and Me Blog Articles

 LittleWoods Ireland blog awards 2016


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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