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Young adults lived experiences and perceptions of parental MS and how it impacts on them. Niall Moloney, 4th year Occupational Student, NUI Galway is looking for participants to engage in a research study. Who can participate? The participants for this particular study are children of people with MS who are aged between 18 and 30 years. Aim of study The study seeks to explore young adults lived experiences and perceptions of parental multiple sclerosis and how it impacted and/or impacts on them. It is anticipated that this study will inform service provision regarding areas in which young adults who experience parental MS may require support. What do I have to do? Young adult participants aged between 18-30 years, will be asked to engage in short individual interviews and complete a demographic questionnaire. We are asking if you have children within this age group who might be interested in participating in this project and if so, would you pass on this information. How to get involved If they are interested please contact Niall directly at firstname.lastname@example.org Further reading Download participants invitation Download participants Information sheet Download summary of project Download letter from research supervisor Download Interview schedule
Where do you get your MS treatment information? This week in her first blog as part of the renewed MS and Me writing team, Joan Jordan tackles medication, DMTs, clinical trials and decision-making. Read on for a clear description of how Joan made her DMT decisions…. I was a bit late to board the DMT (Disease Modifying Therapy) train. Although I had experienced symptoms of MS since my early twenties, I did not actually get diagnosed until I was 36. About six months later, I signed up for a clinical trial. For a few years, I was not actually sure which medication/DMT I was on because it was a double-blinded trial. This means that neither I nor my doctor knew which of the two drugs I was taking was the placebo (dummy) and which one was active. I found the whole process of participating in a clinical trial fascinating and it inspired me to want to learn more about how medications are developed and monitored. While I was on the clinical trial, I experienced severe side effects. I felt like I was losing a day a week to “flu-like” symptoms. Can you imagine having the flu for one seventh of your life? That’s ten years of feeling dreadful if I reached the average life expectancy! I began to weigh up the advantages of taking medication for my MS at all. How did I know it was working? Were the “flu-like” symptoms worth not having relapses? I also felt terribly guilty about not being able to do my daily tasks like caring for my children or not being productive at work when I was experiencing the dreaded “flu-like” symptoms. I don’t regret taking part in the clinical trial. I feel it gave me a bit of time to get over the shock of my MS diagnosis and to get a clear picture of what treatment options were available to me. I also felt that I was contributing, in my own way, towards the process of getting new medication on the market for people living with MS. I learned what a Disease Modifying Therapy meant. DMTs are NOT a cure for MS but could reduce how many relapses I had and their severity. DMTs can also slow down the damage caused by relapsing MS that builds up over time. Because I did not respond well to the first DMT I took, I was then moved onto a second line therapy. I had to have a ‘wash-out’ period where the old medication left my system. During this time, I had my first major relapse. I guess I had the answer to the question about the “flu-like” symptoms being worth it. Choosing my next DMT was difficult and I would encourage anyone considering starting or changing, to do their homework and investigate which one would suit you and your lifestyle best. Don’t let yourself be rushed into a decision. At the end of the day it’s your health you are deciding about. How long would you take to choose a new car? I have much less side effects on the second DMT I tried. I know it’s working because I have no evidence of disease activity in my annual MRI. I make sure to read my patient information leaflet and get my bloods checked regularly to monitor how my liver is functioning. When considering a DMT it is vital to get your facts from a trusted source and make an informed decision with your neurologist.
An evening of music and song, April 13th Longtime MS Ireland friend and supporter Regina Nathan (Soprano) is hosting a concert to benefit our MS Care Centre. We are excited about this special event and know it will be a big hit with music-lovers far and wide. Special guests appearing on the night: Pianist Mairead Hurley Soprano Barbara Galvan Sheridan Young European String Chamber Orchestra (YESCO) with conductor Ronald Masin Rhapsody – male voice choral group, musical director Tadhg de Brún Join Regina and friends in St. Colmcille’s Church, Knocklyon, Dublin on Friday 13th April at 8pm (doors open from 7.30pm) Tickets are €25pp Get in touch Contact our fundraising team on (01) 6781600 or email email@example.com Originally published 2nd February 2018
MS Research European Multiple Sclerosis Platform (EMSP) are pleased to share with you the programme of the Annual Conference on MS Research Towards a Patient Centred Approach in Bratislava, Slovakia. We remind you the AGM takes places on 7 June and will continue with the conference on 8-9 June 2018 Join us for the unique opportunity to not only hear about the latest research news that directly impact the lives of people with MS, but also to learn from best practices in the field of patient advocacy at scientific level. Programme highlights include: ▪ Educational Workshops on Clinical Trials and Health Technology Assessment ▪ Overview of the current research agenda by Prof Alan Thompson, Dean, Faculty of Brain Sciences at University College London ▪ Insight in the ongoing research programmes by ECTRIMS, the European Union and the Progressive MS Alliance ▪ Keynote lecture on Progressive MS and future development in the field by Prof Tobias Derfuss from the Basel University Hospital ▪ As well as hot updates on Genetics and environmental factors and the role Gut and microbiota play in MS ▪ Alongside many other networking opportunities and exchange of best practices with MS societies and patient advocates from across Europe Register here
This year International Women’s Day and Mother’s Day are the same week. In her blog today, Mary Deveraux lets us in on her thoughts for the occasions and reflects on her, and her family’s new experience of living with Primary Progressive MS. Today, on International Women’s Day, we celebrate the impact females from our country and internationally have had on the world. I’d like us to also celebrate how damn amazing women with MS are and give you my experience of the past few years. I vividly remember saying to a friend two Christmases ago that I thought there was something going on with my body. Soon after, MS came crashing into my life and the lives of my husband, my children, my family, my friends and my work colleagues. As we’ve journeyed together, as much as I have changed I also I see how the people in my life have changed too. The experience has changed me to such an extent that there are times when I’m overwhelmed with self-pity, wallow in ‘this is only about me’ focusing on who I used to be. But it isn’t just about me, it is about Us. This Mother’s Day I’ll spend time enjoying time with family, reflecting on my life and the different roles I have. And then I’ll think about my MS and its progression. I compare myself to this time last year. I was working full time, I walked without an aid, I was driving my car and I loved walking the promenade on holidays. There are many activities I still do but now, there are limitations that I never imagined. MS has brought pain at an extraordinary level, cognitive/bladder/lung/mobility issues and overwhelming fatigue. My MS is Primary Progressive and it feels like I haven’t had a day’s break from it in six years. And if I’ve not had a break, my family hasn’t either. They’ve had to deal with a changed mother and wife, home life being different, changed plans. We all know how difficult it can be to deal with change when we want it, how much more so when it’s something we DON’t want! No matter how much I want them to look at me and see “my mother/my wife, a strong independent woman” I’m not like I was. I am now more dependent on others. While I am grateful for the help of my family and friends and would be lost without them, I’m finding it really hard. Before all this, I was always the ‘go to’ person, the fixer, the do-er. These limitations are new and I’m doing what I can to get comfortable with the changes. I have always been adamant that my children and my husband will not be my Carer (again back to changing roles). I want them to continue being children and my husband, my partner. I want to be their mother and his wife. Yes, down the line there will have to be changes made and I worry more than others about my future. But I am still a mother and someone’s wife. When I’m in a slump, I think how ‘this’ is not what anyone signed up to and I long to take away the fear and inject a great big dose of laughter back in. Yet, we are a powerful clan, we have ‘dug in’ by learning together about the changes this disease can bring to someone; we have ‘held on’ by continuing to love and support one another and seeing how well we’ve done, We, the Devereux/O’Connors are as brave as any group of Amazonians! This Week of Women, I started by taking back some power, remembering my own gifts and using the example of other women who overcame great obstacles. Being brave isn’t always about being the loudest or the fiercest. There are times when even talking can be too much for me! Brave is saying every morning that today, I’ll try again. Today and on Mother’s Day I say to every woman with MS, you are brave and please, keep trying.
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